Anemia is a decrease in the number of red blood cells (RBCs). Since most cancer therapies destroy cells that grow at a fast rate, and red blood cells have relatively rapid growth rates, they are often affected. An important part of the RBC is hemoglobin, the protein that carries oxygen throughout your body. Therefore, when your hemoglobin is low, oxygen levels are decreased, and your body has to work harder in order to compensate. The end result is that your body becomes tired.

Normal hemoglobin levels for women are usually in the range of 12-16 gm/dL; for men, the normal level is from 14-18 gm/dL. While receiving cancer therapy, your hemoglobin level may drop to lower than these normal levels, so your hemoglobin level will be checked periodically throughout the course of treatments. Any time that your hemoglobin level drops below 10.0 gm/dL you are considered to be anemic.

The signs and symptoms of anemia include:

• Weakness or fatigue
• Dizziness
• Headache
• Shortness of breath or difficulty breathing
• Palpitations or rapid heart beat
• Pale skin
• Feeling cold, particularly in the hands and feet

What Can I Do to Prevent Anemia?

Since red blood cells are destroyed as a side effect of cancer therapy, there is nothing specifically that you can do to prevent anemia from occurring. Anemia may cause you to feel weak and tired. Here are some ways that may help you feel better:

Saving energy

• Get plenty of sleep.
• Avoid prolonged or strenuous activity.
• Pace yourself; take rest periods during activities that make you feel tired. Take short naps when needed.
• Prioritize your activities so you will have enough energy for important activities or the activities that you enjoy most.
• Ask friends and family to help you prepare meals or do chores when you're tired.

Avoiding injury

• Change positions slowly, especially when going from lying to standing to prevent dizziness.
• When getting out of bed, sit on the side of the bed for a few minutes before standing.

Eat a well-balanced diet

• Eat foods high in iron, including green leafy vegetables, liver and cooked red meats.
• Drink plenty of fluids.
• Avoid caffeine and big meals late in the day if you're having trouble sleeping at night.
• Take iron supplements only if you have been told to by your oncologist or nurse.

When Should I Call My Doctor?

Call your doctor immediately if you have any one or more of the following:

• Dizziness
• Shortness of breath or difficulty breathing
• Excessive weakness or fatigue
• Palpitations or chest pain

How is Anemia Treated?

Depending on the cause and severity of the anemia, there are several ways that anemia can be treated. Your doctor may instruct you to take over-the-counter iron pills on a daily basis or may order blood transfusions.

Your doctor may also choose to order injections of a "growth factor", which can be used to stimulate the growth of red blood cells, in certain patients. By increasing your body's production of red blood cells, this growth factor may decrease your risk of becoming anemic, and may also decrease the number of blood transfusions that may be required during your treatment.

Growth factors are administered by injection. You may receive the injections from the oncology nurse, or you and/or a family member may be taught how to give the injections at home. Once your red blood cell count has returned to a normal level, the injections will be stopped.

If necessary, your oncologist may decide to delay further treatments until your red blood cell count has returned to normal levels.

Cancer therapy not only destroys cancerous cells, but may affect healthy cells in your body. Blood cells are commonly affected during cancer therapy, and this can lead to problems depending on the function of that blood cell.

Use the blood count chart to follow your blood counts after treatment. This will help you know when extra precautions are necessary.

White blood cells (WBC): These cells are produced in the bone marrow and are a part of the body's immune system, helping to fight infection. A normal WBC count is 4,000-11,000 in adults.

Neutrophil: A type of WBC. It is the most important WBC in fighting infection, so you are at higher risk of infection when this number is below 1000. A normal count (sometimes called an ANC) is 2500-7000. A count below 1000 is called neutropenia. When this count is low wash your hands frequently, avoid large crowds of people or those who are sick, and check your temperature at least twice a day. Notify your healthcare team if you have a temperature greater than 100.4, a sore throat or cold, or a sore/wound that does not heal.

Hemoglobin: The part of a red blood cell that is responsible for carrying oxygen to the tissues. Normal levels for an adult female are 12-16 and 14-18 for an adult male. A low hemoglobin can make you feel tired. If you notice any difficulty breathing or pain in your chest, you should notify your healthcare team. If your count becomes too low or you experience breathing difficulties or chest pressure, you may receive a blood transfusion.

Platelet: A blood cell that is involved in blood clotting. When this count is below 50,000, you are at higher risk of bleeding. The risk of bleeding increases as the count becomes lower. A normal count is 150,000-300,000 in an adult. When your platelet count is low you should not use a razor (electric razor is ok), do not participate in any contact sports, or take aspirin or ibuprofen products (these can also increase the risk of bleeding). Let your doctor or nurse know if you have any bleeding, including nose bleeds or bleeding gums. If your count becomes too low or you have bleeding, you may receive a platelet transfusion.

Guide to Blood Counts

Use the treatment column to record days you received chemotherapy, bio or radiation therapy
and any types of blood transfusions you may have received.

What are white blood cells?

White blood cells (WBC) are just one piece of the very complex immune system in our bodies. This system is responsible for fighting infection and protecting our bodies from harmful bacteria, viruses and other foreign invaders. There are five different types of white blood cells, each with its own purpose in the immune system: neutrophils (accounting for 50-70% of the WBCs), lymphocytes (25-35%), monocytes (4-6%), basophils (0.4-1%), and eosinophils (1-3%). A WBC count with differential is the blood test that reports the numbers of these cells in the blood.

What are neutrophils and neutropenia?

Neutrophils make up the majority of WBCs and are formed in the bone marrow. They are the “first responders” and quickly appear at the site of infection, ingesting and destroying foreign particles. They can be found in the pus of a wound and play a role in acute inflammation (redness, warmth, swelling, and pain). A normal neutrophil count (also called absolute neutrophil count or ANC) is between 2500 and 5000. A low neutrophil count is known as neutropenia. Neutropenia can be caused by a congenital or inherited disorder, or can be a side effect of a medication or radiation therapy. Chemotherapy medications are the most common cause of neutropenia, but other medications can also cause neutropenia, including (but not limited to): sulfonamides (Bactrim), allopurinol, ibuprofen, indomethasone, several types of antibiotics, blood pressure and anti-seizure medications. For the purposes of this article, we will only discuss neutropenia caused by cancer therapies.

Mature neutrophils are sometimes called “segs”, named for their segmented nucleus. Immature neutrophils are called “bands” because their nucleus appears banded. These 2 counts together make up the absolute neutrophil count, or ANC.

Cancer therapies, including chemotherapy, biotherapy, and radiation therapy, can cause neutropenia. This is because these therapies are unable to tell the difference between cancer cells and healthy cells. Most chemotherapies work by killing rapidly dividing cells. Cancer cells divide rapidly, but so do blood / bone marrow cells, hair follicles, and the cells that line the gastrointestinal tract (mouth, throat, stomach, and bowel). Damage to these normal cells leads to the side effects we see with chemotherapy (low blood counts, hair loss, mouth sores, and diarrhea). Radiation damages blood cells by affecting the marrow production in the bones in the area of treatment.

Why is neutropenia important?

A low neutrophil count greatly increases the risk of developing an infection because your usual mechanism to respond to infection (neutrophils) is not available. There are various levels of neutropenia, but the lower the ANC, the higher the risk of developing infection.

Grades of Neutropenia

• •  An ANC between 1000 and 1500 is considered mild neutropenia (causing minimal risk of infection)
• •  An ANC between 500 and 1000 is considered moderate neutropenia (causing moderate risk of infection)
• •  An ANC less than 500 is considered severe neutropenia (causing a severe risk of infection)

What is a nadir?

Nadir is a term used by the healthcare team to describe the point after treatment when your blood counts are at their lowest. This can include white blood cells, red blood cells, and/or platelets, depending on the type of treatment you received and your body's response to the treatment. This decrease in blood counts is also called myelosuppression. With chemotherapy, this often occurs 7-10 days after treatment. Your blood counts will then slowly climb back to an acceptable level before the next treatment. If your blood counts have not gotten back to an acceptable level, your healthcare team will hold off on giving you more therapy. Giving you more therapy with blood counts that are too low could make it very difficult for your body to recuperate.

What can I do to avoid infection?

Hand washing, hand washing, hand washing! This is the number one way to prevent infection. This should include you and all other members of the household. If you are around small children, teach them to wash their hands and make it their way to participate and to help you get better. Avoid large crowds, like the mall during the holidays. Avoid people you know are sick; this includes colds, viruses or other infections. If they must visit, tell them to make it a phone visit. It is also a good idea to avoid people who live in a house with other people who are sick. For instance, Aunt Susie's three kids are sick, but she feels fine, so she's going to come for a visit. Err on the side of caution and tell her to stay home.

Now, even the best hand washers can get an infection, so you need to be on the lookout for the signs. We often think of developing a high fever, redness, swelling, or pus as signs of an infection, but remember these signs are the job of the neutrophils and they are on vacation! When your counts are low, you must take even the slightest sign as serious and notify your healthcare team- even if it is 3 am on Saturday night. A temperature of 100.5 can be a sign of an extremely dangerous situation in a patient on treatment, so don't take the chance. Make sure you know the number to call if you need to report a fever or other problem on a night or weekend!

Signs of Infection to Watch for:

• Temperature > 100.4°F Shaking chills
• Cough Sore throat
• Burning with urination New lower back pain
• Blood in urine Diarrhea (worsening)
• Rash
• Redness, soreness around central line catheter or a wound

What can be done to prevent neutropenia?

Unfortunately, there is no magic vitamin we can take or food we can eat to prevent neutropenia. Fortunately, there is a group of medications called growth factors, or colony stimulating factors, that can help prevent neutropenia or help make the time you are neutropenic shorter. There are a few growth factors available in the United States: filgrastim (Neupogen®, pegfilgrastim (Neulasta®) and sargramostim (Leukine®). These are manmade versions of a protein, naturally produced in the body that stimulates neutrophil production. These medications are given as a subcutaneous injection (just under the skin) and are started no sooner than 24 hours after chemotherapy. In the case of filgrastim and sargramostim, they are given once a day until the nadir point passes and the ANC returns to a normal level. In the case of pegfilgrastim, only one injection is required, given 24 hours after chemotherapy.

Why is it important to prevent neutropenia?

Your healthcare team has determined the chemotherapy and/or radiation dose and schedule to produce the best opportunity for success in your case. Neutropenia can lead to delays in treatment and dose reductions, which can make your chemotherapy less effective. Studies show that for certain types of cancer, chemotherapy produces the best long-term results when patients receive the full dose on time, every time. With good recovery of your white blood cell count, you may have a better chance of sticking to your treatment schedule. And most doctors agree that doing so is the first step to success.

What else should I know?

Be an educated consumer! Ask your healthcare team about your blood counts and record them in a log. Know the signs of infection and who to notify if you develop any. If you experience neutropenia, ask about using a growth factor. And teach those around you how to keep infection at bay.

Other resources

Blood counts log – print this log to keep track of your blood counts and treatments.

OncoLink Rx – learn about the medications you are receiving.

More Information

Neutropenia Tip Sheet: Here you will find helpful tips from our Oncology Nurse Educator about infection and cancer related neutropenia. You will find information that explains what neutropenia is, why it happens, how it is treated, and what you can do to prevent yourself from developing it.

Neutropenia Medications: Find out about medications which may be used to help infection and cancer related neutropenia or to shorten the duration of neutropenia in some cancer patients receiving chemotherapy and radiation therapy.

• Filgrastim (G-CSF, Neupogen®)
• Pegfilgrastim (Neulasta®)
• Sargramostim (GM-CSF, Leukine®)

More Information about Neutropenia: Includes the latest information about infection and cancer related neutropenia from Reuters News, The Abramson Cancer Center, the OncoLink Scientific coverage of infection and cancer related neutropenia related topics, special cancer related teaching guides, information about causes of infection and cancer related neutropenia and links to the National Cancer Institute, and other cancer resources.

Thrombocytopenia is a low level of platelets. Radiation therapy and certain chemotherapy medications can damage platelets and lead to thrombocytopenia. Patients receiving a combination of radiation therapy and chemotherapy are at greater risk for thrombocytopenia.

Platelets play an important role in blood clotting, so thrombocytopenia puts you at higher risk of bleeding. Therefore, while you are receiving therapy, use caution to avoid any activities that could result in bleeding. Even the most minor of injuries, such as a small cut or bump, can result in excessive bleeding when your platelets are low.

A normal platelet counts ranges from 150,000 - 400,000 per mm3 of blood. While receiving chemotherapy or radiation therapy, your platelet count may drop. Your platelet count will be checked throughout the course of your treatments. Any time your platelet count drops below 50,000 per mm3 you are considered to be at increased risk for bleeding. If your platelet count drops below 10,000 per mm3, you may require a transfusion of platelets.

What Can I Do To Prevent Bleeding?

Since platelets are destroyed as a side effect of radiation therapy and chemotherapy, there is nothing specifically that you can do to prevent thrombocytopenia from occurring. Nonetheless, there are several things that you can do to reduce your risk of injury when your platelets are low:

Taking prompt action at the first signs of a low platelet count is essential as it may help to prevent a bleeding episode. The signs and symptoms of a low platelet count include:

• Excessive bruising of your skin
• Tiny, pinpoint red spots on your skin (called petechiae)
• Bleeding gums
• Nosebleeds that will not stop
• Excessive bleeding from a small cut, or bleeding that won't stop even after pressure has been applied
• Dark colored urine or blood in your urine
• Blood from your rectum, blood in your stool or black colored stool
• Menstrual bleeding that is heavier than usual, lasts longer than usual or occurs between periods

What Can I Do To Reduce Bleeding if I Develop Thrombocytopenia?

Perform daily personal hygiene in ways that minimize the risk of bleeding.

• Keep your mouth clean and moist.
• Brush your teeth gently with a soft bristle toothbrush. If you cannot use a toothbrush, use a sponge toothette to clean your teeth and gums.
• Rinse your mouth after each meal with a baking soda solution (2 tsp. baking soda to 8 oz. water).
• Do not use dental floss.
• Avoid any commercial mouthwashes that contain alcohol. Alcohol can dry out your mouth, which may lead to bleeding.
• Use petroleum jelly or other lip balms to keep your lips moist and to prevent cracking.
• Take sips of water or juice frequently if your tongue or mouth feel dry.
• Modify feminine hygiene practices:

• Use sanitary napkins rather than tampons during menstruation.
• Avoid vaginal douching.

Take these other general precautions:

• Do not cough forcefully or harshly. If you have a persistent cough, notify your doctor or nurse who may recommend a cough syrup.
• Do not blow your nose too hard.
• Avoid straining too much with bowel movements. If you have a problem with constipation, take a stool softener or laxative to make it easier.
• Do not use rectal thermometers, suppositories or enemas.
• Use an electric razor for shaving.
• Do not have any dental work or cleaning before talking to your oncologist.
• Do not take any medications that affect blood clotting:
• Do not take aspirin or any product that contains aspirin. Check the labels of all drugs you are taking for salicylic acid, the chemical name for aspirin. If you are not sure about a drug or cannot tell by reading the label, check with your oncologist, nurse or a pharmacist.
• Do not take any non-steroidal, anti-inflammatory medications (NSAIDs) such as Motrin®, Aleve®, Advil®, etc.
• For headaches or other pain, use acetaminophen (Tylenol®).

Adjust your lifestyle to minimize the risk of bleeding.

• Avoid strenuous activity and lifting heavy objects.
• Avoid sports and activities that could result in falling and/or injury including but not necessarily limited to bicycling, roller-blading, skating and skiing.
• Drink 8 to 10, 8-ounce glasses of non-alcoholic fluid a day to keep your mouth moist, avoid constipation and keep the intestinal lining in good condition.
• Wear shoes or slippers at all times to protect your feet.
• Do not wear tight-fitting clothing.

• Consult with your doctor or nurse on the safety of sexual activity as it relates to your low platelet count. Talk with your healthcare providers if you have specific sexual practices that you are concerned about. They may say you should not have intercourse, as vaginal or anal penetration (including toys/props) or oral sex can pose a risk of bleeding. Use a water-based lubricant and avoid vigorous thrusting during sexual intercourse, if intercourse is permitted by your healthcare provider.

What if I Start to Bleed?

Even if you have taken special precautions to decrease the chance of injury and bleeding, it is still possible that bleeding will occur. If bleeding occurs, apply firm pressure for 5 minutes to the area. If bleeding does not stop after 5 minutes, continue to apply pressure until it has stopped completely.

If you have a nosebleed, apply pressure with your fingers below the bridge of your nose until the bleeding stops. Keep your head raised.

When Should I Call My Doctor?

Call your doctor immediately if you have any one or more of the following:

• Bleeding that does not stop after you have applied pressure for 10 to 15 minutes.
• Blood in your urine or your urine appears dark in color.
• Blood from your rectum, blood in your stool or your stool is black.
• A change in your vision.
• A persistent headache, blurred vision or a change in your level of consciousness such as a decreased attention span, excessive sleeping, confusion, and/or difficulty being awakened.

If you have a major injury or start spontaneously bleeding, go immediately to the nearest hospital emergency room. Make sure you inform the doctor that you are receiving cancer therapy and that your platelet count may be low.

How is Thrombocytopenia Treated?

If your platelet count drops to a point that your oncologist is concerned about significant risk of bleeding, they may order transfusions of platelets. These transfusions are most often done in an outpatient treatment center. Unless other problems exist, patients rarely are admitted to the hospital just to receive platelet transfusions.

If necessary, your oncologist may decide to delay further treatments until your platelet count has returned to normal levels.

You may notice that your nurse wears protective equipment (gloves, gown, etc.) when administering your chemotherapy to protect him or herself from being exposed to the medications. You, your caregivers and family members must also protect yourselves against exposure. This handout will review how to safely handle chemotherapy medicines and your body waste when at home.

Handling Body Waste

Chemotherapy medication is released from the body through urine, stool, vomit and blood for 48 hours after your treatment has stopped. The guidelines listed below should be followed during that time:

• After using the toilet, close the lid and flush twice. Men should urinate sitting down to avoid splashing.
• After using the toilet, wash your hands well with soap and water. If any fluids splashed on your skin, clean the area with soap and water.
• Wear gloves when cleaning the toilet or cleaning up any urine, stool or vomit or changing diapers / incontinence pads. Wash your hands with the gloves on, then remove the gloves, dispose of them in the trash, and wash your hands again.
• If using a bedpan or urinal, wear gloves and dump contents into toilet close to the water to limit splashing. While wearing the gloves, wash the container with soap and water after each use.
• Diapers can be disposed of in the regular trash.
• If you have an ostomy, wear gloves when emptying and wash the collection bag once a day with soap and water.

Handling Trash or Laundry

When handling trash or laundry that has come in contact with chemotherapy or body fluids within 48 hours after treatment:

• Wear gloves to handle contaminated trash or laundry. Wash your hands before and after removing the gloves.
• Contaminated trash can be placed in special bags if you were supplied with these or doubled bagged in a plastic, leak proof bags.
• If possible, wash contaminated laundry right away. If you cannot wash it right away, place in a leak proof plastic bag and wash as soon as possible.
• Wash contaminated laundry separate from other laundry, using regular laundry detergent and warm or hot water.

Handling Spills

If chemotherapy or body fluids (within 48 hours after treatment) are spilled or splashed:

• Wear gloves to clean up the spill/splash.
• Wipe up the spill with paper towels.
• Clean the area with soap and water and rinse using paper towels.
• Dispose of trash in specially marker containers (if you were provided with them) or double bag in leak proof plastic bags.
• Wash hands before and after removing gloves.

Sexual Contact

Chemotherapy medications can also be excreted in body fluids, such as semen and vaginal fluid. To prevent exposure of these fluids for you or your partner:

• Use condoms during oral sex and intercourse for 48 hours after treatment.
• Effective birth control should be used throughout treatment to prevent pregnancy while on these medications and for several months or years after therapy. Chemotherapy can have harmful side effects to the fetus, especially in the first trimester. In addition, menstrual cycles can become irregular during and after treatment, so you may not know if you are at a time in your cycle when you could become pregnant or if you are actually pregnant.

Safety for My Family

• Hugging and kissing is safe for you and your partner or family members.
• You can visit, sit with, hug and kiss the children in your life.
• You can be around pregnant women, though (if possible) they should not clean up any of your body fluids after you have treatment.
• You can share a bathroom with others. If body fluids splash on the toilet, wear gloves and clean the area with soap and water before others use the toilet.

Your physician has prescribed a cancer treatment that you will take by mouth. It may be in the form of a pill, capsule, tablet or liquid. It is important to remember that oral chemotherapy can be just as toxic as when given in a vein and it is important to follow some safety precautions. This article will provide tips to keep you, your caregiver and family safe.

• It is very important that you take your medication as scheduled. Missed doses, taking the wrong amount or taking the medication incorrectly can make the treatment less effective.

• Swallow your medication whole. Do not chew, break or open capsules. If you are unable to swallow the medication, talk to your nurse or pharmacist about other ways you can take the medication.

• Take your dose at about the same time each day.

• Wash your hands before and after taking your medication.

• Always double and triple check the dose before taking. You may need to take more than one pill or combine pills of different strengths to make the dose you need.

• If you miss a dose, follow the instructions below from your team. Do not take a double dose unless you are told to do so. Contact your oncology team if you miss a dose for further instructions.

• Store your medication in the original, labeled container at room temperature and in a dry location (Unless otherwise directed by your HCP or Pharmacist). Keep containers out of reach of children and pets.

• If a caregiver prepares your dose for you, they should either wear gloves or pour the pills directly from their container into the cap or a small cup to hand to you. They should avoid touching the pills. They should always wash their hands before and after giving you the medication. Pregnant or nursing women should not prepare the dose for you.

• If you vomit after taking the dose, call your oncology team for instructions.

• Return any unused medication to your oncology clinic for disposal. Do not flush down the toilet or throw in the trash.

• Read Home Safety for Patients Receiving Chemotherapy for information about safety while receiving chemotherapy.

Specific Instructions for My Treatment [Print PDF]

 

Instructions for anti-nausea medications:

 

 

 

Special instructions (take with/without food, foods to avoid, etc.):

 

 

 

Contact your oncology team at number below if you develop any unexpected/uncontrolled side effects.

Physician / Nurse Practitioner:

Contact number:

 

After hours contact instructions:

 

 

 

Next Appointment:

Aromatase inhibitors (AIs) are a common therapy for post-menopausal women with hormone positive breast cancer. After menopause, estrogen is mainly produced by converting androgens (sex hormones produced by the adrenal glands) into estrogens, which occurs in fat cells (as opposed to in the ovaries before menopause). An enzyme called aromatase is responsible for this conversion. AIs block this conversion, leading to less estrogen in the body.

While AIs are an effective therapy in reducing the risk of breast cancer recurrence, they increase the risk of developing osteoporosis and commonly cause joint (or muscle) aches and pains. These joint symptoms, often called arthralgias, can interfere with quality of life and are often the cause of a woman stopping therapy early.

Studies have found joint symptoms most often develop within the first 3 months on therapy, though some cases continue to develop after 3 months. In studies of AI-related joint symptoms, anywhere from 20-50% of women on therapy reported the side effect. Symptoms typically affect the fingers, hands, wrists, elbows, shoulders, knees and ankles. Carpal tunnel syndrome is a common diagnosis in women with AI-related joint symptoms. Other diagnoses include osteoarthritis, tendonitis and bursitis.

What causes AI-related joint symptoms?

The actual cause of AI-related joint symptoms is not well understood. One common theory is that the rapid drop in estrogen levels may be responsible for two reasons: this drop may actually lower the pain threshold, allowing the brain to better "detect" joint symptoms that already exist. In addition, the drop in estrogen causes cytokines (proteins released by the body’s cells) to be released in high levels, which may hasten bone loss and aging, leading to pain. Unfortunately, a poor understanding of the cause makes it difficult to prevent this side effect. In turn, the goal is to treat the symptoms to allow women to have good quality of life while completing their prescribed therapy in full.

Who is at risk for developing this side effect?

It would be helpful for clinicians to have a way of predicting who is at greatest risk for developing AI-related joint symptoms, but studies have not found consistent predictors. Some studies have shown that having received prior chemotherapy, prior hormone replacement therapy, prior taxane chemotherapy (paclitaxel, taxotere) and having had their last menstrual period within 5 years may predict increased risk. On the flip side, taking tamoxifen before an AI may reduce the likelihood of developing joint symptoms. There may also be an increased risk for those with pre-existing joint symptoms, such as rheumatoid arthritis. Research continues to identify factors that could help better predict each woman's risk.

Managing joint symptoms

First and foremost, patients should talk with their oncology team if they develop joint symptoms. The oncology team is there to support each patient to complete their prescribed therapy and will help identify ways to manage this side effect. To derive the full benefit from AI therapy, it is important to take the medication daily, for as long as it is prescribed.

Medications for symptom management

A significant component of the joint symptoms experienced with AIs is swelling of the joints. Therefore, a medication that decreases this swelling, such as non-steroidal anti-inflammatory drugs (NSAIDS, such as ibuprofen) or a coxib (such as celecoxib, or Celebrex), may help with pain relief. However, these medications are not without side effects of their own, so each patient should discuss his/her health history with the team before starting these medications. Additional pain relieving medications, including acetaminophen and opiods, can be added for those patients who do not get relief with an anti-inflammatory alone or for those who cannot tolerate the anti-inflammatory medications.

Switching AIs

While there are no studies to confirm the effectiveness of changing to another drug, some practitioners will switch to another AI or tamoxifen when symptoms are unmanageable and may lead to the patient stopping therapy altogether. Prior to switching, it may be beneficial to stop therapy for 6 to 8 weeks to be sure that the AI is the cause of the symptoms.

Supplements and other therapies

There has been recent interest in the possibility that vitamin D supplementation may help to decrease AI-related arthralgia, although this has not been proven in clinical trials. Some studies have suggested that calcium and bisphosphonate therapy (used to prevent/treat osteoporosis) may also prevent AI-related joint symptoms.

Small studies have found a benefit to acupuncture and exercise. Acupuncture was shown to reduce pain from joint symptoms and improve functioning and well-being. Gentle stretching and exercise may also be helpful in reducing symptoms.

Conclusion

AI-related joint symptoms can cause significant pain and interfere with functioning and quality of life. Researchers continue to seek ways to identify women at highest risk for developing this side effect and to find effective therapies to treat it. Women should be advised about this side effect when starting an AI, and encouraged to report these symptoms to the healthcare team. The management of joint symptoms is of utmost importance to helping patients complete their prescribed therapy in full.

References & Further Reading

Coleman RE, Bolten WW, Lansdown M, et al: Aromatase inhibitor-induced arthralgia: clinical experience and treatment recommendations. Cancer Treat Rev 34:275-82, 2008

Gold JM, Burstein HJ: Improving tolerance of AIs: predicting risk and uncovering mechanisms of musculoskeletal toxicity. Oncology (Williston Park) 22:1416, 1424, 2008

Henry NL, Giles JT, Ang D, et al: Prospective characterization of musculoskeletal symptoms in early stage breast cancer patients treated with aromatase inhibitors. Breast Cancer Res Treat 111:365-72, 2008

Henry NL, Giles JT, Stearns V: Aromatase inhibitor-associated musculoskeletal symptoms: etiology and strategies for management. Oncology (Williston Park) 22:1401-8, 2008

Mao JJ, Bruner DW, Stricker C, et al: Feasibility trial of electroacupuncture for aromatase inhibitor--related arthralgia in breast cancer survivors. Integr Cancer Ther 8:123-9, 2009

Mao JJ, Stricker C, Bruner D, et al: Patterns and risk factors associated with aromatase inhibitor-related arthralgia among breast cancer survivors. Cancer 115:3631-9, 2009

Muslimani AA, Spiro TP, Chaudhry AA, et al: Aromatase inhibitor-related musculoskeletal symptoms: is preventing osteoporosis the key to eliminating these symptoms? Clin Breast Cancer 9:34-8, 2009

Many survivors who have previously received or are currently undergoing chemotherapy report experiencing cognitive changes, often referred to as "chemo-brain." These changes include difficulty with short term memory, multi-tasking, new learning, reading comprehension, working with numbers and a decrease in concentration ability. For many years, this was attributed by physicians and researchers to depression or anxiety over the diagnosis and treatment of cancer. More recently, researchers have begun to study and document what survivors have been saying all along; cognitive changes after chemotherapy are real. Although we are not yet able to pinpoint whether only certain chemotherapy drugs are responsible, it seems certain that the effects are cumulative. That is, those who receive more chemotherapy tend to experience greater deficits. Studies have found that cognitive ability can improve over time in some survivors, but deficits are still present in many long-term survivors, even years after treatment. Each person's experience is unique, making it difficult to predict what deficits, if any, a person will experience, and whether or not they will persist after treatment.

In recent years, a number of studies have been reported, many showing some level of decline in brain function in cancer survivors post therapy, although some studies have not found any change. The effect can be a worsening of a pre-existing cognitive issue, or a new change in function. Some study participants worsen during therapy and gradually improve after, while others find their impairments are long-lasting, if not permanent.

What are these cognitive effects exactly? Survivors identify changes in attention / concentration, processing speed, verbal and visual memory, multitasking, word finding, and difficulty with organization. These effects can lead to an inability to perform one's job, difficulty managing family/home responsibilities and even social withdrawal for fear of embarrassment. Family, friends and co-workers often expect the survivor to be "back to normal", only adding to the stress of cognitive changes.

So, what can a person do to improve their brain function? Unfortunately, the research in this area is in its infancy and it will likely be a number of years before we have any definitive answers to that question. We can take some lessons from research in dementia and Alzhiemer's Disease and throw in a dash of common sense to develop some tips to regaining and/or optimizing your brainpower.

Medications

Some medications are being studied as potential treatments for cognitive changes, but there is not yet enough data to support their use. Methylphenidate (Ritalin) and dexmethylphenidate HCL (Focalin), medications used to treat attention deficit hyperactivity disorder (ADHD) and modafinil (provigil), a medication approved to treat narcolepsy, have been studied in cognitive dysfunction after cancer therapy. The theory is that these medications stimulate the brain and therefore may result in improved concentration, memory and attention, as well as fatigue. Along the same lines, caffeine is an over the counter stimulant that improves cognitive function for millions of people every day. It is a relatively safe way for many people to stimulate their brain function.

Certain herbal therapies may be of some benefit. Ginseng has shown some positive effects on cancer-related fatigue. In the book "Your Brain After Chemo", the authors point out that not all ginseng is created alike. Some companies use a manufacturing process called alcohol extraction, which has been shown to have estrogen-like properties. That is a concern for people with estrogen sensitive tumors. They note that it can be difficult to determine the manufacturing process and if the product is free of contaminants. Ginkgo biloba is often promoted as a memory enhancer, but studies have not found this to be true. One large study of elderly patients found no decrease in Alzheimer's disease, and actually saw an increase in dementia and stroke in the group taking the supplement. Ginkgo biloba increases the risk of bleeding and should be used with caution. As with all herbal therapies, just because they are touted as "natural" does not mean they do not have side effects. Investigate the possible side effects of any supplement, as well as the reputation of the manufacturer and their products. The website consumerlab.com independently tests herbal therapies and vitamins for purity. It charges a fee to join, but this keeps them free from advertising influence and is minimal compared to the 34 billion dollars American consumers spend on alternative medicine every year.

"Brain Rehab"

Cognitive rehabilitation programs are structured programs utilizing exercise, tasks that use memory and puzzles to "rehabilitate" one's mind. These programs are typically used for people with brain injuries, but therapists have tailored programs for cancer survivors. A number of companies offer computer programs that aim to improve brain function. There are currently studies ongoing looking at the effectiveness of these programs in cancer survivors, so stay tuned.

Puzzles using numbers, like Sodoku, may help "exercise" your brain. Dan Silverman, MD, PhD, co-author of Your Brain After Chemo, feels these may be beneficial, but it is not known, for example, how well completing a crossword puzzle translates to an effect on verbal memory. It would be helpful if future research looked at these "brain games". It is likely that any brain stimulation may be helpful and certainly cannot hurt, whether through a game, taking a course at a local school or joining a book discussion club.

Fatigue can enhance cognitive problems, so avoiding fatigue by getting enough sleep, incorporating exercise into your life and eating a healthy diet.

Other Causes

It is important to remember that some very treatable problems can result in cognitive difficulties, such as thyroid dysfunction, depression and anxiety, so it is important to exclude or treat these diagnoses. Hypothyroidism (low thyroid hormone levels) is a common issue for survivors and can make you feel "fuzzy" or "out of it." This is easily treatable with supplemental thyroid hormone. Survivors who may be depressed or experiencing anxiety would benefit from consulting with a psychiatrist or psychologist experienced in working with cancer patients or survivors. Don't just assume your cognitive concerns are due to chemo-brain.

Tips

As you can see, there is no "quick fix" for chemo-brain, so get creative and incorporate things into your daily life that can help combat the symptoms.

• Keep a detailed calendar or planner. Got a smartphone? Set alarms to remind you of important appointments.
• The all-to-important sticky note – just be sure to put them in places you will see them!
• In the evening, start a list for tomorrow- what needs to get done? who do I need to call? Create a notebook for this so you can flip ahead and add something to next week's list when it comes to mind.
• Keep a pad in the kitchen for a shopping list- when you see something is running low; make it a habit to add it right away.
• Put a basket near the front door for those items you need every day- cell phone, keys, etc.
• Trouble remembering names? Think of a silly thing to jog that memory- I remember my neighbor Rena's name by thinking Xena Warrior Princess. Sounds silly, but I never forgot her name again!
• Trouble remembering something is cooking? I never put something on the stove without setting the timer- just be sure you don't leave the room without the timer! Get one that can clip on your shirt if that is a concern.
• GPS / Navigation systems can be a lifesaver for getting places.

Most importantly, know your limitations. Don't take on tasks that require too much multi-tasking. Ask for help. Try to keep a positive outlook and find some humor in your "chemo-brain moments".

References & Further Reading

Jansen CE et al. (2008). Preliminary results of a longitudinal study of changes in cognitive function in breast cancer patients undergoing chemotherapy with doxorubicin and cyclophosphamide. Psycho-Oncology. 17(12):1189-95, 2008.

Mitsiades N et al. (2008). Cognitive effects of hormonal therapy in older adults. Seminars in Oncology. 35(6):569-81, 2008.

Nelson CJ (2007). Chemotherapy and cognitive deficits: mechanisms, findings, and potential interventions. Palliative & Supportive Care. 5(3):273-80, 2007.

Silverman D & Davidson, I (2009). Your Brain After Chemo. Cambridge, MA: DaCapo Press.

Weiss, B (2008) Chemobrain: a translational challenge for neurotoxicology. Neurotoxicology. 29(5):891-8, 2008.

The American Cancer Society: Chemo Brain

CANCERcare Information sheets on Chemo-Brain (under Managing side effects)

What is constipation?

Constipation is a decrease in the number of daily bowel movements and/or the difficult passage of hard stool. It may cause discomfort or bleeding from the rectum. Constipation may be caused by decreased fluid and/or food intake, decreased activity, some medications, cancer treatments (chemotherapy), and/or cancers of the digestive system.

The signs and symptoms of constipation include:

• Small, hard bowel movements
• No regular bowel movement in 3 days
• Leaking small amounts of soft or liquid stool from the rectum
• Frequent and/or persistent stomachaches or cramps
• Passing large amounts of gas or frequent belching
• Blown-up or enlarged belly
• Nausea and/or vomiting

When should I call the doctor or nurse?

It is important to call at the first signs of any problem so that the constipation can be managed more easily with the least amount of interventions and so that complications do not occur.

Call your doctor if you have any of the following:

• No bowel movement in 3 days
• Blood in the stool or on toilet tissue
• Rectal pain
• No bowel movement within 1 day of taking a laxative prescribed by the doctor
• Nausea/vomiting
• Abdominal pain, cramping or swelling

What can I do?

• Increase the amount of high-fiber foods in your daily diet, such as:
  • Fresh raw vegetables and fruits, especially those with skins (apples, pears, plums).
  • Bran, whole grains and cereals, granola, wheat germ flakes, and beans.
  • Dried fruits, especially dates, prunes and apricots.
  • Prune, pear and apple juices.
• Increasing fiber (including Metamucil) in the diet is often not effective if your constipation is caused by pain medication. In those cases, you should take a laxative after speaking to your healthcare provider about which one is right for you.
• Drink 6-8 glasses of fluid per day. Try warm or hot fluids, especially in the morning.
• Increase your physical activity as much as possible. Even short walks will help decrease constipation.
• Attempt a bowel movement at a regular time each day, preferably after breakfast.
• Avoid bananas, chocolate, cheese, eggs, rice, beef or fatty fried foods, as these can cause constipation.

How is Constipation Treated?

Treatment of constipation will depend on its cause. Your doctor or nurse may recommend a bowel regimen using stool softeners and/or laxatives. Stool softeners (such as docusate sodium or Colace) work by bringing water into the stool, making it softer and easier to pass. A stimulant or laxative (such as Bisacodyl, Dulcolax, or Senakot) works by stimulating peristalsis, moving the stool through the bowel. For occasional or difficult to manage constipation your doctor or nurse may recommend Miralax (Polyethylene glycol 3350). Miralax is a different type of laxative called an osmotic laxative. It works by causing water to be retained in the stool, softening the stool so it is easier to pass. These medications can be taken together. There are even some preparations combining stool softeners and laxatives in one pill, such as Senakot-S.

If you have persistent problems with constipation, consider taking softeners and/or a stimulant every day, per the package dosing instructions. Do not use enemas unless instructed by your doctor or nurse. If you do not have a bowel movement in 3 or more days, talk with your doctor or nurse about a stronger regimen. If you have any questions about constipation or need additional information, ask your doctor or nurse.

Diarrhea is the passage of loose or watery stools three or more times a day that may or may not cause pain or discomfort in the abdomen and/or rectum. Because diarrhea can cause many problems, including dehydration, loss of important nutrients, weight loss, and fatigue, it should never be ignored or left untreated.

What Causes Diarrhea?

• Diseases of the bowel
• Some chemotherapy agents, as well as radiation therapy and surgery involving the bowel
• Certain medications
• Bowel infections
• Anxiety
• Certain foods and nutritional supplement drinks
• Severe constipation may result in leakage of stool

What Can I Do to Prevent Diarrhea?

• Eat bland, low-fiber foods such as boiled white rice, cheese, boiled chicken, and mashed potatoes.
• Choose foods high in protein, calories and potassium that are easy to digest such as cottage cheese, eggs, baked potatoes, cooked cereals, bananas, macaroni and pasta, white toast, applesauce, crackers, pretzels and smooth peanut butter.
• Avoid foods that are very high in fat.
• Eat small amounts of food 5-6 times throughout the day, instead of three large meals.
• Add nutmeg to foods in order to slow down the movement of material through the intestines.
• Drink 6-8 glasses of fluid per day. Besides water, consider fluids that replace minerals lost in diarrhea such as: sport drinks (Gatorade®) or soup broth.
• Clear liquids may be easier to tolerate. Try fruit clear juices like apple or cranberry, ginger ale and jell-O.
• Avoid caffeine (cola, coffee, tea), alcohol, milk or milk products, chocolate, dried fruits, beans or popcorn as well as fatty, fried, greasy or spicy foods.
• Avoid very hot and cold beverages.

Care of the rectal area:

• Clean the external rectal area well after each bowel movement. Use warm water and soap, and pat dry with a soft towel. This will help to prevent anal burning.
• Inspect the rectal area daily for red, scaly or broken skin. Report this to your doctor or nurse.
• Soak in a warm bath or use a sitz bath, which delivers a continuous, gentle flow of warm water over the rectal area while sitting on the toilet. Sitz baths can be purchased at your local drug store.
• Water-repellent creams, available over-the-counter at your drug store, such as A & D ointment, are very effective. Ask your doctor about a numbing ointment if the area becomes very sore.

Can I take over-the-counter medications?

You should not take any over-the-counter medications while receiving chemotherapy without discussing them with your doctor or nurse first. This includes all over-the-counter anti-diarrheal medications, such as Kaopectate®, Immodium AD® and Pepto-Bismol®. This is because diarrhea can be caused by an infection or due to a medication you are receiving. Your healthcare team will want to determine this before you take any medication to stop the diarrhea and may give you instructions for taking the medications that are different from those on the package.

When Should I Call My Doctor?

Diarrhea should not be ignored, since it can result in loss of fluid and nutrition and can be uncomfortable. Call your doctor immediately if you have any one or more of the following:

• 6 or more loose bowel movements per day for more than 2 days in a row
• Blood in or around the anal area, in the stool, on the toilet paper or in the toilet bowl
• No urine for 24 hours
• Inability to drink liquids for more than 24 hours
• Fever over 100.5 °
• Weight loss of 5 pounds or more since the diarrhea started
• Swollen and/or painful abdomen

Fatigue is one of the most common side effects reported by people receiving cancer treatments (surgery, chemotherapy, radiation therapy, or other drug therapy). It has been described as a feeling of exhaustion, feeling completely worn out, feeling that their body is "heavy" and difficult to move, or an inability to concentrate. Fatigue can cause physical, emotional, and mental exhaustion. This can be very distressing to the person experiencing it, as it is not caused by overactivity and is not usually relieved by rest, yet many people will suggest rest as a way to decrease the fatigue. People undergoing therapy can have ups and downs, good days and bad days in the energy department. This tip sheet is meant to give suggestions of ways to make the most of the energy they do have and attempt to prevent fatigue from occurring or from worsening.

Unfortunately, doctors do not know exactly what causes fatigue, and think it probably has several different causes, which makes finding effective treatments difficult. There are two ways to treat fatigue that have been shown to be quite effective in clinical trials: exercise and treatment of anemia.

Treatment of Anemia

Anemia, which is defined as a hemoglobin count of less than 12 grams per deciliter (this is a measure of red blood cells) can be a cause of fatigue. Red blood cells contain hemoglobin, which is responsible for carrying oxygen throughout the body. This oxygen is the fuel for muscles, and low levels of it can lead to fatigue.

It is important to remember that not every person with fatigue has anemia, and not every person with anemia has fatigue. Ask your doctor or nurse about your hemoglobin count to see if you are anemic. If a person has anemia, he or she may be able to receive an injection of a hormone called erythropoietin, which stimulates the body to make more red blood cells to increase the hemoglobin level.

Exercise

Sounds crazy, but exercise has been shown to help relieve fatigue and improve quality of life. Now, we aren't talking about running a marathon - a walk around the neighborhood is more like it! Starting this exercise before fatigue sets in can help prevent fatigue from developing. Try to do some type of activity each day. It may help to ask a friend to join you: walk in a local park with nice scenery, listen to music while you walk, or walk to a destination (the store, dry cleaner, etc.). Walk at the mall in bad or hot weather; many malls open early (before the retail shops) just for this purpose. Make it enjoyable. If you already have fatigue, start small, walk just a few blocks and gradually increase the distance over time.

Some other ideas to help manage fatigue

• Allow yourself to rest, but do not overdo it as too much rest can make fatigue worse. A nap during the day should not be longer than 45 minutes to an hour, and you do not want this to interfere with nighttime sleep.
• Conserve energy for when you need or want it most (take it easy in the morning so you can make it to the grandkid's soccer game in the afternoon). Eliminate tasks that are unnecessary (do you really need to make the bed every day?).
• Ask for help!! People want to help; they just don't know what to do. Ask a friend to clean, prepare a meal, run an errand, pick up the kids, or just sit and talk. Consider the person's own personality and strengths when assigning a task, and accept that they may do it differently than you. Consider who likes to cook, who is good with the kids, or who doesn't mind cleaning?
• Know your bad days. If you know the day after therapy is a bad day, don't make plans for that day. If you work every day, schedule treatment on Friday afternoon to allow the weekend to recover.
• Friends and family need to know that even if you make plans, there will be some days were you just can't do it and may have to cancel or adjust the plan.
• Sleep problems can add to fatigue. Try to keep a normal sleep schedule (go to bed and wake at the same time), avoid caffeine and talk to your doctor about a sleep aid if you are having trouble.
• Poor nutrition can worsen fatigue. Carbohydrates and proteins provide the most energy, avoid heavy fatty meals, and try 4 or 5 smaller meals as opposed to 3 larger ones.
• Take time to re-energize with enjoyable activities such as visiting with friends, a meal out with your significant other, listening to music, or doing a hobby you enjoy.
• If you work, talking with your employer about fatigue is crucial. Refer them to websites about fatigue. You may be able to adjust your schedule to work around your energy, or adjust your responsibilities while you are receiving treatment. Talk to your human resources representative about the Americans with Disabilities or Family Medical Leave Acts, sick time and healthcare coverage.
• Complementary therapies such as massage, relaxation techniques, meditation, and yoga have been shown to help relieve fatigue.
• Make sure your caregivers takes time for themselves. They also become fatigued and need to be at their best in order to help you.

Be sure to let your doctor or nurse know if you are not seeing any relief of fatigue or if you begin to feel depressed, feel a loss of interest, or experience increased anxiety as these could be a sign of other issues.

A common side effect of chemotherapy is hair loss (alopecia). This article answers questions about hair loss and offers tips for coping with this condition. Are you looking for information on Radiation therapy and hair loss?

Why does chemotherapy cause hair loss?

Chemotherapy attacks cells in our body that are rapidly growing, such as cancer cells. Some normal cells that also grow rapidly, like hair cells, are also affected.

Does all chemotherapy cause hair loss?

• Many chemotherapy drugs have no affect on your hair. Others cause mild hair thinning or complete hair loss. Your doctor or nurse can tell you if hair loss is expected with your treatment.
• Scalp hair is the most frequently affected, but loss of eyelashes, eyebrows, facial hair, pubic hair and body hair can also occur.
• The degree of hair loss will depend on several factors, including the chemotherapy drug(s) and dose received, how it is given and other treatments.

When will the hair loss occur?

Hair loss usually begins 2 weeks after your first treatment. Some people notice achiness or tingling of the scalp as the hair loss begins. If complete hair loss is expected, the hair may come out in large amounts and is usually complete within 3-7days.

Is the hair loss permanent?

Hair loss caused by chemotherapy is usually temporary. Your hair will start to regrow after your treatment is completed. Some people experience a small amount of regrowth during treatment. Most people experience significant hair re-growth 3-5 months after treatment is completed. It is common for hair to grow back curlier and a slightly different color.

Can I apply ice packs to my scalp to decrease hair loss?

No. This does not prevent hair loss and may actually decrease the ability of the chemotherapy to kill cancer cells in this area.

How should I care for my hair while receiving chemotherapy?

• Even if your chemotherapy treatment is not expected to cause significant hair changes, some precautions are still recommended. If hair thinning is expected, these precautions may decrease damage to your hair:
  • Use a soft bristle brush
  • Use a gentle, pH balanced shampoo
  • Avoid using hair dryers, hot rollers or curling/flat irons too often
  • Avoid bleaching or coloring your hair
  • Avoid permanent waves
  • Avoid braiding or placing hair in a pony tail
  • Sleep on a satin pillowcase to decrease friction.
  • Wear a hat when in the sun
• If your hair is long, cutting it shorter may help decrease the impact of your hair loss when it occurs.
• Some people find it easier to deal with hair loss by shaving their heads before hair loss occurs.
• Be sure to protect your head with a hat to prevent sun exposure on sunny days- and not just in the summer months! This is especially important for men who are less likely to wear a wig or turban/scarf.

Should I get a wig?

• Each person responds differently when learning that they may experience partial or total hair loss. There is no right or wrong response. Do what's comfortable for you.
• If you plan to purchase a wig, make an appointment with a wig stylist before the hair loss is expected so that the color, style and texture of your hair can be matched to a wig. If hair loss begins before your appointment with the wig stylist, save some pieces of your hair and take them with you.
• Types of wigs:
  • Natural hair: More expensive and requires more care
  • Synthetic: Less expensive

Consider scarves, turbans and hats to conceal hair loss.

They are cooler, can be more comfortable and overall require less care than wigs. There are many attractive, stylish, and creative head covers available.

Can I get help paying for a wig for when I lose my hair from chemotherapy?

Some health insurance policies cover the cost of wigs; you just have to know their language—usually they are referred to as "cranial hair replacement." You should contact your insurance company first to see if you have any coverage. You may need to ask your healthcare provider for a prescription in order to get reimbursement.

Secondly, the American Cancer Society in some areas can help to cover the cost of a wig up to $75. You should also see if your oncologist's office has a copy of the "TLC" catalog, which is published by the American Cancer Society and offers a wide selection of lovely wigs, turbans and head coverings.

Why am I so upset about my hair loss?

It is normal to be upset about hair loss from cancer treatment. It may affect how you feel about yourself. It is also a visible reminder of your cancer. Share your feelings with your doctor, nurse, family and friends. There are many educational and supportive programs available.

What is Hand-Foot Syndrome (HFS)?

HFS is a skin reaction that appears on the palms of the hands and/or the soles of the feet as a result of certain chemotherapy agents. It may also be referred to as acral erythema, palmar plantar erythema (PPE), or Burgdorf reaction. Chemotherapy drugs known to cause HFS include: capecitabine (Xeloda®), fluorouracil (5-FU), liposomal doxorubicin (Doxil®), doxorubicin (Adriamycin®), cytarabine (Ara-c®), hydroxyurea (Hydrea®), sunitinib (Sutent®) and sorafenib (Nexavar®).

HFS can start as a feeling of tingling or numbness in the palms and/or soles, which progresses to swelling, redness, peeling skin, and tenderness or pain. If there is no change in the treatment, the hands and/or feet can blister (which can then become infected), becoming very painful and interfering with daily activities. It is very important to notify your doctor at the first sign of HFS. Most patients that develop HFS do so within the first few weeks of therapy, but it can also happen after being on the medication for many months.

What causes HFS?

No one knows for sure, but there are a few theories. The most widely accepted theory is that the small blood vessels in the palms and/or soles break due to use, pressure, or increased temperature, causing an inflammatory reaction and possibly releasing the drug into the area. Many of the suggested prevention strategies or treatments for HFS are based on this theory.

How can I prevent HFS?

Unfortunately, there is nothing that is guaranteed to prevent HFS. The key is to catch it early and adjust the chemotherapy dose to prevent it from getting worse or happening again. It is important to understand that several studies have shown that reducing the dose of chemotherapy to relieve HFS does not reduce the effectiveness of the treatment. Some tips to help prevent HFS include:

• Avoid tight fitting clothing (socks, stockings) or tight shoes. Wear loose, comfy shoes when going out and slippers around the house. Do not go barefoot.
• Avoid activities that rub the skin or put pressure on the palms or soles for one week after treatment (or as often as possible if you are on a daily medication). Any activity that puts pressure on the palms or soles should be avoided, but some examples include: washing vigorously, running, jumping, aerobics, long periods of walking, working with garden or repair tools (i.e. shovel, screwdriver, hammer) or chopping food.
• Apply a moisturizer to your hands and feet liberally and often, but gently to avoid rubbing the skin too harshly. Try applying a generous amount of moisturizer at bedtime and wear a loose pair of cotton gloves or socks to bed to promote absorption of the lotion. Some recommended moisturizers are Bag Balm, Udderly Smooth Cream, Eucerin, and Aveeno. Avoid any lotions or creams that contain perfumes, alcohol or glycerin.
• Avoid hot water such as a hot tub, steam room, hot bath or shower, or when washing dishes. Use warm water to shower or bathe and keep showers/baths short. Use tepid water when washing dishes. Do not use rubber gloves to wash dishes as they can cause further irritation by holding heat against your palms.
• Avoid sun exposure as your skin is very sensitive to the sun while on treatment. Remember, you get sun exposure just sitting in a sunny window! Wear SPF 30 or higher daily or wear long sleeved shirts and pants.

If I develop HFS, what can be done?

The first and most important step is to notify your doctor right away if you notice any numbness, tingling, redness, peeling, swelling, or pain. Your doctor may stop the chemotherapy for a short period to allow the skin to heal, but in many cases, reducing the dose is enough to allow the skin to heal. Dose reduction or a break from therapy is the only thing proven to heal HFS, but some other strategies can help you deal with the discomfort or help HFS to heal faster.

• Soaking the hands and/or feet in cold water or applying ice packs can relieve pain and tenderness. Use a bag of frozen peas or corn, as these can conform to your hand or foot. Do not keep the cold on for more than 15-20 minutes at a time, but you can alternate the ice on and off.
• Continue to use lotions or moisturizers often, but applied gently.
• Elevating the hands or feet may help decrease swelling.
• Some doctors use vitamin B6 (50 to 150 milligrams per day) to help speed healing. Talk to your doctor before taking any vitamins.
• An over the counter pain reliever, such as acetaminophen, may help with the discomfort. Talk to your doctor before taking any medications.
• If you develop blisters, do not break them as they can become infected.
• If you develop a fever (temperature above 100.4), call your doctor right away.

Most importantly: Notify your doctor as soon as you notice any symptoms of HFS! Do not "wait and see" if the symptoms will improve on their own.

What is Insomnia?

Insomnia, or trouble sleeping, is a common problem for patients with cancer. It can present as difficulty falling asleep, multiple awakenings during the night or early morning with the inability to get back to sleep. Insomnia can lead to fatigue, memory and concentration problems, mood disturbances and psychiatric disorders.

What are the causes of insomnia?

• Risk factors include: personal or family history of insomnia, depression, anxiety disorder, advanced age, and female gender.
• Causes can include: medications, recent or prolonged hospitalization, chemo, radiation, or hormonal therapy, pain, hot flashes, nausea and vomiting.
• Easily modifiable causes include: irregular sleep schedule, excessive amount of time spent in bed, napping, engaging in sleep-interfering activities in bed (TV watching or reading), and unrealistic sleep expectations.

How should insomnia be treated?

• Treat the underlying cause of the insomnia, including pain, nausea, depression and hot flashes.
• A combination of prescription medication and psychological therapy may be beneficial for short-term relief.
  • Hypnotic medications are most commonly used, but they can result in residual next-day effects, risk of dependence, and rebound insomnia when stopped.
  • These medications should not be taken for more than 2-4 weeks and do not mix with other sedating agents or alcohol.
• Over-the-counter "sleep aids" should be used with caution.
  • Many of these agents contain antihistamines, which can cause sleepiness, but may be less effective than prescription medications and may have additional side effects.
• Over-the-counter herbal products such as, melatonin, kava-kava and valerian should be used with caution.
  • Herbal products are not required to undergo the same rigorous testing as prescription medications. Their side effects and interactions with other drugs or medical conditions are not well understood.

Non-Pharmacologic Treatments

• Associate bedtime and the bed/bedroom with sleep, establish a bed-time routine and regular sleep-wake cycle.
  • Use the bed for sleep and sexual activities only.
  • No TV watching, reading or eating in bed.
• Go to bed only when sleepy.
  • If unable to fall asleep/go back to sleep after 20 minutes, leave the bedroom and return when sleepy.
• Try not to nap. When necessary, limit naps to 30 minutes and not after 3 pm.
• Use relaxation techniques, such as, deep breathing, stretching, meditation or prayer prior to bed.
• A warm bath, warm glass of milk or cup of chamomile tea at bedtime can help to induce a restful state.
• Avoid excess alcohol-it may cause initial tiredness, but then leads to fragmented sleep.
• Avoid caffeine, heavy or spicy meals, and alcohol for 4 to 6 hours before bedtime.
• Exercise (as little as 20 minutes, three times a week) can promote better sleep, although this should not be done too close to bedtime.
• Keep the sleep environment dark, quiet, cool, and comfortable.
• Reduce anxiety.
  • If having a clock nearby causes anxiety, remove it or put it where it is more hidden.
  • Be realistic about sleep requirements and managing insomnia

For more in depth information on Insomina, go to Insomnia Overview on OncoLink.

 

Mucositis may also be called mouth sores, oral mucositis, or esophagitis. It can range in severity from a red, sore mouth and/or gums to very painful open sores, causing a patient to be unable to eat. Patients receiving radiation therapy to the head and neck area or those receiving certain types of chemotherapy are at risk to develop mucositis. Other causes of mucositis include infection, dehydration, poor mouth care, oxygen therapy, excessive use of alcohol and/or tobacco, and lack of protein in the diet.

Oral mucositis leads to several problems including pain, nutritional problems related to the inability to eat, and increased risk of infection due to open sores in the oral and throat mucosa (lining). It has a significant effect on the patient's quality of life and can be dose limiting (requiring a reduction in subsequent chemotherapy doses).

Signs and symptoms of mucositis include:

• Red, shiny or swollen mouth and gums
• Blood in the mouth
• Sores in the mouth or on the gums or tongue
• Soreness or pain in the mouth or throat
• Difficulty swallowing or talking
• Feeling of dryness, mild burning, or pain when eating food
• Soft, white-ish patches or pus in the mouth or on the tongue
• Increased mucus or thicker saliva in the mouth

Talk to your healthcare team about your risk for developing mucositis. Patients at risk for mucositis should perform oral/ mouth care to help prevent mucositis and special care to help the mouth and throat heal if it does develop.

Suggestions for an oral care plan:

• Check the entire mouth twice a day using a small flashlight and tongue blade (tongue depressor). If you wear dentures, remove them and look under the plates. Report any changes to your oncologist or nurse.
• Rinse your mouth (swish, lightly gargle and spit) before and after meals and at bedtime with either:
  • Salt water (1 tsp of table salt to 1 quart (32 oz.) of water) or
  • Salt and Soda rinse (one-half tsp of salt and 2 tbsp of baking soda in 1 quart (32 ounces) of warm water)
• Use a soft-bristle toothbrush after meals and at bedtime. Soaking in hot water can make the brush bristles softer. If the brush causes pain, toothettes may be used (but these are not as effective as a soft or super soft brush).
• Use non-abrasive toothpaste (or mix 1 tsp baking soda in 2 cups water). Avoid toothpastes with whiteners or other additives.
• Keep lips moist with moisturizers (like Chap stick® or Blistex®). Avoid using Vaseline® or petroleum jelly (the oil base can promote infection).
• Avoid products that irritate the mouth and gums:
  • Avoid commercial mouthwashes and those with alcohol.
  • Limit use of dental floss, DO NOT use floss with platelets below 40,000.
  • Do not use lemon or glycerin swabs or toothbrushes without soft bristles.
• Make dietary changes to prevent mouth sores, decrease pain and discomfort, and promote healing.
  • Increase your fluid intake. Try to drink 3 quarts of fluid per day, unless your doctor or nurse tells you not to do so.
  • Include foods high in protein such as dried beans, poultry, eggs, peanut butter, meat, fish, and dairy products, such as milk, cheese and yogurt (Greek yogurt is higher in protein than others). Nutritional supplement shakes like Ensure®, Boost® can also provide calories and protein.
  • Avoid hot, spicy, greasy or fried foods.
  • Avoid alcohol.
  • Avoid citrus fruits and juices such as oranges, lemons, limes and tomatoes as these may be too acidic. Try apricots, pears or peaches instead.
  • Avoid hard or coarse foods such as crusty breads, crackers, raw vegetables, potato chips, tortilla chips and pretzels.
  • Avoid carbonated beverages.
  • Eat whenever you are hungry, even if it's not a mealtime.
  • Eat smaller, more frequent meals throughout the day, rather than three large meals. Create a nice environment when eating to stimulate your appetite.
• If you wear dentures:
  • Clean dentures daily.
  • Remove at night and whenever possible to expose gums to air.
  • Loose fitting dentures can irritate the mouth and gums and should not be worn.
  • Do not wear dentures if mouth sores are severe.
• Do not smoke cigarettes, cigars or pipes. Do not use smokeless tobacco (chewing tobacco, snuff).

When Should I Call My Doctor?

Mouth sores should not be ignored, since they can cause a decrease in your food and fluid intake, can be a source of infection, and can cause pain and discomfort. Call your doctor immediately if you have any one or more of the following:

• Redness or shininess in the mouth that lasts for more than 48 hours.
• When you first notice any type of cut or sore in the mouth.
• Bleeding gums.
• Difficulty or pain with eating or swallowing.
• Oral temperature above 100.4° F, chills or sweats.
• Weight loss of 5 pounds or more since the mouth sores began.

How Are Mouth Sores Treated?

Mouth sores generally must heal on their own. Continuing to perform good mouth care can help speed the healing process along. If mouth pain is interfering with eating and swallowing, your oncologist may prescribe a mouth rinse which temporarily numbs the mouth or an oral pain medication. In addition, if weight loss from poor intake of food and fluids is a concern, you may be referred to a nutritionist. If necessary, your oncologist may decide to delay further treatments until the mouth sores have healed.

If you have any questions about mouth sores, or need additional information and direction, ask your doctor or nurse.

During cancer therapy, you may notice changes in your skin and/or nails. These changes vary based on the type and dose of therapy you are receiving. Some common changes with radiation therapy include redness, peeling, thin or fragile skin and/or increased sensitivity to sunlight. If you are receiving chemotherapy, you may notice changes in skin tone or pigmentation, very dry skin, rashes, redness, peeling, and/or increased sensitivity to sunlight. If you develop any of these problems, be sure to show them to your oncology healthcare team, as they can be signs of reactions to some medications or can require adjustments to the doses of chemotherapy or radiation. Your fingernails, and possibly toenails, may become discolored, weak, break or lift off, or develop ridges (which will grow out over time). For most people, the nail changes are temporary and will grow back to normal after some time. It may take about 6 months after treatment is stopped for nails to return to prior condition.

General tips for caring for your skin:

• Wash with warm water and a mild, unscented soap.
• You can use your normal deodorant. If a product appears to cause irritation, stop using it and try another brand. You may benefit from a "non-allergenic" product.
• Use an electric razor for shaving to avoid cuts.
• Avoid tight clothing or irritating fabrics, such as wool, that may rub your skin.
• Protect your skin from sunlight. Use SPF 30 or higher, even on overcast days. Wear a hat and long sleeved clothing to cover exposed skin and/or carry an umbrella when out during peak sun hours.
• Protect your skin from extreme cold or heat.

Dry skin is a common side effect. Tips for dealing with dry skin include:

• Use an emollient, which are creams that soften skin and moisturize. Creams tend to be more effective than lotions. Some examples are Eucerin®, Aquaphor®, Nivea®, and Cetaphil®.
• Avoid perfumed or scented lotions, as these can be irritating.
• Apply your moisturizer or cream after your shower or bath when skin is still damp.
• Don't forget to moisturize your lips! Try an eye or face cream to moisten the sensitive skin on your face.
• Drink 8-10 glasses of non-alcoholic fluid a day.

Nails can be affected by cancer therapy too. Here are some tips for dealing with nail changes:

• Avoid cutting cuticles; this can be a source of infection. Use a cuticle cream instead. If you need to cut your cuticle, be sure to clean the clipper before using it.
• Artificial fingernails can harbor bacteria and lead to infections, so you should not use them.
• Nails absorb water and expand, then contract as they dry out. The more they expand and contract, the weaker they become, so wear gloves to protect your nails when doing housework or gardening.
• Keep your hands moisturized and your nails cut short.
• You may want to use nail polish to give your nails extra strength and cover imperfections.
• Soaking your nails in or massaging the nail with oil, such as vegetable or olive, helps replace moisture lost from water exposure. These natural oils lack the alcohol containing fragrance often found in commercial nail products.
• If your nails break or lift off, try to keep them clean and protected. Covering the nail with a band-aid can protect it from trauma. Clean with soap and warm water and apply an antibiotic ointment twice a day.
• If the nail or nail bed appears infected (redness, swelling, warm to the touch), inform your healthcare team.

Nausea is a "sick" or "queasy" feeling in your stomach. Vomiting or "throwing up" often goes along with nausea. Several different things can cause nausea. In this hand-out, you will find some strategies to help prevent and/or manage nausea and hopefully decrease episodes of vomiting.

What causes nausea and vomiting?

• Some chemotherapy agents, radiation therapy, biotherapy
• Anxiety particularly about upcoming treatments or because of negative prior experiences with cancer therapy
• Constipation, diarrhea

What can I do to prevent/ better manage nausea?

• Drink 6-8 glasses of fluid per day, such as broth, Gatorade®, Jello®, fruit juices, water ices, Popsicles®, soda and Gingerale.
• Eat dry bland foods such as crackers, toast, cereals, pretzels and ginger cookies.
• Eat cold foods such as cereals, salads, cold cuts and desserts. The smell of hot foods can exacerbate nausea.
• Eat 6 small meals throughout the day, instead of 3 large meals.
• Chew food well.
• Try peppermint or ginger tea, flat soda or Gingerale.
• Try to have others prepare your meals.
• Rinse your mouth out frequently and before eating to avoid unpleasant sour taste.
• Suck on mints, hard candy, or ginger candy.
• Loosen clothes, get fresh air and sit upright for 1-2 hours after eating.
• Eat in cool rooms with fresh air.
• Breathe through your mouth slowly during times of severe nausea until the feeling passes.
• Take part in activities such as TV, radio, games, music.
• Use relaxation techniques and guided visual imagery.
• Discuss hypnosis and acupuncture with your doctor or nurse.

What things should I avoid?

• Fatty, fried, greasy or spicy foods
• Citrus fruits, juices and tomatoes
• Unpleasant odors, sights and sounds that may aggravate nausea
• Combining hot and cold foods at the same meal
• Your favorite foods during bouts of nausea and vomiting, so you will not associate them with feelings of nausea later on
• Drinking liquids during meals
• Excessive activity and sudden movements

How are nausea and vomiting treated?

Treatment of nausea and vomiting will depend on its cause. Your doctor may recommend:

• Anti-nausea medications to be taken before and after a treatment.
• If nausea occurs in the days/ weeks following treatment, it may be helpful to take an anti-nausea medication about 30 minutes before meals.
• Anti-anxiety medications that prevent or treat nausea and vomiting.
• IV fluids, if dehydration results from nausea and vomiting.

Do not take any medications unless instructed by your doctor or nurse.

When should I call the doctor or nurse?

If you have:

• Bloody or coffee-ground appearing vomit
• Black stools
• Temperature over 100.5°
• Vomited two or more times in a day
• Abdominal pain, cramping or swelling
• Difficulty eating
• Difficulty with drinking 6-8 glasses of fluid a day
• Light-headedness, dizziness or weakness
• Dark urine
• No relief after taking antinausea medications prescribed by your doctor

If you have any questions about nausea and vomiting or need additional information, ask your doctor or nurse. Remember it is always better to call if you have any questions and be sure to let your doctor or nurse know your symptoms so that you can prevent any complications from arising.

This article is designed to give you basic information on pain. If you have other questions or would like additional information, please talk to your doctor or nurse.

What is Pain?

• Pain is whatever the person says it is and exists whenever the person says it does. It is an unpleasant sensation that can be described as causing a vague discomfort or significant distress. It can be stabbing, aching, pinching, throbbing or shooting in nature.
• Acute pain is temporary and lasts for a relatively short time. It is usually confined to one area and is easy to describe.
• Chronic pain lasts for long periods of time. It is not always confined to one area and can be difficult to describe. Often patients with chronic pain "don't look like they are in pain."
• Pain can decrease your activity and appetite, cause difficulty sleeping, and make you feel anxious or depressed.

What Causes Pain?

Pain is caused by damage to the body's tissues. Some common causes include:

• Cancer itself putting pressure on or damaging organs, nerves or bones.
• Some cancer treatments like surgery, radiation, chemotherapy and growth factors.
• Other diseases (e.g. arthritis).
• Infections.
• Blocked blood vessels.

When Should I Call the Doctor or Nurse?

If you have:

• Any new pain, especially if it is persistent or severe.
• An increase in the amount or frequency of pain that you experience.
• Pain that does not improve after taking pain medication or returns before the next scheduled dose.
• Difficulty with side effects from pain medications (e.g. sleepiness, nausea, constipation).
• Pain that is accompanied by numbness, tingling or weakness of arm or leg; difficulty walking, urinating or having a bowel movement.

What is a pain scale?

A pain scale is a way of describing how bad the pain is so that the pain can be treated correctly. On the 0 to 10 scale, 0 means no pain and 10 means the pain is as bad as it can get.

How is Pain Treated?

Medications are usually used to treat cancer related pain. Do not take any medications, even over the counter medications, unless instructed by your doctor or nurse as some can have side effects that are a concern for oncology patients. Some commonly used medications are:

Non-prescription (Over the Counter) Medications

Remember: Do not take any medications, even over the counter medications, without first checking with your doctor or nurse. Take medications only as prescribed.

How often should I take my pain medications?

• Take the medication as prescribed by your doctor. Most pain medications start to work in 30 to 60 minutes and can last up to 46 hours. Other medications, such as the anticonvulsants and antidepressants that are used to treat some types of pain, take a few days to start working.
• It is also important to take the medication as soon as you start to feel the pain. If you wait until the pain is severe, it will take more medication and a longer period of time to control the pain.
• If you require multiple doses a day of narcotic pain medication, your doctor may prescribe a "long acting" pain medication.
• You should keep a record of how often you take your pain medication and how much relief you feel. Share this record with your doctor and nurse so that they may evaluate the effectiveness of your pain management.

Will I become addicted to my narcotic pain medications?

• No. Addiction happens with use and abuse of the drug for nonmedical purposes (getting high). You are taking it for pain, which is what it is for, and taking it as prescribed by your doctor.
• Anyone taking narcotic pain medications on a regular basis for as little as 37 days may experience physical withdrawal symptoms if the medication is stopped quickly. Withdrawal can be avoided by gradually decreasing the amount of pain medication as directed by your nurse or doctor.

If I take pain medication now will it work later "when I really need it?"

Yes. The medication dose can be increased as necessary.

Can I drive while taking pain medications?

Some pain medications can cause drowsiness. Your doctor or nurse may not recommend driving while you are taking pain medications. Please be sure to check with them before you do drive. Avoid or limit the use of alcohol and other sedating medications as these can increase sleepiness especially when combined with pain medications.

Are there any other ways to treat pain?

• If the pain is being caused by a cancerous tumor your doctor may recommend treatments such as surgery, chemotherapy or radiation therapy to remove the tumor or decrease its size.
• A nerve block is a method of injecting a medication into or around a nerve that is causing pain.
• Additional ways to decrease pain include:

• Heat and cold applications
• Massage
• Acupuncture and acupressure
• Relaxation techniques
• Guided imagery
• Biofeedback
• Hypnosis
• Counseling
• Diversionary activities (watching TV, listening to music)

Breakthrough Pain

Breakthrough pain (BTP) refers to a sudden flare of pain that "breaks through" the long-acting medication prescribed to treat persistent pain. These flares may be caused by disease, treatment, or other unrelated factors, such as over exerting yourself. People may also experience breakthrough pain flares as they reach the end of their dose of long-acting pain medication, signaling that this long-acting dose may not be truly adequate and should be reevaluated by your healthcare team.

How is breakthrough pain treated?

With proper evaluation and treatment, breakthrough pain - like most pain - can be successfully managed. It is different from persistent pain and requires a different treatment. Breakthrough pain medication is taken on an as-needed basis, as soon as symptoms are experienced and is prescribed in addition to long-acting pain medication.

What if breakthrough pain is not treated effectively?

Untreated breakthrough pain can have significant consequences for individuals. Without treatment, breakthrough pain flares can harm a person's sense of well-being, interfere with daily activities, and may even interrupt your treatment schedules.

As discussed above, you must call your doctor or nurse if you experience:

• Any new pain, especially if it is persistent or severe.
• An increase in the amount or frequency of pain that you experience.
• Pain that does not improve after taking pain medication or returns before the next scheduled dose of breakthrough medication.
• Difficulty with side effects from pain medications (e.g. sleepiness, nausea, constipation).
• Pain that is accompanied by numbness, tingling or weakness of arm or leg; difficulty walking, urinating or having a bowel movement.

What Is Peripheral Neuropathy?

Neuropathy is irritation or damage to the nerves. Nerves are long, wire-like fibers in our body that transmit information from one area of our body to another. They carry sensations (feeling) of temperature, pressure, pain to the brain and control the movement of your arms and legs. Peripheral neuropathy is a condition in which a nerve or group of nerves have difficulty "communicating" with each other.

What Causes Peripheral Neuropathy and How Long Will It Last?

Certain chemotherapy drugs can cause neuropathy, especially at higher doses or after multiple doses. Chemotherapy medications that can cause neuropathy include: vincristine, vinblastine, vinorelbine, Taxol, Taxotere, oxaliplatin, bortezomib and cisplatin.

Peripheral Neuropathy can occur acutely- meaning during or shortly after receiving a treatment and last a few days, or it can be chronic, that is, long-lasting and persisting between treatments. You may experience tingling, a feeling of pins and needles, or numbness in your fingers or toes, especially in response to cold. The sensation of tingling can be triggered by eating, drinking, or touching something cold or even breathing in cold air. Symptoms often resolve within a few days of treatment, but sometimes symptoms persist. In some, the peripheral neuropathy can become severe leading to constant numbness in the hands or feet, especially for those who have had multiple doses of chemotherapy known to cause neuropathy. It can cause difficulty doing fine motor tasks with your hands like buttoning a shirt, picking up small objects, or cause problems with balance or walking. For people whose symptoms continue after treatment is complete, these often improve or resolve within 6-12 months. Some people do experience these symptoms for a longer period of time and for some, they become permanent.

Occasionally during radiation therapy or surgery, injuries or scarring can occur, putting pressure on nerves and causing neuropathy. And, finally, tumors can put pressure on nerves or release substances that affect nerves.

What are the Common Symptoms of Peripheral Neuropathy?

When neuropathy occurs, one or several of your peripheral nerves have difficulty sensing information. This may lead to such symptoms as weakness, pain, imbalance, or numbness. These symptoms may limit your ability to safely perform daily activities such as walking or dressing.

Call your Doctor or Nurse if you have any of the following symptoms of neuropathy:

• Arms or legs feel heavy, numb or tingling, or feel like "pins and needles"
• Tripping, falling or pain when walking
• Difficulty lifting up foot or toes
• Difficulty picking up or holding objects, or manipulating them in your hand. Difficulty using buttons.
• Cold feeling in arm or leg

• Increased sensitivity to hot and cold

What Can I Do?

• Contact your doctor or nurse immediately if you have any of the above symptoms. Treating nerve damage early and/or potentially lowering the dose or taking a break from the chemotherapy causing the problem may prevent the symptoms from getting worse.
• Wear gloves and warm socks, especially in winter.
• Stay Safe! Since peripheral neuropathy may affect your mobility and ability to sense temperatures, it is important to take some simple precautions to ensure your safety. Ideas include:

• Always wear shoes both indoors and outside.
• If you have neuropathy in your hands, use knives, scissors, box cutters, and other sharp objects with care.
• Protect your hands by wearing gloves when you clean, work outdoors, or do any repairs.
• Make sure your house is well lit.
• Keep a night light on in your room and along the path to the bathroom.
• Cover steps and bathtub/shower with a non-skid surface.
• Clear stairs and hall of objects.
• Mark the edge of the step with a bright color to help determine where the step ends.
• Use handrails.
• Tape down the edges of all throw rugs to avoid tripping.
• Test the temperature of the water with an area of your body that is not affected by neuropathy before any bathing and dish washing.
• Always check your feet and shoes at the beginning and end of each day. You may not feel small pebbles or poorly fitted shoes that can irritate your foot and cause an open sore. Look for any redness or blisters that you may not feel developing.

• If you experience pain, your physician may recommend medications that are used to treat pain caused by nerve damage, such as Elavil, Pamelor, Neurotin or Lyrica. These medications may have side effects and should be closely monitored by a physician.
• Physical therapy can enhance your balance, strength and safety. Braces may be needed to help with extreme muscle weakness and instability.
• Occupational therapy can enhance fine motor coordination, such as writing, and therapists can help adapt your home to account for the changes in your situation.

What is shortness of breath (Dyspnea)?

Dyspnea is trouble breathing or difficulty catching your breath. Some people describe it as an awareness of uncomfortable breathing or a feeling of working very hard to breathe.

What causes shortness of breath?

• Lung or heart disease
• Lung infection
• Blood clot in the lungs (pulmonary embolism)
• Fluid around the heart or the lungs
• Blocked airway
• Radiation therapy to the lung, some chemotherapy treatments and surgery to remove lung tissue
• Fluid in the abdomen
• Low red blood cells
• Anxiety
• Extreme muscle weakness
• Fatigue
• Pain

Call your doctor or nurse when you have:

• New or worsening difficulty breathing or trouble catching your breath
• Discomfort when breathing
• Chest pain
• Discolored or bloody sputum
• Fever greater than 100.5º
• Wheezing
• Faster breathing rate
• Swelling of your ankles or calves
• Trouble sleeping lying down

What can I do to manage my shortness of breath?

• Plan your day to do important or fun activities first. Limit unnecessary activity.
• Take rest periods during activities.
• Perform daily grooming activities (showering, shaving, brushing teeth, combing hair) while sitting down.
• Wear loose, easy to put on clothes.
• Wear flat shoes.
• Keep frequently used items easily available.
• Avoid warm temperatures, unpleasant odors or fumes.
• Eat 6 small meals throughout the day rather than 3 large meals.
• Some positions can help decrease difficulty breathing:
• Try propping your head up while in bed.
• Sit upright and lean slightly forward with arms on table.
• Pursed Lip Breathing can be used to decrease difficulty breathing:
  • Breathe in through your nose to the count of 2.
  • Purse your lips like you are going to blow out a match or candle.
  • Breathe out through pursed lips to a count of 4.
  • Repeat until shortness of breath is relieved.
• Use oxygen as prescribed by your doctor.
• Take medications as prescribed by your doctor that decrease shortness of breath before strenuous activities.
• Perform relaxation exercises and guided imagery.
• Take part in activities such as TV, radio, games and music.
• Use a wheelchair as needed.
• Ask for, and accept, offers of help from family members and friends for cleaning, grocery shopping and cooking.

How is shortness of breath treated?

The treatment of shortness of breath depends on its cause. Your doctor or nurse may recommend:

• Medications that promote red blood cell production (used to treat anemia)
• Red blood transfusions (used to treat anemia)
• Medications to treat pain or anxiety
• Physical therapy to strengthen weakened muscles and teach energy saving techniques
• Respiratory therapy consultation for breathing instructions and techniques

If you have any questions about shortness of breath, or need additional information, ask your doctor or nurse.

What is chemotherapy and how does it work?

Chemotherapy is used to describe medications that treat cancer. In order to understand how these medications work, we need to understand a bit about tumor cells. Tumors are made up of cells that are reproducing at abnormally high rates. Normal cells know to stop reproducing (or dividing) when they come into contact with other cells. In the case of a tumor, this stop mechanism is missing, causing cells to continue to divide over and over. The RNA or DNA of a cell tell it how to replicate itself, and classic chemotherapy (which excludes immunotherpeutics and biological response modifiers) works by destroying this RNA or DNA. The more rapidly the tumor cells are replicating, the better chemotherapy is able to kill the cells.

Cell replication occurs in a series of phases, called the cell cycle. The cell cycle phases are: resting (G0; nothing is happening), G1 (or gap 1; a growth phase), S (synthesis; the replication of DNA occurs), G2 (gap 2; another growth phase), and M (mitosis; the actual division from 1 cell into 2). (See graphic of cell cycle)

Some chemotherapy agents are able to kill a cell during any phase of the cycle (these are called cell-cycle nonspecific), others are only able to kill during a specific phase and are unable to work in the resting phase (called cell-cycle specific). By giving cell-cycle specific agents at multiple time points, they are able to reach the maximum number of cells in the particular phase they affect. Therefore, these are most effective when given in divided doses (over multiple days or time points, for example: once a day for 5 days or every three hours for 4 doses) or by continuous infusion. Cell-cycle nonspecific drugs act against cancer cells at any phase of the cell cycle, including the resting phase. Cell-cycle nonspecific drugs are most effective when given in bolus doses (for example, over 20 minutes once). Cell death may not take place at the exact time the chemotherapy is given. Often a cell must undergo several divisions before it ultimately dies. Because not all the cancer cells die after a chemotherapy treatment, repeated doses are used to continue to reduce the number of cells.

How is chemotherapy given?

Chemotherapy can be given in quite a few ways:

• Orally (by mouth, in pill form)
• Intravenously (IV, through a vein, either as a short infusion or continuously for one or more days)
• As an injection or needle
• Directly into a body cavity (i.e.: the bladder, abdominal cavity)
• Intra-arterially (in special cases, such as limb perfusion treatment for melanoma)

Doctors often combine specific and non-specific chemotherapies so that they complement each other and work together. This combination of different medications is called a "regimen". These regimens are often given names based on first letter of the medications used in them. For instance, CHOP, a common regimen for lymphoma, is made up of cytoxan (cyclophosphamide), adriamycin (hydroxydoxorubicin), oncovin (vincristine), and prednisone. This combination is given in "cycles" (blocks of time). For example, a cycle may be 21 days, and in the case of CHOP, cytoxan, adriamycin and oncovin are given on day 1, prednisone on days 1-5, followed by 16 days off (no treatment), for a total of 21 days, and then it starts over again with the next cycle.

Chemotherapy is considered a "systemic" therapy, meaning that it travels throughout the body, unlike surgery or radiation, which are "local" therapies. Doctors also use terms to describe when chemotherapy is given in the sequence of treatments:

• Adjuvant therapy: therapy given after surgery to reduce the likelihood of the cancer returning.
• Neo-adjuvant therapy: therapy given before surgery to shrink the tumor, allowing the surgery to be more successful.
• Concurrent therapy: when 2 or more therapies are given together, such as chemotherapy and radiation.

How do I know if chemotherapy is working for me?

This answer varies, depending on the type of cancer being treated. Many patients will have radiology studies (CT scans, MRIs, Pet scans) periodically to see if the tumor has responded (either shrunk or stayed the same versus gotten bigger or spread). Some types of tumors can be followed by checking a "tumor marker" in the blood. This is a substance that is either produced by the tumor or by the body in response to the tumor, and can be measured by a simple blood test. If the chemotherapy is working, one would expect the tumor marker to decrease. In some cases, a decrease in a patient's symptoms might be a sign of whether the medications are working against the tumor or not. Talk with your doctor or nurse about how your response will be measured.

The following are the steps generally followed when a patient is preparing for radiation therapy. These may differ slightly depending on the protocol at your treatment facility or if your treatment is being done on an urgent basis, but many of the steps are the same across treatment facilities.

Initial Consultation

Whenever radiation therapy is being considered as part of your treatment plan, a consultation visit will be arranged for you with a radiation oncologist, a physician specially trained in using radiation therapy for treating your type of cancer. The purpose of this visit is to discuss the role of radiation therapy in your treatment, to determine the type of radiation therapy to be used, the treatment plan for your treatment, and to answer any questions you may have. The consultation will take one or more hours, depending on your particular situation. Please bring with you all X-rays, CT Scans, MRIs, laboratory studies, pathology slides, operative reports and other tests that have been performed so that they can be reviewed by the radiation oncologist.

During the visit, your physician will perform a detailed history and physical examination. Your physician may also discuss their findings with other members of a the multidisciplinary treatment team so that all treatments, such as surgery and chemotherapy, will be coordinated to ensure that you can receive the best possible care. At the end of the visit, your physician will review and recommend the role of radiation therapy in your care. If radiation therapy is not recommended, the physician will also discuss the reasons for this.

Informed Consent Process

If radiation therapy is recommended as a part of your treatment, your physician will review in detail the proposed treatment, the reasons for recommending the treatment, and the potential risks and side effects of such treatment. Ample time will be provided so that you have a full understanding of the treatment and related issues and have all of your questions and concerns answered in full. We encourage you to bring family members or significant others with you, as they may be able to help you during the process and have their own questions answered.

Once you feel that you have a full understanding of the proposed treatment, risks, side effects and other possible treatment options, you will be asked to sign a consent form. Before you sign the consent form, you need to make sure that you are comfortable with the explanation that you have received. Even after you have signed the consent, your physician is always available to answer new questions or to provide additional information. You can withdraw your consent at any time for any reason.

CT Simulation

Before radiation treatments begin, you will go through a treatment planning process called "simulation." This process is where your radiation treatment team will precisely identify the area on your body where you will receive radiation. Positioning is extremely important in radiation therapy and your body will be positioned carefully in order to get the best radiation treatment. You will be in the same position during every treatment, and you will need to remain still during the treatments.

A CT scan of the region to be treated is done. Information from the CT scan is used to precisely locate the treatment fields and create a "map" for the physician to design the treatment to fit your specific case. The CT scanner is specially designed to work with the other equipment in the department, and is not a replacement for other diagnostic scans you may have received. The entire simulation takes approximately an hour, though the actual time may vary. Since you will be lying on a hard table under the simulator for most of this time, you may experience some pain or discomfort. Should this occur, tell the radiation technicians. Keep in mind that the time necessary to deliver the actual radiation therapy treatments is only minutes, not nearly as long as the time required for the simulation. In certain cases, an MRI or a PET/CT scan will also be done the same day as the CT simulation. The information provided by these scans is also used to plan your treatment.

CT Simulator

MRI used for simulation

Tattoos & Immobilization Devices

Tattoos

During the simulation visit, it is necessary to put marks on your skin to outline the treatment field(s). These marks are in the form of very small tattoos, which are dots, the size of a pinpoint or freckle, made using India ink. The process of tattooing causes some temporary discomfort. Generally, between 4 and 8 tattoo marks are placed, but sometimes more or less are necessary. In some treatment plans, a second set of tattoos may be necessary. While the tattoos are permanent, because of their very small size, they are not very noticeable. The tattoos are necessary to make it possible for you to bathe or shower on a daily basis without worrying about removing these important marks that show where the radiation treatments are to be delivered. Also, if any additional radiation therapy is needed in the future, the tattoos serve as a permanent record of previous treatments. In very rare instances, tattoos will not be used.

Steps of the tattoo process

While on the CT simulation machine, laser beams are used to mark the treatment area with a marker.

Supplies for tattooing. The area is first cleaned with alcohol.

A drop of India ink is placed on the mark.

A needle is used to puncture the top layers of the skin, getting the ink under the skin and creating the tattoo.

The small bluish dot in the center of this image is the tattoo.

Immobilization Devices

Immobilization devices are made individually for each patient who needs one. Whether or not you need one depends on the area of the body being treated and the treatment plan. These devices can be in the form of a mask that holds the head in position, or “molds” made out of a foam product that hardens and is molded to hold a particular body part in position. These assure that you are in the exact same position for every treatment.

Masks used for immobilization of the head.

Immobilization forms (body molds) for limbs of the trunk.

Technical Planning Process

After simulation, details from the procedure are forwarded to medical radiation dosimetrists and medical physicists. These professionals perform highly technical calculations that will be used to set the treatment machine (linear accelerator). The dosimetrist and physicist work closely with your radiation oncologist to develop the treatment plan, a process that can take up to a week or more.

Physician planning a treatment.

Set-Up

Several days after the simulation and after all calculations have been performed, your treatment can begin.

The treatment machines (linear accelerators) resemble the simulator, but are larger. You will be placed on the treatment table in the same position as you were on the simulator. Proper positioning usually takes 10 to 15 minutes. Once in place on the treatment table, a set of X-ray films will be taken. These films will be matched with the simulation films to ensure that the treatment is going to be delivered the same way as it was simulated. Occasionally, the match is not optimal. In these cases, adjustments will be made and will be checked by your attending physician. In rare cases, more adjustments are required and treatment may need to be postponed. Once the films and positioning are confirmed, a treatment will be delivered. While it seems like a lot of time to plan and set up, it is critical that the treatment be given as it was planned to avoid unnecessary toxicity to healthy tissue and to get the correct amount of radiation to the treatment area.

The actual administration of the radiation treatment typically takes about 5 to 10 minutes. Factors that affect the total length of the treatment include the complexity of your treatment, the particular machine on which you are being treated and how quickly you can be positioned properly for treatment.

Confirmation

Often, your attending physician will be called to see you at the machine to make sure that your position is correct. This should not cause you any concern, as it is a standard part of practice to ensure the most accurate delivery of the radiation treatments.

Daily Treatments

Once the initial set-up is completed, daily treatments normally follow. Treatments are usually given once a day, Monday through Friday, for a number of weeks. Each treatment generally takes only 5 to 10 minutes; however, you will likely be in the department for an hour each day. Sometimes, twice daily radiation treatments will be recommended.

Each day, the technicians will position you on the treatment table, using the tattoos, immobilization devices and laser beams on the machine to get you in the exact same position. Once you are set up for treatment each day, the radiation technician will leave the room to avoid exposing them to radiation. They will be able to see and hear you from a control room just outside the treatment room. They can also give you instructions over a microphone as needed during the treatment. As you lie on the treatment table, the table and linear accelerator may move to get the radiation beams in the correct location. Once your position is confirmed, the treatment is given. The treatment is not painful, nor will you feel anything when the treatment occurs.

Radiation technician monitoring the treatment of a patient from the control room.

Treatment room and linear accelerator machine.

Another view of the treatment room and linear accelerator.

On-Treatment Examinations

At least once a week, repeat X-ray films will be taken to re-confirm proper positioning. These films will also be performed in most cases where there is a change in your treatment field or treatment plan. The X-rays taken during the course of radiation treatment are not used to help measure your progress or response to the radiation. Rather, they are only used to ensure that the position and treatment arrangement is appropriate.

Your radiation oncologist will examine you at least once a week. The examination will take place just before or after your treatment is administered. These examinations are important because they give your physician and nurse the opportunity to evaluate your physical condition, answer any questions that you may have, and plan and coordinate future treatments.

If you are having a problem, you should not wait until your next on-treatment examination. Instead, you should ask to be seen or call the department. Your nurse will review your problem or concern and if he/she cannot help, will contact your physician. If there are any problems at night or on weekends, call the hospital page operator and ask for "the radiation oncologist-on-call."

End-Of-Treatment Visit

Once your radiation treatments have been completed, or a day or two before your last treatment, you will have a final visit with your physician. During this visit, your doctor will perform an examination and discuss follow-up care.

Follow-Up Care

In general, follow-up appointments occur between 2 and 6 weeks after the completion of radiation therapy. After that, we will follow your progress and see you on a regular basis. We understand that you may be seeing many other physicians, but it is important for us to participate in this follow-up process so that any radiation-related problems can be identified early and treated. We will also stay in touch with your other cancer specialists.

What is radiation therapy, and how does it work?

Tumors are made up of cells that are reproducing at abnormally high rates. Radiation therapy specifically acts against cells that are reproducing rapidly. Normal cells are programmed to stop reproducing (or dividing) when they come into contact with other cells. In the case of a tumor, this stop mechanism is missing, causing cells to continue to divide over and over. It is the DNA of the cell that makes it capable of reproducing. Radiation therapy uses high energy x-rays to damage the DNA of cells, thereby killing the cancer cells, or at least stopping them from reproducing. Radiation also damages normal cells, but because normal cells are growing more slowly, they are better able to repair this radiation damage than are cancer cells. In order to give normal cells time to heal and to reduce a patient's side effects, radiation treatments are typically given in small daily doses, five days a week, over a six-or seven-week period. It is estimated that more than 50% of cancer patients will receive radiation at some point during their treatment.

How is radiation therapy given?

Radiation therapy is considered to be a "local" therapy, meaning it treats a specific localized area of the body. This is in contrast to systemic therapies, such as chemotherapy, which travel throughout the body. There are two main types of radiation therapy: external radiation therapy, where a beam of radiation is directed from outside the body, and internal radiation therapy, also called brachytherapy or implant therapy, where a source of radioactivity is surgically placed inside the body near the tumor.

External radiation may also be called x-ray therapy, cobalt therapy, proton therapy, or intensity modulated radiation therapy (IMRT). This type of radiation is administered using a machine called a linear accelerator. Learn more about the steps involved in radiation therapy . Treatment can be given once or twice a day, depending on the treatment protocol being used. Treatments are given 5 days a week for several weeks, depending on the total final dose of radiation that is planned. Patients are given a break from treatment on weekend days to give normal cells some time to heal, thus reducing side effects. A person receiving external radiation therapy is not radioactive or dangerous to the people around him or her.

Internal radiation therapy places the source of the high-energy rays inside the body, as close as possible to the cancer cells. This may be done by implanting "seeds" (small pieces of the radioactive substance) or by using an implanted reservoir, into which a liquid radioactive substance is injected. This delivers very intense radiation to a small area of the body and limits the dose to normal tissue. Internal radiation therapy allows the doctor to give a higher total dose of radiation in a shorter time than is possible with external treatments. The radioactive substances used (also called the "radiation source") typically include radium, cesium, iodine, and phosphorus. Depending on the substance, the implant may be temporary or permanent, although the effect wears off over time in all cases. Depending on the type of radiation source, patients with radiation implants may need to be isolated from visitors for a period of time, so as not to expose others to radioactivity. Patients treated with temporary implants are not exposed to, and cannot expose others to radiation once the treatment is completed because the source has been removed.

What are the side effects of radiation therapy?

The doses of radiation used to destroy cancer cells can also hurt normal cells. Thus the side effects are directly related to the area of the body being treated. For instance, radiation that includes the abdomen can cause diarrhea because of the radiation's effect on the wall of the bowel. While side effects are unpleasant, there are treatments to help deal with them, and most side effects are temporary, disappearing gradually after therapy is complete.

Most radiation oncologists see their patients at least once a week while the patients are receiving treatment. This visit with the healthcare team serves as an opportunity to ask questions, discuss any side effects, and implement and necessary interventions to help relieve the side effects.

The following list includes some of the most common side effects of radiation therapy, but remember, these vary depending on the area being treated and each individual's reaction to therapy. Check with your radiation oncologist and health care team for more details on your specific situation. If side effects become severe, treatment may be put on hold to allow the tissue time to heal before continuing.

• Skin reaction: There may be some reddening of the skin and the area may become irritated, dry, or sensitive. A skin reaction may progress to look like a sunburn. Treat the skin gently to avoid further irritation, and bathe carefully using only warm water and mild soap. Avoid perfumed or scented lotions or soaps, as these may cause further irritation.
• Hair loss: Hair loss may occur in the area being treated. Loss of scalp hair occurs only if radiation is directed to the head. In most cases, the hair grows back following radiation, although it can grow back a different color and/or consistency than before. Hair regrowth will ultimately depend on the total radiation dose that is delivered.
• Nutritional problems: Radiation can affect the membranes of the mouth and/or gastrointestinal tract, and can cause discomfort while swallowing, altered taste of foods, nausea, and diarrhea. Medications are available to treat nausea and diarrhea, and oral rinses and pain medicine may offer some relief for ulcers of the mucous membranes. Commercial mouthwashes should be avoided, since some contain irritating ingredients like alcohol. If this occurs, patients can try foods that are soft or soothing to the throat (such as ice cream or water ice).
• Fatigue: Fatigue or weakness is one of the most common side effects of radiation therapy. Patients are not restricted from normal activity during radiation therapy, and many continue to work while undergoing treatment. However, they should balance normal activity with periods of rest, as needed. Fatigue usually resolves within several weeks after the end of treatment, but may last longer depending on the patient’s overall medical condition and whether or not they receive other cancer treatments after the radiation is complete.
• Neutropenia: A neutrophil is a type of white blood cell that is important in fighting infection. While receiving radiation treatments, the body's number of neutrophils may be decreased, which is called neutropenia. This puts the patient at a higher risk of getting infections. Patients and those around them should wash their hands frequently to decrease the risk of getting an infection. Patients should avoid large crowds or people who are sick (i.e.: have colds). Patients should let their doctor or nurse know right away if they have a fever (temperature greater than 100.4), sore throat or cold, or a sore that doesn't heal.

These side effects are considered acute or short-term side effects because they occur during treatment and tend to resolve within a few months of the completion of therapy. With many therapies, including radiation, there is also a risk of long-term complications. These are problems that arise 5, 10, or more years after a treatment. In the case of radiation, long-term side effects are generally closely related to the area that was irradiated, and include: memory impairment; confusion; personality changes (all with brain irradiation); development of another cancer as a result of damage to tissue; cataracts; dental problems; heart problems (high blood pressure, high cholesterol levels); infertility; and hypothyroidism. Patients should talk with their healthcare team about their specific risks, and how these weigh against the benefits of treatment.

How will I know if radiation is working for me?

This answer varies, depending on the type of cancer being treated. Many patients will have radiology studies (CT scans, MRI scans, PET scans) periodically to see if the tumor has responded (shrunk, stayed the same, or grown). Some types of tumors are able to measured in the blood with a "tumor marker". This is a substance that is either produced by the tumor or by the body in response to the tumor, and can be measured by a blood test. If the chemotherapy is working, one would expect the tumor marker to decrease. In some cases, a decrease in a patient's symptoms may be able to signal if the medications are shrinking the tumor or not. Talk with your doctor or nurse about how your response will be measured.

Loss of appetite is when you do not feel hungry, or you have no desire or interest in eating. If this happens to you during cancer treatment, there are things you can do to improve your appetite. It is important, especially during treatment, to keep yourself well-nourished, maintain your weight as much as possible, and to keep hydrated.

Certain symptoms can contribute to loss of appetite and you should contact your doctor or nurse if you are have any of these symptoms or if your appetite does not improve:

• Constipation
• Pain
• Nausea
• Depression and anxiety

The following tips may be helpful during cancer treatment to maintain weight/nourishment, deal with loss of appetite, and keep hydrated:

Eat high calorie foods and beverages

• Choose foods that will provide the most calories per serving.
• Avoid diet and low fat foods.
• Drink high calorie beverages such as juices, fruit nectars, milk, cocoa, malted milk, shakes, smoothies, Ovaltine®, Carnation Instant Breakfast®, and commercial nutritional beverages such as Ensure® and Boost®. Find out how to make a smoothie and some recipe ideas on the OncoLink website.

Eat small, frequent meals

• Eat small meals throughout the day rather than 3 large meals. Try to eat 5 - 6 mini-meals.
• Schedule your meals and snacks. Eat a few mouthfuls, even if you aren't hungry.
• Serve small portions and use smaller dishes.

Snacks

• Eat high calorie snacks such as peanut butter, cheese, ice cream, puddings, nuts, trail mix, breakfast bars, cereal, yogurt, cottage cheese, deviled and hard-boiled eggs.
• Make a smoothie with fruit and ice cream or yogurt (Greek yogurt is even higher in protein than regular yogurt!).

• Make a shake using ice cream and/or milk Ovaltine®, Carnation Instant Breakfast®, and commercial nutritional beverages such as Ensure® and Boost®.

• Keep snacks readily available to nibble on.
• Carry snacks with you when going to doctor appointments or doing errands.

Try foods

• Try different foods and drinks. Foods that you dislike one day may be appealing on another day.
• Don’t be discouraged if foods you always loved don’t appeal to you right now. This is not uncommon during treatment. You may find new foods interesting and again, just keep trying as things can change from day to day.
• Go to a buffet and sample different foods.

Eat when you are the have the most hunger

You may find it easier to make breakfast or lunch your "main" meal of the day. Focus on the meals when your appetite is best and you are able to eat the most. Often, when going through treatment, your appetite declines during the day.

Soft foods and liquids

Soft and smooth foods are easier to eat and digest when you don't feel well. Try to choose soft foods that are also high in calories such as: casseroles, stews, macaroni and cheese, hearty and creamy soups, eggs, pancakes, waffles, French toast, mashed potatoes, pasta dishes, puddings and ice cream.

Eat high calorie foods first

• At meals, eat the foods with the most calories first. Start with the protein foods (meat, chicken, and fish). Then eat the starches (potatoes, pasta). Then eat the vegetables last.
• Limit your fluid intake during meals to sips, as liquids will fill you up.
• Drink your fluids between meals.
• Also, eat hearty or creamy soups since broth based soups do not have as many calories.

Count calories

Write down everything you eat for a day and add up the calories. This will help you to see how much you are eating. It will also help you identify foods that give you the most calories per serving. The calorie content of foods can be found on food labels. You can also find the calorie content of foods on the internet or you can buy a calorie-counting book at most bookstores or find online trackers.

Other suggestions to help your appetite

• Try to do some physical activity before meals. Stretch or take a stroll.
• Go to a restaurant for a change of scenery.
• Have meals with family and friends.

The fiber in food provides the roughage or bulk that stimulates the bowel. It is generally recommended that you consume at least 25 grams of dietary fiber a day to promote good bowel health. The major sources of dietary fiber are fruits, vegetables, whole grains and dried beans.

However, a common side effect of radiation treatment and many chemotherapies is diarrhea. If you experience treatment-related diarrhea, you should follow a low fiber diet and limit your intake of dietary fiber to about 10 grams a day. A low fiber diet is better tolerated with diarrhea because it will not stimulate the bowel as much and it will be easier to digest.

Nutrients

• Calories 1946
• Protein 101 gm
• Fat 54 gm
• Dietary fiber 10 gm

Esophagectomy is a surgery to remove all or part of the esophagus, which is the tube food moves through on its way from the mouth to the stomach. When the esophagus is removed, the stomach is pulled up into the chest and reattached to keep the food passageway intact. This stretching of the stomach takes away the ability to eat large meals, as there is no longer a large "holding area" for food to be digested. Nutrition is an important part of healing and preventing weight loss after surgery. Patients can experience nausea, vomiting, acid reflux, and dumping syndrome. This article will review some ways to decrease these symptoms. Check with your healthcare team for specific recommendations for your case.

After the surgery, the remaining esophagus may not be able to move foods as easily from your mouth to your stomach. Certain foods can block the esophagus or be difficult to swallow. Some people complain of food "sticking", or have midsternal (behind the breast bone) pain. This may be prevented or resolved by sipping fluids when eating solid foods, chewing foods well, eating soft or chopped foods and avoiding tough, gummy, or stringy foods.

You may also get gastroesophageal reflux symptoms, such as heartburn and reflux of stomach contents, causing intolerance to certain foods, especially acidic, fatty, and very hot or very cold foods. Gas and bloating sometimes occur after surgery. Therefore, you may wish to avoid foods that are known to cause gas.

Each person is different and will tolerate different foods. Only you can decide which foods 'agree' with you and which don't. Below are ideas that may help you to manage your symptoms. The most important guide is how you feel after eating a food.

Diet Basics After Esophageal Surgery 

• Foods to Avoid: 
  • Soft Bread/Rolls 
  • Tough, fibrous, or grisly meats 
  • Foods that cause discomfort 
• Soft, moist foods may be more easily tolerated 
• After surgery, remember that you may have decreased stomach capacity and less tolerance to certain foods. 
• Try eating 6 small, nutrient-dense meals and snacks throughout the day, rather than 3 larger meals. Drink 6-8 eight-ounce glasses of fluids daily. 
• If a food causes you discomfort, wait a week or two then retry the food. 
• Take small bites and chew foods well. 
• Stop eating when you start to feel full. 
• Take a daily multivitamin. Chewable children's vitamins (2 per day) are usually well tolerated. A calcium supplement may be indicated – ask your surgeon. 

Tips to avoid heartburn or reflux 

• Avoid clothing that is tight in the abdomen area. 
• Limit caffeine intake (coffee, tea and cola drinks). Generally, decaffeinated beverages are better tolerated. 
• Avoid chocolate. 
• Limit or avoid alcohol. 
• Sit upright after eating and remain in a sitting position for 45-60 minutes after eating. 
• Avoid eating 3 hours before bedtime. 

These foods may cause heartburn or reflux

• Whole milk, chocolate milk, milkshakes. 
• Regular ice cream, chocolate pudding. 
• Cream sauces. 
• Regular cream soups (prepared with cream or whole milk) and tomato-based soups. 
• Gravies, heavy cream, half and half, butter, margarine, oils, regular sour cream. 
• Citrus fruits/juices (orange, lemon, pineapple, grapefruit, tangerine). 
• Spearmint, peppermint, hot peppers, vinegar, mint teas. 
• Acidic, salty, and extreme temperature (very cold or very hot) foods. 

Tips for avoiding gas and bloating

• Foods which may cause gas and bloating: beans, broccoli, brussel sprouts, cauliflower, cabbage, corn, garlic, lentils, turnips, onions, scallions, peas, sauerkraut, soybeans, apples, avocados, watermelon, cantaloupe, honeydew melon, beer, and nuts. 
• Avoid "air swallowing" activities, such as: using straws, slurping foods, chewing gum, sucking on candy or ice cubes, and drinking carbonated beverages. 

Dumping Syndrome 

Dumping syndrome is another possible concern after esophageal surgery. This happens when undigested food is "dumped" too quickly from the stomach into the small intestine. Symptoms such as nausea, feelings of fullness, and crampy abdominal pain are followed by diarrhea, usually within 15 minutes of a meal. Some individuals may also experience low blood sugar 1 to 2 hours after meals, which may cause weakness, nausea, sweating, hunger, fast heart rate, anxiety, and shaking. 

Please note that some of the suggestions for managing dumping syndrome conflict with recommendations provided for decreasing reflux and for ease of swallowing. Use the suggestions that help you feel the best. 

Tips to Avoid Dumping Syndrome 

• Drink liquids 30 to 60 minutes before or after meals and limit it to ½ to 1-cup servings. Choose unsweetened liquids (100% fruit juice may be diluted). 
• Drink six to eight 8-ounce glasses of non-caffeinated beverages daily. Carbonated beverages should be avoided initially, as they may cause gas and bloating. 
• Eat small, frequent meals. If you experience discomfort after eating, decrease your portion sizes or number of foods eaten at one time. Try to eat three small meals and three between-meal snacks. The evening snack should be eaten 1 to 2 hours before bedtime. 
• Relax at mealtimes, eat slowly and chew your food well. It may be helpful to lie down for 20-30 minutes following meals. 
• All food and drink should be moderate in temperature. Avoid very cold or frozen foods, and very hot foods. 
• Initially, you may experience lactose intolerance (the inability to digest milk sugar). Add small amounts of milk to determine tolerance. 
• The diet should be moderate in fat (fat slows stomach emptying), high in protein, and low in simple carbohydrates (sugar, sweets). 
• If your appetite is poor and weight loss occurs, a liquid supplement may be used. 
  • Examples include: Ensure®, Resource®, or Boost®, which contain sugar. 
  • If avoiding sugar or sweets, Diet Carnation Instant Breakfast® (which contains milk)
  • Resource Diabetic®, Choice® or Glucerna® are possible choices. 
• Eat a variety of foods to assure adequate amounts of vitamins, minerals, calories and protein to meet your needs and prevent weight loss. A multivitamin is recommended. Ask your doctor if you require iron, vitamin B12 or folic acid supplementation after surgery. 
• Avoid foods that are natural laxatives such as caffeine, figs, prunes or licorice. 

Sample Meal Plan

*If no adverse symptoms occur, these foods can be added as tolerated.

The importance of fluids

During cancer treatment, it is very important that you be well hydrated. Water is needed to keep your body functioning. It is needed for regulating your temperature and for removing wastes and toxins. Two-thirds of your body is water. Even mild dehydration can cause some of the following symptoms:

• Fatigue
• Dry mouth
• Feeling light headed
• Headaches
• Irritability
• Constipation
• Nausea

What you should do to avoid dehydration

You should have at least 64 ounces of fluid a day. You can do this by drinking:

• Eight, 8-ounce glasses or
• Six, 12-ounce glasses of fluid a day.

If you have a fever, diarrhea or vomiting you will need more fluids to replace fluids that are lost. Thirst is not always a good indicator of how well you are hydrated. Keep track of the fluids you drink to make sure you are getting enough fluids to stay hydrated.

Good sources of liquids to keep you hydrated

All food contains some fluid. Only those that are liquid at room temperature should be counted toward your goal of 64 ounces per day. The following is a list of foods and beverages that can be counted toward your fluid goal:

• Water
• Milk
• Coffee*
• Tea*
• Fruit or vegetable juice
• Soda*
• Gatorade®
• Soup and broth
• Gelatin
• Ice cream
• Fruit ice
• Popsicles
• Sorbets
• Nutritional supplements, such as Boost or Ensure
• Hot chocolate
• Milkshakes
• Ice cubes and ice chips

* Drinks that contain caffeine will contribute to fluid loss. Use decaffeinated versions of these drinks instead.

If you do not like to drink plain water, try carbonated waters, flavored waters, add a slice of lemon or lime, or mix water with fruit juice.

If you have severe vomiting and can't keep fluids down, try sucking on ice cubes and ice chips, and taking small sips of fluids frequently. This will be better tolerated, than drinking 6 or 8 ounces at one time.

Table to Help You Keep Track of Your Fluids

• 1 quart = 4 cups = 32 ounces = 960ml
• 1 pint = 2 cups = 16 ounces = 480 ml
• 1 cup = 8 ounces = 240 ml
• 1/2 cup = 4 ounces = 120 ml
• 1/4 cup = 2 ounces = 60 ml

Why protein is important

Protein is very important to keep your body functioning and is also needed for growth and repair. Protein is found in almost all body cells and has many roles such as:

• To form and maintain muscles, tissues, red blood cells, enzymes, and hormones
• To carry many body compounds and medications
• To maintain fluid balance
• To fight infections and strengthen the immune system

In general, your diet will provide enough protein. However, during cancer treatment (such as surgery, radiation therapy and chemotherapy) your protein requirements may increase. It is important to be aware of food sources of protein and to include these foods at meals and snacks.

Your protein requirement

To come up with a quick estimate of your protein requirement:

• Take your weight (in pounds) and divide by 2
• The number you get is the approximate number of grams of protein you need daily

For example: If you weigh 180 pounds, 180 ÷ 2 = 90 grams of protein daily

If you are receiving chemotherapy, radiation or surgery you may need more protein. Your dietitian can help you figure out your protein needs during treatment.

Food sources of protein

Protein is found in both animal and plant foods. Animal sources of protein include meat, poultry, fish, eggs and dairy products. Plant sources of protein include nuts, seeds, tofu and legumes (dried beans, peas and lentils). Grains (cereals, breads and rice) and vegetables contain a little protein. Fruits and fats do not have any protein.

Protein content of foods

Food Serving Grams of Protein

• Meat - beef, pork, lamb 3 oz 21
• Poultry - chicken, turkey 3 oz 21
• Fish 3 oz 21
• Egg or ¼ cup liquid egg 1 7
• substitute
• Milk 1 cup 8
• Yogurt 1 cup 10
• Cottage or ricotta cheese 1/2 cup 12
• Hard cheese 1 oz 8
• Dried beans and legumes ½ cup 8
• Tofu ½ cup 14
• Nuts ¼ cup 7
• Peanut butter 2 Tbs 7
• Vegetables ½ cup cooked 2
• Starches -1 sl bread, ½ cup rice 2
• or pasta, 1 serving cereal
• Fruit 0
• Fats 0

High protein snacks

• Cheese with crackers, vegetables or fruit
• Trail mix (mixture of assorted nuts and dried fruits)
• Granola, energy and breakfast bars
• Cereal and milk
• Yogurt
• Cottage cheese or ricotta cheese with fruit
• Chicken, tuna or egg salad on crackers
• Deviled and hard-boiled eggs
• Hot cocoa (if using instant cocoa replace water with milk)
• Puddings and custards
• A glass of regular, flavored or malted milk
• Nuts
• Peanut butter on crackers
• Hummus (a dip made with garbanzo beans)

Ways to add protein to food

• Shredded cheese - sprinkle over vegetables, potatoes, noodles, casseroles, soups or salads
• Milk - use in place of water when making soups or cooked cereals
• Hard-cooked eggs - chop and add to salads, vegetables or casseroles
• Left-over meat, chicken or fish - add to soups, salads or omelets
• Nuts and seeds - sprinkle over vegetables, fruits, salads, yogurt, cereal and pasta
• Dried beans - add to salads, pasta or soups

Calories and protein

To make sure that the protein you eat is used for important body functions you must eat enough calories. If you loose weight, your body will use protein for energy rather than to support important body functions.

Protein supplements

If you are not eating enough protein you may need to use protein supplements. The cheapest and easiest protein supplement is dry skim milk powder. Mix the powder with liquid milk to increase the protein content. Also, add dry milk powder to any creamy foods such as mashed potatoes, casseroles, scrambled eggs and creamed soups. You can also add it to pancake and muffin batter. Use pasteurized egg substitute in shakes and recipes as a protein supplement. However, you should never use raw eggs, due to the risk of getting salmonella.

Double strength milk recipe:

• Blend 1-cup dry skim milk powder into 1-quart milk.

You can buy protein supplements at drug stores and health food stores. They are available as powder that can be mixed with liquids or foods.

If you are lactose intolerant

Low lactose milks (Lactaid©), cheeses and ice cream are available. People who are mildly lactose intolerant can often tolerate yogurt and fattier dairy foods such as cheese and ice cream. Soymilk and rice milk, which are non-dairy products, can be substituted for milk. Lactaid© pills, which contain the enzyme that digests milk, can be taken before eating dairy foods. They are available at most drug stores.

What are Taste Changes?

People going through cancer treatments such as chemotherapy and radiation therapy frequently report changes in taste. In fact, one study found that this occurred in 66% of patients. These changes can include food and drinks tasting like metal, an aversion to certain foods, or a change in the taste of their favorite foods.

Radiation therapy to the head and neck area can make taste problems worse or cause xerostomia (dry mouth caused by a decrease in or loss of saliva), which can add to the problem. Dental problems can add to taste changes, so a visit to the dentist may be in order (be sure to check with your oncologist to identify the best time during therapy to see a dentist).

Although the problem with taste changes typically resolves after therapy is stopped, it can persist for a year or longer after therapy. There are some things you can do to help manage taste changes and, in the process, decrease or prevent weight loss.

• Rinse your mouth before meals with salt water or ginger ale or brush your teeth.
• Avoid cigarette smoking, this can make taste changes worse.
• Try making the flavors more powerful with the addition of spices, herbs, marinades, lemon juice, sauces or pickled foods.
• Choose foods with strong flavors such as lemon (lemon meringue, a lemon marinade, etc.).
• Avoid any acidic additives if you have mouth sores. While it seems logical that spicy foods should be avoided with mouth sores, research has found that capsaicin (which is derived from chili peppers) can be used to treat pain from mouth sores, so it may be helpful for some.
• Try to overpower a metallic taste with lemon drops, hard candy, mints or gum. These can also help stimulate saliva for those dealing with xerostomia.
• If a metallic taste is your concern; use plastic utensils and drink beverages from bottles, not cans.
• Beef is particularly prone to tasting metallic, so you may want to replace it with other forms of protein like chicken, eggs or dairy products.
• Make meal time a social and enjoyable experience. Invite your visitors to come at meal time and eat with you.
• Consult with the cancer center dietitian for help with food selections.

Many men may have difficulty obtaining or maintaining erections after various forms of cancer treatment. Surgery and radiation therapy to the pelvic area, hormonal therapy, chemotherapy, and various medications may all significantly impact a man's ability to obtain/maintain an erection. Erectile dysfunction can cause significant angst and/or anxiety for the man and his partner.

Since this is a common complaint after cancer treatment, you should feel at ease that your physician has seen many patients with similar problems. You should not hesitate to discuss these concerns with your physician. After a thorough history and physical exam, your doctor may recommend specific testing or changes in your medications. There are medical treatments to help patients restore and maintain erections. Only your physician can determine if you will benefit from a specific treatment. These treatments may include the following:

• Vacuum Constrictive Devices (VCDs): This is a pump that you place over the penis. As air is pumped out of the cylinder, blood is drawn into the penis to produce an erection. A ring slides over the base of the penis to keep the blood in the tissues to maintain an erection for up to half an hour.
• Oral Medications: A number of oral medications are now available to help patients attain and maintain an erection. These medications include Viagra®, Cialis®, and Levitra®.
• Penile Injections: Drugs may be injected into the side of the penis, which promote blood flow. The most common drug used for injection is Prostaglandin E1 (Caverject). The medication typically needs to be adjusted to the correct dose based on how long the erection is maintained.
• Muse System: This system also utilizes Prostaglandin E1. Instead of an injection, a small suppository is placed into the urethra (opening in the penis where urine & semen exit) using a specialized applicator.
• Penile Prosthesis (Implants): There are various types of penile prostheses which a man can consider. Some are malleable rods that are placed in the penis. Most men now utilize a type of inflatable prostheses, which can be inflated and deflated as needed.
• Sex Therapy: This is recommended for patients with anxiety based erection problems. Typically the patient and their partner are both involved in the therapy sessions.

Lifestyle interventions such as weight loss, exercise, and smoking cessation, may also help.

There are advantages and disadvantages with each type of treatment. There are also different side effects for each treatment. If you are experiencing erectile dysfunction, you should discuss the pros and cons of each treatment option with your physician.

Vaginal dryness and related painful intercourse (called dyspareunia) is one of the most common problems reported by women who are receiving or have completed cancer treatments. This sheet provides the facts on products and suggestions to relieve this common problem.

Vaginal lubricants

There are numerous vaginal lubricants on the market, including AstroGlide, Durex, Femglide, KY, and Wet, as well as less expensive store brands carried by many pharmacy chains. These products are designed to be used just before or during sexual activity. Be sure to read the labels and choose products that are water-based / water soluble, or silicone-based. Petroleum-based products are available, but these can damage the latex in condoms or diaphragms, making them ineffective. Petroleum can also act as a harbor for bacteria in the vagina and lead to infection. Ask the store pharmacist for help if you have questions about ingredients. Lubricants are available in standard preparations, edible flavors, and warming liquids. These products can be purchased through many Internet sites, if privacy is a concern.

Vaginal Moisturizer

Replens is a product known as a long-lasting vaginal moisturizer. It is designed to help vaginal tissue regain elasticity and moisture. Replens should be used 3 times a week for a minimum of 3 months, as it can take this long to achieve the desired effects. In addition, women can also choose to safely use Replens or a vaginal lubricant prior to intercourse for added effect. This product is not estrogen-based (so it is safe for breast cancer patients), but studies have found that it can work as well as an estrogen-based cream in relieving dryness. Ask the store pharmacist for help if you have questions. These products can also be purchased at many Internet sites, if privacy is a concern.

Vaginal Estrogen Products

Vaginal estrogen creams are inserted in the vagina, generally 2-3 times a week at bedtime. These products are rapidly absorbed by the vaginal tissue, resulting in elevated estrogen levels in the body for the first 3-4 months. After that time, absorption is less, but still results in higher than normal post-menopausal estrogen levels. Given the risk of estrogen stimulating breast cancer growth, these products are not used in breast cancer survivors, but can be an option for others.

Estring is a silicone ring that is inserted and remains in the vagina for three months. Vagifem is a tablet, inserted in the vagina once a day for 2 weeks, then twice weekly. Both products slowly release a low dose of estrogen, resulting in relief of vaginal dryness. Although the levels of estrogen in the body are lower with these preparations, they are not zero. The risk to breast cancer survivors is thought to be low, but long-term studies have not been done. Most oncologists are comfortable prescribing these products for breast cancer patients, realizing the importance of quality of life and the low risk involved. These products should not be confused with Femring, which is a form of hormone replacement therapy, which releases higher doses of estrogen.

In addition, in women with a uterus, there is concern that the lack of progesterone in these preparations could lead to endometrial changes. Studies have not confirmed this, but some physicians will follow women who use these products with vaginal ultrasound to detect any changes early.

Soy Products

Soy products have shown various benefits, including lowering cholesterol and blood pressure, and may provide some relief for mild hot flashes during menopause. Although it would seem likely that natural estrogens, such as soy, would help relieve vaginal dryness, studies of these products have not shown a benefit for vaginal dryness or atrophy (thinning or wasting of the vaginal tissue).

As for soy and breast cancer, most studies have actually found a preventive effect when used as a food or powder supplement in moderate amounts (up to 25 grams a day). Some laboratory studies have shown that higher doses may stimulate breast cancer growth, but results vary so it is hard to get a definite answer. If you want to try soy products and are concerned about breast cancer risk, you may want to stick to soy found in food products, which would make it less likely to exceed the 25 grams a day.

Other Suggestions for Dealing with Painful Intercourse

Lubrication may not always be the primary or only cause of painful intercourse. Sometimes surgery or radiation therapy may have left scars or limited flexibility, causing discomfort. Experimenting with various positions may help discover a position that is comfortable. Changing the view that sexual activity has to be intercourse is another way to enjoy intimacy with your partner without pain.

Anxiety and tension can result in an inability to relax and enjoy yourself. Try creating the right environment: candles, lighting, music, or a glass of wine can help create the "mood". Of utmost importance is communication between partners. Without knowing what is painful, your partner cannot help in finding the solution.

Other Helpful Links:

Read other OncoLink articles on Sexuality

Eyes on the Prize: A web community for women dealing with gynecologic cancers

During and after receiving treatment for cancer, women of all ages, with early and advanced diseases, will have concerns and questions about sexuality and sexual activity. It is common for women with different types of cancer to struggle with their body image; have less desire for sexual intimacy and/or find that penetration during sexual activity has become painful. Even if your health care providers do not ask about this normal and important aspect of health, you should not hesitate to discuss your feelings or ask questions about the impact of cancer treatments on your sexual health. This article attempts to answer common questions that arise, but certainly does not address every question. As with any concern, talk with your health care providers about your particular situation.

What Concerns Could Arise?

Some women experience a loss of desire for sex, an inability to have an orgasm, experience pain during sex or just do not find sex pleasurable. Sexuality is an important factor in quality of life for many women. Know that these concerns are not uncommon and your healthcare team can provide guidance. Write down your questions and concerns so you don't forget to ask about them. If your provider cannot help, ask them to recommend someone who can.

Can I have sex during treatment?

There are a few factors that determine if sexual activity is safe during treatment.

• In general, sexual activity is fine during treatment as interest, energy and comfort levels allow. While women may not feel up to sexual intimacy after surgeries or during chemo and radiation; hugging, holding hands and massages may feel good and be comforting.
• If you had surgery involving the pelvic area (gynecologic cancers, colorectal and anal cancers), you may need to allow extra time for healing before having sex that involves vaginal or rectal penetration (with penis, fingers, toys, vibrators or dilators). If you are being treated for an oral cancer, use caution during oral sex.
• If you have a low white blood cell count or low platelet count (concern arises with platelets below 50,000), you will need to refrain from any sexual activity that involves vaginal or anal penetration. This is because there is an increased risk of infection or bleeding when your counts are low.

Tips for healthy and safe sexual activity:

• Be sure to use a reliable form of birth control to prevent pregnancy- even if you think your periods have stopped or your fertility has been affected.
• Chemotherapy can be excreted in vaginal secretions for 48-72 hours after a treatment. You should use a condom for oral sex or intercourse during this period to prevent your partner from being exposed to the chemotherapy. (This includes IV and oral chemotherapy).
• Think outside the box about sexual activity - it does not have to involve intercourse or oral sex. Use kissing, touching, caressing to satisfy each other.
• Keep communication open. Talk about what feels good and what doesn't; communicate with your partner when you are tired or uncomfortable.
• Cancer surgery may result in a particular position being painful. Try different positions to find what is best for you and your partner. For example, if lying on your back during penetration is painful, having both partners lying on their sides may be more comfortable.
• Talk with your healthcare team about coping with changes in your body image and sexual health. For some, talking with other women in a support group can help. While others may find more intensive help from a mental health provider, with expertise in working with women with cancer, useful.
• Some practical tips for body image concerns include exercise, maintaining a healthy weight, dressing in clothing that makes you feel attractive, wearing pretty undergarments or learning beauty techniques to manage side effects such as facial coloring, eyebrow loss, etc. (see resources below). For women with an ostomy, using an ostomy cover or camisole as camouflage can help with concerns about others noticing the bag (do an online search for ostomy covers).

Coping with Vaginal Changes During and After Cancer Treatment

Vaginal dryness, which can cause intercourse/penetration to be painful, is one of the most common problems during and after cancer treatment. Vaginal atrophy is an inflammation, shrinking and thinning of the vaginal tissue. These are most often caused by a lack of estrogen to the vaginal tissue. Surgery can lead to a shortened vagina. Radiation therapy that includes the vaginal area can cause fibrosis (scarring).

There are a few steps that can help alleviate the discomfort caused by vaginal changes:

• Use a vaginal lubricant during sexual activity (such as K-Y Jelly, Astroglide). There are many varieties or lubricants available; some contain fragrances, flavors or herbal ingredients. These can be irritating to some women.
• Avoid Vaseline or skin lotion as a lubricant. These can damage condoms and may raise the risk of yeast infection.
• Apply the lubricant to your vaginal area and your partner's penis, fingers or any sex toys you may be using for penetration.
• Use a vaginal moisturizer, such as Replens or K-Y SILK-E. These should be applied 2-3 times a week, regardless of sexual activity. These are estrogen free and work to help the vaginal tissue regain its natural moisture. They can also be used in conjunction with lubricants.
• For some women, vaginal estrogens may be effective. These come in several forms, including a cream (typically used daily for 3 weeks, then 2x a week), tablet (inserted 2x a week), and a ring that excretes estrogen slowly over a 3-month period. Most of the estrogen is absorbed locally, with only a small amount entering the bloodstream. Discuss this option with your oncology team, as some women with a history of a hormonally based tumor are advised to avoid these products.
• After radiation therapy, using dilators helps to keep the vagina open and decreases scarring, making intercourse/penetration as well as vaginal exams more comfortable. Learn more about dilator use after radiation therapy.

How to Get Started

You've had a period of time without sex and now feel ready to rekindle your sex life, but how do you get started? Set the mood- what sparked romance for you and your partner before cancer? Music, a romantic meal or an evening out? Relax and don't pressure yourselves to have sex the first go at it. Take your time, enjoy each other and most of all, communicate.

Sexuality After Cancer

Sexuality encompasses much more than sex; it includes the physical, psychological, emotional and social aspects of sex. In the real world, this means how you see yourself, how does your partner view you, how do you date after cancer, how do you fulfill your need for sexual relationships after cancer and so much more.

How cancer affects your sexuality is different for every woman. Some find the support they need through their healthcare team, their partner, friends or fellow survivors. You may find the support you need to reconnect with your own sexuality through a support group or a close friend. There are a number of online groups that host discussion boards where you can "talk" about concerns with someone who has been there.

For those that find things more difficult, a mental health provider can help you cope with the physical and emotional trauma cancer brings and determine how to move forward, whether with a partner or looking for one. Look for a therapist with expertise in working with people with cancer and/or sexual and relationship issues.

Resources & Further Reading

• The American Cancer Society's Sexuality for the Woman with Cancer and the Look Good...Feel Better Program (teaches beauty techniques to cope with treatment side effects).
• NCI's "Sexuality and Reproductive Issues" and "Facing Forward: Life After Cancer" (Includes good information on communicating with your partner).
• Articles from CURE magazine (curetoday.com): Finding Sensuality After Cancer and Under the Sheets.
• "Seven Tips for Dating after a Cancer Diagnosis" by Helen L. Coons, PhD, ABPP, Coping with Cancer Magazine.
• LIVESTRONG: Female Sexual Functioning After Cancer

Groups with discussion boards, chat rooms or email support lists:

• Eyesontheprize.org - Support & Information for Gynecologic Cancer
• National Cervical Cancer Coalition
• Breastcancer.org
• StupidCancer.org - a group geared toward the issues facing young adults with cancer.

Each time radiation therapy is delivered, small amounts are absorbed by the skin over the area being treated. About 2 to 3 weeks after your first radiation treatment, you may notice redness and irritation similar to a sunburn. These changes are an expected part of your therapy and are temporary. Your team will examine your skin periodically. In some cases, you may need to stop radiation treatments for a short period to allow the skin to heal. If the reaction becomes severe, you may need special care to help the area heal.

All patients receiving radiation therapy should take special measures to protect their skin from any additional damage, including:

Be extra kind to the skin in the area being treated.

• Keep your skin clean and dry.
• Wash skin in the treatment area with lukewarm water and a mild soap, such as Ivory® or Dove®. Avoid rubbing, especially with a washcloth.
• Dry skin gently. Pat, don't rub, using a soft towel.
• Do not use any lotions, ointments, perfumes, creams, or cosmetics unless told to by your radiation oncologist or nurse. If you are being treated under one or both arms, do not use any antiperspirant or deodorant prior to your treatment. Never use zinc oxide on skin during radiation therapy.
• If your treatment is to your head, use a mild shampoo, such as baby shampoo, and try not to shampoo every day. In addition, do not use hot curlers or a curling iron, and be gentle when combing or brushing hair. For additional information on this subject, go to Hair Loss/Alopecia.
• Use cornstarch on skin folds to prevent rubbing and chaffing.
• Wear loose fitting clothes. Do not wear any restrictive garments, such as girdles.
• Use gentle detergents, such as Woolite® or Ivory Snow®, to wash your clothes.
• Do not starch your clothes.

Avoid anything that could cause injury to the skin in the area being treated.

• Do not scratch your skin.
• Avoid using adhesive tape. If bandaging is necessary, use paper tape. Try to apply the tape outside of the treatment area.
• Use an electric razor if you must shave in the treatment area. Do not use a preshave lotion, aftershave or hair removal products.
• Do not use heating pads, heat lamps or hot water bottles.
• Do not use ice bags.
• Practice sun safety as exposure to the sun as this can cause additional skin damage. Wear sunscreen with at least SPF of 15 every day. Wear protective clothing, including long sleeves and pants and a hat when outdoors. Avoid the sun during peak hours (10am to 2pm). Follow these tips in the winter months also!

Check the skin in the treatment area daily. Report any cuts, open areas or significant changes to your radiation oncologist or nurse.

How are skin reactions treated?

Minor skin reactions caused by radiation therapy do not require any special treatment. If, however, the skin reactions become worse or if you sustain additional damage to your skin, treatment may be necessary. Your radiation oncologist may decide to stop treatments for a period of time in order to allow the skin to heal. Your radiation team will tell you how to care for any skin reactions. Do not apply anything to the area without checking with your radiation team first.

If you have any questions about skin reactions, or need additional information and direction, ask your doctor or nurse.

What is urinary incontinence (UI)?

UI is the inability to control the flow of urine. This can range anywhere from leaking a little urine when you strain, sneeze, or cough, to a total lack of control of urine. UI is not painful. If you experience pain with incontinence, notify your doctor, as this can be a sign of infection.

UI can be caused by pregnancy, childbirth, obesity, and surgery or radiation therapy for gynecologic or pelvic cancers. These events can change the nerves and muscles used to control urine flow. There are things you can do to improve your bladder health and strengthen the muscles in your pelvic floor (the muscles and supportive tissue located below the bladder).

How can I correct or prevent UI?

• Make a bathroom schedule for yourself. Urination typically occurs every 3-4 hours. Set routine times to go to the bathroom to help re-train the bladder.
• Limit your intake of caffeine, alcohol, carbonated drinks, and spicy foods. These can irritate the bladder, leading to UI.
• Make time for a “just in case” bathroom stop before leaving the house, getting in the car, or going to bed.
• Avoid drinking large amounts of fluids before going somewhere where you will not have ready access to a bathroom.

Kegel Exercises

Kegel exercises are used to strengthen the muscles of the pelvic floor, decreasing episodes of UI. A doctor, nurse, or therapist can help you make sure that you are doing the exercises correctly. The area between your hip bones is the pelvis, and this is where the pelvic floor muscles are located. To strengthen them, you want to tighten the two most important pelvic floor muscles. This can be done by tightening as if you were trying to stop the flow of urine and tightening as if you were trying to stop passing gas.

Tighten the pelvic muscles and hold for a count of 3. Then relax for a count of 3. Work up to 10 to 15 repeats each time you exercise. Do your pelvic exercises at least three times a day. Performing the exercises in three different positions (lying down, sitting, and standing) makes the muscles strongest. You can exercise while lying on the floor, sitting at a desk, or standing in the kitchen. You may not feel your bladder control improve for 3 to 6 weeks, so be patient.

Diagram of the pelvic floor muscles used for Kegel exercises.

Other Tips

• Protect your pelvic muscles by tightening them before a strain, such as sneezing, lifting, coughing.
• Biofeedback helps you become aware of your body's functioning so that you can learn to control some of those functions. This can be taught by a therapist.
• Small doses of electrical stimulation can be used to strengthen the pelvic floor muscles. Electrodes are placed in the vagina or rectum to stimulate the muscles to contract, in turn “exercising” them.
• Talk to your therapist about devices available to help with UI.

If you receive radiation therapy to the pelvis, your doctor may recommend that you use a vaginal dilator to improve the elasticity of your vagina. This article will tell you what you need to know about using the dilator. Your doctors, nurses, and physical therapists can also answer any questions or concerns you may have. Don't hesitate to ask them.

About Vaginal Dilators

A vaginal dilator is a smooth plastic or rubber cylinder, similar in shape to a tampon. It is about 6 inches in length and comes in three different widths. Using a vaginal dilator can prevent and reverse the vaginal shrinkage that occurs as a result of radiation treatment.

After radiation treatment to the pelvic area, scar tissue begins to form in the vagina and the tissue becomes less elastic and dry. There may be some shrinking of the vagina and vaginal opening. This can make it difficult for the doctor to perform check-ups. It can also make sexual intercourse difficult and uncomfortable. The vaginal dilator works by stretching the scar tissue that has formed in the vagina. This helps to make intercourse more comfortable, but also to make physical exams by your physician more comfortable as well.

Use and Care of Your Dilator

When to Use the Dilator

• You can start using the dilator 2-4 weeks after your last radiation treatment (after vaginal irritation has decreased).
• For the first month, use the dilator 5 days a week.
• For the 2nd to 6th month, use the dilator 3 days per week.
• After 6 months, use the dilator 2-3 times per week for life. This will keep the vagina healthy and supple.

How to Use the Dilator

• Wash the dilator with warm soapy water and rinse well.
• Apply a water-soluble lubricant (K-Y Jelly, Fem Glide) to the rounded end of the dilator and a small amount to your vaginal opening. Do not use oil based lubricants, lotion or Vaseline.
• Lay on your back with your knees bent and slightly apart. You may also lay lie in a bathtub of lukewarm water.
• Relax the muscles of the pelvic floor. You may try a couple of squeezes (like you are trying to stop urine flow) and then allow those muscles to relax. Also, take a few deep breaths. While you inhale, your belly should expand. The belly should fall when you exhale.
• Using your fingers, separate the skin outside the vagina as you would when inserting a tampon. Place the rounded end of the dilator into the vagina as far as possible. Use firm and gentle pressure do not use force. Sometimes, rotating the dilator makes it easier.
• Hold the dilator in place for 20-30 minutes while keeping muscles relaxed. Again you may try a couple of gentle squeezes (like you are trying to squeeze around the dilator – don't squeeze so hard that you push the dilator out) and then allow those muscles to relax. Also, take a few deep breaths. While you inhale, your belly should expand. The belly should fall when you exhale.
• Perform this exercise once daily.
• Alternate Method: You may also try this method depending on what your doctor recommends and how well you are able to tolerate it:
• Insert the dilator, hold for 5 seconds while you take a couple deep breaths, then remove
• Repeat the insertion and removal for a 10-15 minute period
• Remove the dilator. Wash your hands and the dilator with warm water and soap. Let the dilator dry completely to prevent bacteria build-up.

What to Expect

It may take 8-12 weeks to feel an increase in the size of the vaginal opening and a softening of the tissues. Be patient. You may find that your emotions are somewhat sensitive as you begin this process. It may help to talk to your doctor, nurse or therapist. For most women, there is a period of adjustment, and then using the dilator becomes more routine.

Again, feel free to talk to your health care team if you are having difficulty. They are there to help you.
At first you may have a small amount of bleeding or spotting. This is normal and should stop as the vagina begins to stretch. The spotting may also continue after using the dilator and after intercourse for a couple months. Heavy bleeding or excessive pain is not normal and you should contact your doctor if you experience this.

Call you physician if you have signs of an infection such as:

• Vaginal itching
• Fever
• Vaginal discharge with strong odor
• Abdominal pain

Other Ways to Stretch Vaginal Scar Tissue

Regular sexual intercourse, about 3 days per week, can also help to prevent vaginal shrinkage.

Dry mouth is most commonly caused by radiation therapy given to the head and neck region of the body. During radiation therapy, saliva production is actually increased due to irritation caused by the radiation or the chemotherapy (if administered). Patients receiving radiation to the head and neck may experience a change in the production and quality of saliva in the major and minor salivary glands. During treatment the saliva tends to be thicker, often described by patients as "ropey" and difficult to mobilize. After treatment, the excessive saliva dissipates and the mouth becomes dry. This can be a temporary side effect, resolving completely or partially over the year after treatment, or result in a permanent loss of saliva production.

Dry mouth may affect speech, taste sensation, ability to swallow, and the use of dentures. Patients may complain of a sore or burning sensation, cracked lips, and fissures in the corners of the lips. There is also an increased risk of cavities, periodontal disease and ultimately, tooth loss due to less saliva. Normal saliva contains enzymes that protect the teeth and gums from bacteria, keeping them healthy.

Can Dry Mouth Be Prevented?

There are medications and techniques aimed at preventing or reducing xerostomia.

IMRT (intensity modulated radiation therapy)may reduce the extent and permanence of xerostomia. With IMRT, the salivary gland on the side opposite of the cancer receives a lower dose of radiation; therefore salivary function may recover after 6 to 12 months following the completion of treatment. This is dependent upon the dose as well as the percentage of the salivary gland that receives radiation therapy.

Amifostine, a radiation protector of normal tissues, has been shown to protect the salivary glands when given daily with radiation therapy, although logistics and side effects have limited its use in practice. Furthermore, it is not clear what benefit Amifostine adds when modern radiation techniques such as IMRT are utilized since treatment with Intensity Modulated Radiation Therapy (IMRT) or Proton therapy may allow the radiation oncologist to spare the salivary glands from getting significant radiation dose. This may prevent dry mouth in the future. There is also some concern that Amofostine may be a radioprotectant. Meaning it may protect the tissues in the treatment area from the radiation, meaning the cancer cells would not receive the treatment.

If you are getting radiation therapy to the head and neck region, you should discuss these options with your radiation oncologist.

What Can I Do If I have Dry Mouth?

If you have developed xerostomia, there are management strategies that can effectively deal with your dry mouth and prevent cavities and periodontal disease. Try to follow these simple guidelines:

• Perform oral hygiene at least four times per day (after each meal and before bedtime).
• Floss once a day
• The mouth (oral cavity) should be rinsed immediately after meals.
• Dentures need to be brushed and rinsed after meals.
• Only use toothpaste with fluoride when brushing.
• Keep water handy to keep the mouth moist at all times. Sip water or spray it in the mouth regularly.
• Apply prescription strength fluoride gel at bedtime unless you do not have any teeth.
• Rinse with salt and baking soda solution 4-6 times a day (½ tsp. salt, ½ tsp. baking soda, and 8 oz of water).
• Chew sugar free gum/suck on sugar free hard candy or drink diet ginger ale to stimulate saliva production.
• Avoid liquids and foods with high sugar content.
• Limit coffee, tea and alcohol as these will make dry mouth worse. Caffeine products such as coffee, tea and colas also act as diuretics.
• Avoid dry foods, such as bread, dry meat, toast, crackers, and snack foods that are dry and salty.
• Add sauces or gravies to food to make them more moist.
• Avoid rinses containing alcohol.
• Avoid antihistamines, which can dry the area further.
• Use moisturizer regularly on the lips
• Salivary substitutes or artificial saliva preparations may relieve discomfort by temporarily wetting the mouth and replacing some of the constituents of saliva.
• Oral pilocarpine (Salagen) is the only drug approved by the FDA to stimulate saliva secretion from the remaining salivary glands. It is not a drug for everyone with dry mouth, and it can only be obtained with a prescription from your doctor.
• Biotene® products (mouthwash, toothpaste, chewing gum that has the pH of saliva) are available without a prescription and can be effective for treating dry mouth.
• Use a cool mist room humidifier at night in the bedroom to provide humidity, especially in winter months when the house is heated.
• See your dentist every 3 months for cleaning and a dental health check up.
• Acupuncture may increase saliva production for people that have some saliva

What types of bandages are used to treat lymphedema?

The bandages used during Complete Decongestive Therapy are called "short-stretch" bandages. They are made of 100% cotton. They look like "ACE™" bandages, but they are different. ACE™ bandages are made of elastic and cotton, while lymphedema bandages are 100% cotton.

Can I use ACE™ bandages for my lymphedema?

No – you should not use ACE™ bandages to treat lymphedema. The elastic in the ACE™ bandages will create a tourniquet effect on your limb, which may make your lymphedema worse.

Where can I get lymphedema bandages?

Your therapist should help you decide which bandages you need to order. There are many companies on the web who sell lymphedema products.

If I have swelling, can I purchase a garment?

If you have swelling, it is best to have a doctor, nurse or therapist examine you to determine whether you have lymphedema. If you have lymphedema, you should be seen by a Lymphedema Therapist to determine the best type of compression for you. Purchasing a garment without the help of a professional may lead to improper fitting and may potentially make your lymphedema worse.

Elastic garments are very uncomfortable if worn on a swollen limb, but very comfortable and prevent new swelling when worn after a limb has been treated and reduced in size.

When should I wear my garment?

You should wear your garment throughout the day. Put it on first thing on the morning, and remove in the evening as directed by your therapist.

Can I sleep with my garments?

Compression garments are NOT worn for sleeping at night. They can cause a tourniquet effect in bed and cause more swelling or limit blood flow. Compression garments are replaced by bandaging or specially made nighttime garments for sleeping.

When do I need to replace my garments?

Your compression garment MUST be replaced every 4-6 months. If have been measured by a professional and have no changes in swelling, you can order them directly from the manufacturer. If your body part has changed size, you will need to be remeasured for a new garment. Also, if this was your first garment, you should definitely be measured before ordering a new one.

How do I care for my garments?

Garments must be washed AT LEAST every other day. Sweating can cause rapid breakdown of the garment leading to a costly replacement if not washed often. Washing instructions are included with each garment. In general, hand OR machine wash with a mild detergent in warm water, then roll in a towel to squeeze out excess moisture (do not wring) and HANG TO DRY.

Use a mild liquid detergent like Ivory or Dreft (not detergents formulated to wash woolens). Some manufacturers make their own washing solutions as well. Garments dry better when hung in an airy location. Also, do not hang outside; sunlight may cause premature loss of garment stretch

What is the best way to put my garments on?

Household latex rubber gloves should be used to correctly and safely don your garment. The gloves protect the garments from pulls and snags caused by jewelry and fingernails. Gloves also allow you to 'smooth' or 'massage' the garment into place without excessive stretching or 'pinching and pulling'. Put the garment on in stages as you have been taught, small sections at a time.

To achieve a proper fit, align the fabric and seams so the lines run vertically and straight. DO NOT fold the garment over or let it roll. It is a common mistake to overstretch the garment when putting it on. If the garment is bunching up, use the gloves to spread the fabric down.

Can I use a moisturizer before putting my garment on?

Use skin moisturizer just prior to bandaging or after bathing and allow to absorb well. Do not use right before putting on your garment. Fabrics are less tolerant of all lotions and ointments. Use only a light dusting of cornstarch if needed to help the garment go on. Ointments with a petroleum base are not recommended as they can damage some elastic garments.

If you have trouble slipping your garment on despite a slight amount of cornstarch, there are other options. One simple option is a silicone 'fitting' solution called Alps, which is made by the Juzo Company. It is available via the Internet (just Google "ALPS") or from some dealers of medical equipment. Other options can be discussed with your therapist.

Next Article: Insurance and Lymphedema Treatment »

Treatment for lymphedema will require ongoing care from a physician and a physical or occupational therapist (PT/OT). You will need to purchase supplies to control your swelling. This page should provide you with information to use when speaking to your insurance company. Every insurance carrier and plan is different – you should find out the specifics of your plan before beginning treatment. Lymphedema is a chronic disease. If left untreated or under-treated, it can lead to infection, disability, disfigurement or death.

Your Treatment Team

Physicians and Nurse Practitioners

Care of your lymphedema should begin with a physician or nurse practitioner visit. Typically a physiatrist (physical medicine and rehabilitation doctor), primary care physician or oncologist will diagnose your lymphedema. You should form a relationship with a health professional who understands lymphedema and can follow your care long term. Check with your insurance to make sure they cover physician visits. You will likely need to pay your co-pay or co-insurance for doctor visits.

Physical and Occupational Therapists

A physical or occupational therapist (PT/OT) who specializes in lymphedema will provide treatment for your lymphedema. Initial treatment consists of Complete Decongestive Therapy [add link to CDT page]. Check with your insurance company about your benefits for PT/OT services. Most, but not all, plans cover PT/OT. Typically the specialist co-pay will apply to PT/OT visits. If you have a plan that requires referral to a specific location, check to see if the therapists at that facility have training to treat lymphedema. If not, talk to your doctor and insurance company about going to a different facility. Lymphedema is often considered a "out-of-capitation" service and you will be allowed to attend any facility with the assistance of your PCP to obtain an 'out-of-network referral' from your insurance company. Medicare covers OT/PT visits, but there is a monetary cap to outpatient services.

Equipment Needed for Treatment

Treatment for lymphedema includes use of compression. There are three types of compression. (Learn more about garments and compression). Medicare does not currently pay for any type of compression listed below.

Bandages: Initial and ongoing treatment involves the use of short-stretch bandages. Your therapist will give you specific information on how many bandages, which sizes and where you can order them. Insurance coverage for these bandages varies.

Compression garments: These garments are worn during the day to control swelling after it is reduced by treatment. Your therapist will help you determine when you are ready for compression garments and what size you will need. Some people can purchase an "off-the shelf" garment in a pre-set size, some need to have custom garments made. You should purchase two garments – so that one can be laundered. Garments need to be replaced every six months. Insurance coverage for garments varies.

Night-time bandage alternatives: You will need to wear compression at night. You cannot wear your daytime compression garments at night as they will have a tourniquet effect. You can either bandage (using the short-stretch bandages listed above) or purchase a night-time bandage alternative. Your therapist will help you determine the compression that is right for you. Insurance coverage for bandage alternatives varies.

Discussing Your Needs with Your Insurance Company

Your insurance company considers bandages and compression garments a type of "durable medical equipment" or "DME". Speak to the DME department when discussing your case. For each of the types of compression listed above, you can obtain a letter of medical necessity from your healthcare provider. Use this letter to petition your insurance company to pay for your compression. If payment is denied, you can send an appeal letter like the sample offered by the National Lymphedema Network.

Congress Addressing Lymphedema Coverage Issues

There is a movement to change the way insurance companies pay for lymphedema treatment. The Lymphedema Treatment Act is a bill sponsored by Congressman Larry Kissell of North Carolina. The bill mandates coverage for Medicare beneficiaries with lymphedema from any cause. Most other insurance companies would follow along with these Medicare guidelines. Check the website for specific information about this bill.

What if Insurance Will Not Pay?

If your insurance company will not pay for your compression bandages or garments, here is a list of some possible sources to obtain funds for the supplies your therapist has explained that you will need:

If you have been treated for Cancer:

• CancerCare
  1-800-813-HOPE
  www.cancercare.org
  Funding for breast cancer patients only
  
  
• Living Beyond Breast Cancer
  610-645-4567
  www.lbbc.org
  Funding for breast cancer patients only
  
  
• The National Lymphedema Network
  • Marilyn Westbrook Garment Fund
    
    • Patient must be a member of the National Lymphedema Network.
      Individual membership costs $50.00
      
    • Patient must be receiving treatment at an NLN affiliated clinic or with an NLN affiliated therapist.
      
    • http://www.lymphnet.org/westbrookApplication.htm?search_term=garment+fund
      
• Breathing Room
  267-282-5844- must live within 20 mile radius of Jenkintown, Pennsylvania
  https://breathingroomfoundation.org/Home_Page.php
  MD, social worker, or healthcare professional nominates patient
  
  
• Contact the ACS for help in finding local resources.
  www.cancer.org
  800-ACS-2345
  
  
• Your Workman's Compensation Carrier
  
  
• Many churches and Synagogues have Funds for Members in Need
  
  
• Your family might be thrilled to know that there is something you truly need that they could help you as a gift for a special occasion/ holiday.
  

Keep Communication Lines Open

Given the attention being paid to the out of pocket costs facing people with lymphedema, advocacy groups hope to see changes in the future. Contact your insurance carrier periodically to see if coverage has changed. Visit the NLN website for help in appealing insurance denials or updates on legislative efforts.

Is it safe to exercise with lymphedema? Won't I swell more if I exercise?

Yes, exercise is safe with lymphedema as long as you pay attention to a few basic principles. If you have lymphedema you should exercise wearing your compression bandages or your compression garments.

Will exercise make my lymphedema worse?

No. Research has shown us that in women with breast cancer related lymphedema, exercise is safe. In fact, women who participated in a supervised, slowly progressive weight lifting program had a 50% reduction in the likelihood of lymphedema flares during the time of the study. 1

The research to find out how exercise effects lower extremity lymphedema has not yet been done. This is an area where researchers will be looking in the future. However, our best evidence shows us that exercise will not make lymphedema worse.

Why should I wear compression when I exercise?

The compression garments, or bandages, increase the efficiency of the muscle pumps in moving the fluid from your limb(s), trunk, or face. Without the compression the increased circulation and increased production of lymph fluid will collect in the areas that are lymphedematous, or swollen.

How do I begin to exercise?

First, get clearance from your physician that it is okay to begin exercising.

Then begin slowly with no weight, doing active range of motion exercises.

Your exercise should be:

Low intensity Pain free Within the guidelines for the surgical procedures you may have had Done while wearing compression bandages or garments Enjoyable!

What kind of exercises should I do?

Your exercise program should include the following:

• Stretching – to increase the range of motion at joints that are tight
• Strengthening – to improve muscle performance and strength
• Endurance – to improve the efficiency of the heart, lungs, and muscles.

How can I start my own exercise program?

Set parameters for exercise:

Intensity – target heart rate for aerobic, endurance exercise. Time of day – set a time of day that works best for you. Try to be consistent with the time so that it becomes part of your daily routine

Vary your exercise routine, for example:

Strength and flexibility training every other day Aerobic exercise on the days you don't do strength and flexibility Find someone to exercise with you – it's more enjoyable that way Incorporate deep breathing and posture into your exercise

What are some examples of aerobic exercise?

Aerobic exercise is any exercise that you do for a continuous period of time at your target heart rate with the goal of attaining 25 – 30 minutes of exercise. Start slowly and gradually build up the amount of time you are exercising until you reach 25 – 30 minutes. You should be able to complete the exercise without being short of breath, overly fatigued, or sore.

Continuous walking or walking on a treadmill Riding a bicycle or a stationary bicycle Jogging Swimming or walking laps in the pool with water above waist height Going up and down a flight of stairs Exercising on a stepper or an elliptical machine

Target Heart Rates for Exercise:

What should I expect to feel once I start exercising?

You will likely experience some muscle soreness at first that will resolve after a few days as your body gets used to the new activity. Pay attention to what your body is telling you and do not push yourself to the point of over fatigue. Your health care provider can help you start an exercise program that is appropriate for your level of conditioning. The important thing to remember is that you need to start out with low levels of exercise and gradually increase the intensity and length of time of your exercise as you get stronger and more conditioned.

If you notice increased, persistent swelling after exercise, you may have done too much. Remember, you need to start with small amounts and build gradually.

Do you need more information or help starting an exercise program?

Some people prefer to start an exercise program under the guidance of a physical therapist or exercise professional. If you have any concerns about starting an exercise program on your own, talk to your doctor about a referral to a physical therapist or work with a qualified exercise professional.

Are there special therapists or exercise professionals who work with people with lymphedema?

Physical Therapists with specialized training as Certified Lymphedema Therapists are the best people to work with you. Some facilities have specific programs designed to address the needs of people with lymphedema. Good Shepherd Penn Partners has a Strength After Breast Cancer Program to help people start a strength training exercise program.

Have fun! Enjoy your new level of activity! Notice your new level of energy!

References

Schmitz K.H., Troxel A.B., Cheville A., Grant L.L., Bryan C.J., Gross C., Lytle L.A., Ahmed R.L. Physical Activity and Lymphedema (The PAL Trial): Assessing the safety of progressive strength training in breast cancer survivors. Contemporary Clinical Trials, 30(3):233-45, 2009

Next Article: Lymphedema and Travel »

If you have had any surgical procedure that has affected your lymph nodes, travel-related activities may be of concern. During travel there can be many physical stresses that may affect a body part that is at risk for developing lymphedema. The demand on the lymph system may cause extra swelling for long periods of time, perhaps permanently.

Travel stresses can include rushing to catch your plane/train or ride; being jostled in a crowd; lifting, pulling or pushing baggage; changes in climate and atmospheric pressure; and multiple risks for infection. It is recommended that you take the following steps to limit negative effects that these stressors can have.

Recommendations

Avoid trauma to the body part:

• Be careful not to bump your arm or leg that is at risk for developing lymphedema
• Use light suitcases with wheels and avoid lifting cartons or luggage that is heavier than that which you lift day to day
• Hire a porter or get help loading and unloading
• Use your unaffected arm to pull suitcases or carry hand luggage
• Wear comfortable/loose clothing

Limit the effect of prolonged lack of movement:

• Get up and move around frequently
• Perform exercise – (breathing exercise, shoulder rolls, elbow flexion and extension, wrist rotated, ball squeezes, marching, knee bends, toe and heel raises, ankle rotation, self- MLD) during travel.

Avoid Risk of Infection:

• Carry a back-up prescription for antibiotics
• Use SPF 20+ sunblock – remember you can get sunburn through a compression garment because of synthetic fabric
• Use insect repellent and antifungal powder between toes and in skin folds
• Any vaccinations that are required should be received in the unaffected arm
• Wear foot covering, especially on the beach

Limit the effect of atmospheric pressure changes using compression:

• For those at risk for developing lymphedema, it is recommended that you take the above precautions and discuss further concerns with your therapist or physician
• For those with episodic swelling, it is recommended that you wear a compression sleeve or stocking when taking any airplane flights or increasing altitude above 8000 feet. Speak with your therapist regarding specific recommendations
• For those with chronic lymphedema, it is recommended that you apply compression bandaging for all air travel. Bandages should be applied before air travel and should remain on for 1-2 hours after reaching your destination. If this is not possible, it is acceptable to wear a compression sleeve or stocking fit by a certified fitter. A trained therapist or certified fitter at a surgical supply or durable medical equipment provider can fit you with an appropriate garment. It is important that the compression not be too high; contact a trained professional to fit you with an appropriate compression sleeve or stocking.
• Use a compression garment that is in good condition- if you wear a garment you MUST use a gauntlet or glove as well. Wearing just a sleeve may cause hand swelling.
• Carry an old (back-up) garment.

Modified from Position Statement of the National Lymphedema Network on Air Travel, 2008.

Next Article: FAQs About Lymphedema Garments and Bandaging »

Following some treatments for cancer, there is a risk of developing lymphedema. Lymphedema is an uncomfortable swelling that occurs in the area where you had cancer treatment. This is called the "at risk area" and can include:

• Breast cancer at risk areas include the breast, underarm, arm and hand on the side of surgery and/or radiation.
• At risk areas for head and neck cancers are the face, chin and neck.
• At risk areas after treatment to the abdomen or pelvis (such as in gynecologic cancers) are the abdomen, buttocks, genitals, legs and feet.
• In melanoma, the at risk areas after groin lymph node dissection are the abdomen, buttocks, genitals, and leg and foot on the side of surgery. If lymph nodes were removed from the underarm (axillary) area, the risk is to the chest wall, arm and hand on the side of surgery.

Lymphedema occurs because of an impaired lymphatic system. There is no research that demonstrates that lymphedema can be prevented, but the risk of developing lymphedema can be reduced or moderated by understanding how to reduce the demand you place on the lymphatic system in your arm.

We do know from research that there are a number of factors that increase the risk that you MAY develop lymphedema. They include:

• Amount or extent of surgery or lymph node dissection
• Amount of Radiation to the lymph nodes
• Advanced Stage Cancer
• Infection or injury to the body part
• Being overweight or obese

What are the Signs/Symptoms of Lymphedema?

• Aching Pain or Heaviness
• Swelling
• Numbness
• Tightness
• Stiffness
• Tight jewelry

What are the signs/ Symptoms of Infection?

• Sudden increase of swelling
• Change or increased intensity of pain
• Redness
• Increased temperature of the affected area/ warm to touch
• Flu-like symptoms of fever and achiness

**If you are experiencing signs of infection, contact your physician or report to your closest Emergency Department within 12 hours of these symptoms. DO NOT WAIT!

Common Sense Rules to Reduce Your Risk

Take good care of your skin to reduce the risk of infection and injury by following these tips:

• Keep your skin clean and moisturized.
• For arms and hands at risk: wear gloves when you wash dishes or garden or when you use harsh chemicals for cleaning
• For legs and feet at risk, wear shoes and socks at all times to prevent injury
• Use an electric razor for your armpit, face or legs (if you need to!)
• Avoid injection or blood drawing in the at risk area
• Avoid manicures/pedicures (based on your at risk area) or at least avoid cutting your cuticles and bring your own tools so that they have not been used for another person
• If your leg and foot are at risk, you may want to consider having your toenails cut by a podiatrist.
• Clean cuts/bites well with soap and water and use an antibiotic cream to encourage early healing. Observe for signs of infection and report immediately if they occur.
• Avoid overheating the at risk area in a hot tub or sauna
• Use a high SPF sunscreen or Insect repellant when appropriate

Avoid constricting your blood flow, which can result in a 'backup' of fluid in the at risk area

• Avoid blood pressure readings in the at risk arm (if applicable)
• Avoid tight jewelry or clothing on the at risk limb
• After treatments affecting the underarm (axillary) lymph nodes, women should wear a well fitted bra without underwires and, if applicable, use a lightweight prosthesis (a heavy prosthesis can put too much pressure on the lymph nodes above the collarbone)
• Avoid carrying a heavy shoulder bag or suitcase for long periods with an at risk arm. Rolling suitcases or luggage racks help!

Maintain your Ideal Weight

Obesity is a known risk factor for lymphedema. A balanced healthy diet with emphasis on portion control is recommended. Exercise is another excellent way to help maintain your weight.

Exercise with Care

Having cancer and receiving treatment for it will change your body. Exercise is one of the best ways that you can maintain strength, energy, mobility and cope with cancer related fatigue. Refer to the About Exercise During and After Cancer Treatment article for more information on exercise.

Next Article: Treatment for Lymphedema: Complete Decongestive Therapy (CDT) »

There are some things that you can do to help yourself. Lymphedema is swelling that sometimes occurs after cancer treatment. The swelling may occur in the chest wall, abdomen, arm, leg, foot or hand on the side or in the area that lymph nodes were removed. Surgery and radiation treatment increase your risk for lymphedema.

Monitoring for Infection

Infection is a serious concern for people with lymphedema. Signs that you may have an infection include:

• Sudden worsening in swelling
• Increased pain
• Redness
• Affected limb feels warm or hot
• Fever

If you develop any signs of infection, contact your physician or go to the nearest emergency room within 12 hours of these symptoms. Infection is a very serious concern. Do not wait to see if it improves!

What Can I Do to Prevent Problems?

Take Good Care of Your Skin

• Keep your skin clean and moisturized with a lanolin-based lotion. (For example: Eucerin)
• Wear protective gloves when you wash dishes or work in the garden.
• Wear protective gloves when you use chemicals for cleaning.
• Wear long oven mitts while handling hot pots and pans, especially while using the oven.
• If you need to remove hair under your arm, avoid cutting, or irritating your skin.
• Have injections or blood drawn from your other arm.
• Manicures or cutting your cuticles can cause an opening in your skin, and lead to an infection in the arm on the side of your surgery. Manicure tools from nail salons can introduce bacteria into your body.
• Clean cuts and bites well with soap and water. Use an antibiotic cream on the opened area to kill any germs, and cover the area with a non latex bandage.
  • It is a good idea to carry these items and antiseptic wipes in your purse, just in case you get a cut while away from home.
• Hot tubs or saunas can cause your arm to swell due to sudden increases in your lymph circulation; it is a good idea to avoid them.
• Use at least an SPF -25 sunscreen on your involved arm when you are outside or in the car. Reapply as needed throughout the day.
• Use an insect repellant when you are at risk for bug bites. Bug bites can lead to infection in the arm on the side of surgery.

Do Not Constrict Your Arm / Leg

• This can cause a "back up" of fluid in your arm.
• Have your blood pressure taken in the other arm
• Tight jewelry or clothing could cause your involved arm/leg to swell
• If you had breast cancer, be sure that you wear a well fitting supportive bra. It is a good idea to have a certified bra fitter provide you with a bra after breast cancer surgery.
  • If you wear a prosthesis, be sure that it is light weight and comfortable.
• It's a good idea to use a rolling suitcase for travel or carrying heavy/large items. Avoid carrying heavy shoulder bags or suitcases. If you must carry a bag, use your other arm.

Maintain Your Ideal Weight

• Being overweight increases your chances of swelling.
• Eat a healthy diet with lots of fruits and vegetables. Avoid foods containing excessive sodium.
• Measure your food and write down what you eat. A registered dietitian can help you manage your diet.
• Regular exercise helps to control your weight.

A Note About Exercise and Lifting Heavy Objects

Those at risk for lymphedema can and should exercise. Start with low intensity exercise and gradually increase intensity while monitoring for changes in your limb, including swelling or redness. If any swelling or redness occurs, stop the exercise and consult your physician. Any person at risk for lymphedema should consider wearing a compression garment with vigorous or very strenuous exercise.

Survivors were traditionally told to not lift anything heavier than 10 or 15 pounds. Research has found that women with lymphedema after breast cancer who lifted weights were stronger and experienced fewer flare-ups of their lymphedema than those who did not work out. Weight lifting should be done under the guidance of an experienced trainer and slowly progress from low levels of weight or resistance and increase after establishing that there is no worsening of lymphedema symptoms. This is important, as there will be a very small group of patients who do develop worsening symptoms. It is also important to note that these studies have not yet shown benefit for lower extremity edema.

Lymphedema occurs as a result of damage to the lymph nodes or lymph vessels.

The lymph vessels run very close to the blood vessels in our bodies and move fluid from the body through the lymph nodes and then into the blood. Lymph nodes work as filters to fight infection and help regulate swelling.

Lymphedema is chronic swelling that happens when the lymph is not moving properly. This can happen when lymph nodes are removed due to cancer. Lymph nodes can also be removed in other non-cancer surgeries. Lymph nodes and vessels can also be damaged with radiation therapy for cancer or through an injury to a body part.

Some people are born with poorly working lymph systems.

Some people have damaged leg veins or a history of blood clots. These people can also develop lymphedema due to back up of blood and fluid in the small vessels of the body.

Lymphedema results in chronic swelling that leads to tissue inflammation and scarring. The swollen body part feels harder to touch and is heavier than the non-swollen side.

How Is Lymphedema Treated?

The best treatment for lymphedema is complete decongestive therapy (CDT).

What is Complete Decongestive Therapy (CDT)?

Complete decongestive therapy (CDT) has 4 parts:

1. Manual Lymphatic Drainage (MLD)
   A light skin stretching technique that stimulates the lymphatic system
2. Compression
   Layered bandaging with foam or specially fitted garments that support the swollen area to control swelling.
3. Exercises
   With compression, special exercises will help to pump lymph out of the swollen area.
4. Skin Care
   Keeping the skin clean and moisturized will help to prevent infections that often can happen with lymphedema.

How Long Does Treatment Last?

There are two phases of treatment:

Active Phase

• Lasts 2 to 12 weeks depending on the amount of swelling and tissue firmness.
• Complete decongestive therapy for one-hour sessions, 4 to 5 days per week.
• Bandages with foam are worn 23 hours per day.

Maintenance Phase

• In order to prevent the area from swelling constant attention is needed.
• Elastic compression garments that fit like a second skin are worn during the day.
• Often bandages with foam are worn at night to decrease daily daytime swelling.
• Exercises are done while wearing compression.
• Self manual lymphatic drainage is done for 20 minutes per day.

How Can I Begin Complete Decongestive Therapy?

• Complete decongestive therapy can begin once you have a written prescription from your doctor. The prescription is good for 30 days after it is written.
• It is important to see a physical or occupational therapist that has passed a special training course to treat lymphedema. You will see the initials CLT, certified lymphedema therapist behind their name. Therapists who have passed a national certification test have CLT-LANA behind their name.
• How do I find a certified therapist? If you need to find a qualified lymphedema therapist in your area, you can consult the websites below. These schools train qualified certified lymphedema therapists (CLT). Lymphedema therapists with CLT-LANA following their name have passed a national standardized examination.
• Klose Training www.klosetraining.com
• Norton School www.nortonschool.com
• Vodder School www.vodderschool.com
• Use the NLN "find treatment" feature

Next Article: Lymphedema and Exercise FAQs »

People who have received or are actively receiving certain cancer therapies are at an increased risk for developing osteoporosis. Osteoporosis and osteopenia (the precursor to osteoporosis) are medical terms for decreases in bone density, or a "thinning" of the bones, which increases the risk of fracture (breakage) of the affected bones. The disease most often affects the hips, spine and wrists, and is responsible for 2 million fractures a year in the U.S. Cancer survivors at risk for osteoporosis should take steps to prevent the disease and have appropriate screening.

Our bones provide support and structure for our body, as well as storage for essential nutrients. Your bones are continually being damaged and repaired by a complex system involving osteoclasts, which are cells that break down old bone, and osteoblasts, which are cells that form new bone. The body maintains a delicate balance between the breakdown of old or damaged bone and the formation of new bone, also known as bone remodeling, to maintain bone strength. Estrogen, parathyroid hormone and testosterone play critical roles in regulating bone remodeling. In osteoporosis, more bone is being destroyed than is being formed, leading to weakened bones.

Who is at risk?

• Women who have premature (early) menopause or decreased estrogen production due to cancer therapy (i.e. women taking hormonal therapy, such as aromatase inhibitors or leuprolide; or menopause induced by surgery, chemotherapy or radiation). Of note, tamoxifen increases the risk of osteoporosis in premenopausal women, but can actually increase bone density in menopausal women, thereby decreasing the chance of osteoporosis.
• Men who have decreased testosterone production. This is a factor for men treated with androgen deprivation therapy (ADT) such as leuprolide or orchiectomy (surgery to remove testicles).
• Treatment with ifosfamide, methotrexate, radiation to the brain or weight bearing bones (spine, hips, legs) or allogeneic stem cell or bone marrow transplant.
• Survivors of childhood cancers.
• Long-term use of corticosteroids (dexamethasone and prednisone, greater than 5mg per day for 2 months or more).
• Patients who have had their stomach surgically removed (gastrectomy).

There are additional risk factors that are not specific to having cancer, such as smoking, consuming excessive alcohol, leading an inactive lifestyle, being petite and thin, having a diet low in calcium and vitamin D, and missing menstrual periods. Osteoporosis is more common in women (80% women, 20% men), those with a family history, Caucasians and those of Asian or Latino descent, although all races have some risk. You can learn more about other risk factors by visiting the National Osteoporosis Foundation.

How is osteoporosis detected?

Screening for osteoporosis is done with a bone mineral density (BMD) test, of which a DEXA scan is the most commonly used. For the general public, screening is recommended to begin for women at age 65 (then every 2 years thereafter) and, for men, a baseline at age 70. Experts recommend screening for all female postmenopausal cancer survivors who have one or more risk factors (regardless of age), and to repeat the test every year. Men who are undergoing ADT or orchiectomy should have a baseline screening, with further testing depending on their results and risk factors. Cancer survivors should discuss their specific risk and need for screening with their healthcare team. Risk can be evaluated using the FRAX® tool, which was developed by the World Health Organization to evaluate the risk of fracture in people.

What can I do to protect my bone health?

While you may not be able to change your family and health history, there are some steps you can take to protect your bones.

• Do not smoke or drink excessive alcohol (no more than 2 drinks per day).
• Watch your caffeine intake- studies have shown large amounts of caffeine increase the risk of fractures (broken bones). Drink milk instead!
• Get your weight-bearing exercise or resistance training! This strengthens bones and muscles. Examples of weight-bearing exercise include aerobics, dancing, jogging and walking – anything that requires you to be upright and supporting your weight. Resistance training includes lifting weights, using exercise bands and Pilates.
• Have appropriate bone health screening.
• Get 1200-1500mg of calcium and 400-800 international units (iu) of Vitamin D per day (800-1000iu in women over 50). This can be through supplements and/or in your diet, although most people have trouble meeting these requirements through diet alone.

Dietary Tips

Calcium

Our bodies cannot produce calcium, so we must be sure to get enough in our diet to support healthy bones. On the nutritional label of a food that contains calcium, you will see "calcium" followed by a percentage, which is the percentage of the recommended daily amount (RDA) (1000 mg). A label reading 20% calcium means the product has 200mg of calcium per serving (multiply the percentage by 10 to get the mg of calcium per serving). For example, a typical 8 oz. glass of milk has 30% of the RDA, or 300mg. Although the daily value is set at 1000 mg, you should still aim for the recommended 1200 – 1500 mg as noted above.

Dairy foods, such as milk, yogurt and cheese, are highest in calcium. Dark, green vegetables, such as broccoli, kale and collard greens, contain calcium as well. Some foods are fortified with calcium, but read the labels to get an idea just how much they contain. Calcium fortified orange juice is one good source. Spinach and rhubarb contain calcium, but also contains large amounts of oxalate and phytate, which prevent the body from absorbing their calcium. However, they do not interfere with the absorption of calcium from other foods. Other good sources of calcium include almonds, sunflower seeds, apricots and figs.

Calcium supplements are an easy way to get the recommended daily amount and come in 2 forms: calcium carbonate and calcium citrate. The body does have some trouble absorbing large amounts of calcium, so supplements should be split into 2 or more doses per day. Calcium carbonate requires stomach acid to be absorbed by the body, therefore people that take acid reducers (such as Zantac, Tagamet) and/or proton pump inhibitors (such as Prilosec, Prevacid, etc) should use calcium citrate. If you have trouble tolerating your calcium supplement, talk to your doctor or nurse; there may be another formulation you can tolerate more easily.

Vitamin D

Vitamin D is often called the "sunshine vitamin" because our skin converts ultraviolet rays from the sun into vitamin D. In general, 10-15 minutes of sun exposure on the hands, arms and face creates the needed amount. However, it is difficult to measure how much vitamin D you are getting by this method and the amount can vary by season or location. Very few foods contain vitamin D naturally; these include certain fish (salmon, tuna) and fish liver oils, while egg yolks and beef liver contain small amounts. Many foods are fortified with vitamin D, once again, read the nutrition labels to know how much! You may notice that vitamin D is available in two forms, D2 and D3. Supplements typically contain D3. Research has found that both are beneficial for bone health. A cup of fortified milk contains about 100 international units (iu) of vitamin D. A multivitamin contains 400iu and some calcium supplements also include vitamin D. You should aim for 400-800iu per day (800-1000iu for women over 50). Talk to your doctor or nurse about whether or not you should have your Vitamin D blood levels checked.

Medical Therapy

If your healthcare team determines that you have osteoporosis or osteopenia, they may recommend medications to prevent it from getting worse. The main category of medication used to treat osteoporosis is called antiresorptive medications, which work by slowing the rate of bone breakdown. While breakdown is slowed, the formation of bone occurs at the same speed, which may allow bone density to improve. Antiresorptive medications include bisphosphonates (such as alendronate, zoledronic acid, etc.), raloxifene (a selective estrogen receptor modifier or SERM) and calcitonin. PTH (teriparatide) is a type of parathyroid hormone, which increases the rate of bone formation, allowing bones to strengthen, but is much less commonly used because of significant side effects. If you are taking a bisphosphonate, be sure to talk to your doctor or nurse if you have major dental work planned; you may need to temporarily hold this medication.

Each of the medications has some risk of side effects and may not be appropriate for every patient. Discuss your medical options for treating osteoporosis with your healthcare team.

Resources

National Osteoporosis Foundation

International Osteoporosis Foundation

WHO FRAX® tool (for estimating the risk of developing a bone fracture)

What is Cancer-Related Fatigue?

Although healthcare professionals frequently talk about fatigue, I rarely hear a patient describe this feeling as "fatigue". Patients know it as the feeling of exhaustion, being completely worn out, unable to concentrate, feeling "heavy", and most of all, feeling more tired than they have ever felt. It is the healthcare provider who then explains that this is cancer-related fatigue.

Fatigue is one of the most common symptoms experienced by cancer patients. Studies have reported that 26 to 90% of patients experience fatigue at some time during their treatment. The reason for this large range is that the definition of fatigue has varied in these studies, as has the extent and type of tumor, and the type of treatment. In addition, fatigue is very subjective. That is, it is a personal experience, and is different for each person who experiences it. The National Comprehensive Cancer Network defines cancer-related fatigue (CRF) as "a persistent, subjective sense of tiredness related to cancer or cancer treatment that interferes with usual functioning." This sense of tiredness is usually not relieved with rest and is not related to an excessive amount of activity. Many patients describe it as feeling "bone tired". They feel physically, mentally, and emotionally drained.

As you can imagine, this exhaustion has a great impact on a person's quality of life. Unfortunately, many patients see this as "par for the course" and don't seek help from their healthcare providers. On the other hand, many healthcare providers may do little more than recommend rest, which research has found is not particularly helpful. This article will review some of the interventions shown to help manage and improve CRF.

Fatigue can fluctuate during the cancer diagnosis, with "good days" and "bad days". In general, patients who are receiving chemotherapy typically have a peak in fatigue 4-5 days after treatment, or at the time when blood counts are low (nadir). For patients receiving radiation, fatigue tends to reach a peak at the end of treatment, improving anywhere from 1-3 months following therapy. These may be the normal time frames, but many patients report fatigue persisting for many months or years after therapy, even if the cancer is in remission. Patients having undergone chemotherapy, radiation therapy, and/or bone marrow / stem cell transplants, as well as those with a terminal diagnosis, often suffer the most fatigue.

What Causes Cancer-Related Fatigue?

Researchers have found several abnormalities that are related to CRF, but it is uncertain if these changes actually cause CRF or are just associated with it. There are several medical and psychosocial conditions that can either cause fatigue or increase CRF (see table 1). If it is determined that a patient has one or more of these conditions, the condition(s) should be treated first and foremost.

Table 1

There are several other theories as to why cancer patients suffer from this fatigue. The first involves cytokines, which are proteins released by cells that act as a messenger for the immune system. These proteins regulate many functions of our immune system, including inflammation, immune function, and stimulating the production of all blood cells. Researchers have found that cancer causes an increase in the release of certain cytokines, and levels of these cytokines were found to be higher in people experiencing CRF, suggesting they could be a cause. It is also known that some cancers cause people to have higher "resting energy consumption", in other words they burn more calories at rest than someone without the disease, and thus require more energy to carry out daily activities. A decrease in the production of certain hormones has also been found in patients with CRF, which may contribute to the feeling of fatigue. These are all theories, and none has been proven to be the cause. In fact, it is likely there is not one single cause, but rather a combination of factors.

It is understood that a lack of physical activity can aggravate or cause fatigue. This may be because deconditioned muscles require a person to exert more energy and effort to perform a task. For this reason, exercise has been studied as a preventive measure and has been shown to work best when started before fatigue sets in, but exercise also can help to relieve fatigue associated with cancer and treatment.

How Can We Help Relieve or Prevent Fatigue?

Only two interventions have been proven truly effective in large clinical trials to relieve or prevent fatigue: correction of anemia and exercise. One reason it has been difficult to evaluate new therapies is due to a lack of understanding of the exact cause of CRF, as well as the lack of an animal model in which to do preliminary studies. You can't exactly ask a mouse to rate his fatigue! In addition to anemia and exercise, we will discuss some other ways to manage fatigue that have been shown to be helpful.

Anemia

Anemia is defined as a hemoglobin level below 12 g/dl, and symptoms include: shortness of breath or difficulty breathing with exertion, and fatigue. Anemia in a cancer patient can have many causes including: bleeding, bone marrow involvement of disease, chemotherapy, radiation therapy, organ dysfunction (heart, lung, liver or kidney disease), or nutritional deficiencies. Anemia is believed to be one factor contributing to fatigue, and its correction has alleviated fatigue in clinical trials. One way to correct anemia is through the use of blood transfusions; in some cases, this may be the best method, particularly if the patient is bleeding or having symptoms. Despite many safe guards, blood transfusions are not without risk and can lead to transmission of viruses, allergic reactions, and lung injury.

In the case of anemia that develops over the course of cancer therapy, anemia can often be corrected by stimulating the bone marrow to make more red blood cells. In our bodies, a decrease in the red blood count or hemoglobin causes the kidneys to release a protein called erythropoietin, which in turn stimulates the bone marrow to make more red blood cells. Synthetic or man-made versions of erythropoietin can also stimulate the same response. These are sometimes called growth factors, and include darbepoetin alpha (Aranesp®) and epoetin alpha (Procrit®) (other types are available in countries other than the U.S.). There are studies that have shown these growth factors are not beneficial to all cancer patients. They may increase the risk of blood clots, hypertension(high blood pressure), tumor growth, and even cause death. Therefore, your doctor will have to decide if growth factors are appropriate to treat your anemia.

In most studies, correction of anemia resulted in decreased fatigue and an increase in quality of life. It makes sense that these positive changes were greatest in patients whose tumors also responded to therapy, but studies also found that an increase in hemoglobin in those with progressive disease also resulted in improved quality of life, compared to patients with lower hemoglobin. Correction of anemia is one intervention in the treatment of fatigue, but not every cancer patient with fatigue has anemia.

Exercise

No doubt, when this intervention was first suggested, people probably thought it was ridiculous. How can you ask someone with this level of fatigue to exercise? Well, many studies have proven that exercise improves fatigue ratings and overall quality of life. People found themselves in a better mood, with more energy, feeling more rested, and better able to concentrate. Now, this does not mean running a marathon, but rather refers to light exercise, such as taking a walk, doing some simple arm exercises to lift cans of soup, marching in place, non-strenuous swimming, or pedaling on a stationary bike. Make sure your healthcare team knows of your plans and has approved the exercise. Certain exercises may not be recommended, especially for those with bone metastases, low blood counts, or other health conditions.

It is important to do something that you enjoy and start off slow then progress as you can. Most exercise study participants started before or early during the course of cancer therapy in an effort to prevent fatigue. It can be much harder to start a program once fatigue has set in, but it is not impossible. It is important to know that even if you are experiencing fatigue, even light exercise can help you feel better. Patients who are already experiencing fatigue can start with a short walk and increase the distance each day or week as you are able. It may be helpful to ask someone to walk with you as encouragement. A walk to a nice park or garden may help a person relax and take his or her mind off worries. Remember, the type of exercise is not that important; do whatever form of exercise you enjoy(that is approved by your healthcare team). The important thing is that you do some activity! You will feel much better once you get started.

Energy Conservation

Rest is commonly recommended as a way to deal with CRF, but it often does not help. One way rest can help is through energy conservation and activity planning. This is planning and saving your energy for when you want or need it most. For instance, if your son is playing in a soccer game this afternoon that you really want to go to, take it easy in the morning and conserve energy for the afternoon event. Remember that you may not have the energy to stay for an entire game, so if you want to be there until the end, go a little late.

Another way to conserve energy is to ask for help; don't be afraid to do so. I often hear from friends and family asking what they can do to help. People don't want to be in the way, but they want to be helpful, and just don't know where or when to jump in. Ask a friend to clean the house for you, prepare a meal for your family, drive the school carpool, or just sit and talk. These may seem like simple tasks, but they can be extremely helpful to someone with CRF.

Sleep problems and deprivation can add to or cause fatigue. Keep as normal a sleep schedule as possible, and talk to your doctor about options if you are unable to sleep at night. Avoid caffeine later in the day so you will be more likely to sleep at night. Avoid naps, or if not possible, limit them to 20-30 minutes and not too late in the day. See our article on insomnia for more tips.

Complementary Therapies

Mind-body interventions have been studied in the treatment of fatigue. The therapies that have shown promise include: acupuncture, healing touch, hypnosis, massage, yoga, guided imagery and relaxation. One downside to many of these therapies is the out-of-pocket expense for the patient, without a guarantee of it working. Use caution with these modalities and talk with your healthcare provider before starting them. In some areas, clinical trials studying these modalities may be available at no cost to the participant, so ask your healthcare team about it or find available trials using the OncoLink Clinical Trials Matching System.
Several fatigue management programs have demonstrated the benefits of support groups. Breast cancer patients who participated in a support group had improved mood and coping responses. Stress management was found to be helpful in studies, but interestingly, self-guided stress management was more helpful than a group-led session.

Medications

There have been studies looking at a category of medications, called psychostimulants, to relieve fatigue in patients with cancer and other diseases. These medications are meant to "stimulate" the mind and body of the patient, giving them more energy. Several small trials have found an increase in energy with the use of these medications, but they were not all tested in cancer patients. These medications include: methylphenidate (Ritalin), dexmethylphenidate (Focalin), and modafinil (Provigil). Modafinil is a medication used to treat narcolespsy. In studies with cancer patients, it was found to help those with severe fatigue, but not mild or moderate levels of fatigue. There are side effects to these medications; including loss of appetite, sleep problems, dizziness, headache and nausea. Studies continue investigating these agents. Overall, studies thus far have shown that it is best to initially treat cancer- related fatigue without medications and if non-pharmacological treatments are not helping, your healthcare team may recommend medications.

As depression and anxiety are known to contribute to fatigue, treatment with anti-depressants has been studied. This therapy was found only to be helpful in those patients suffering from true depression and not beneficial for treating fatigue in those without depression. It is normal to have a reaction of sadness to a diagnosis of cancer, but this does not always lead to depression. In fact, studies have found that only 25-30% of cancer patients meet the criteria for a diagnosis of depression.

Corticosteroids, such as dexamethasone and prednisone, have been studied and may be beneficial in the short-term for some patients. In addition to only having a short-term benefit, the side effects of long-term steroid use are a big deterrent for continuing these medications.

Clinical Trials and Specialists

Cancer-related fatigue can be the most distressing symptom for many patients, but it is not always on the top of the healthcare provider's list of problems. Nevertheless, you should not hesitate to tell your healthcare team if you are experiencing fatigue and how it is affecting your quality of life. Patients should talk with their healthcare team about treatments and interventions to help with fatigue. Inquire about clinical trials investigating fatigue. Some centers have fatigue clinics that deal with this symptom specifically. Find available trials using the OncoLink Clinical Trials Matching System.

References

Berger, A.M., Gerber, L.H., Mayer, D.K. (2012). Cancer-related fatigue: implications for breast cancer survivors. Cancer. 118(8 Suppl):2261-9. Review.

Campos, M.P., Hassan, B.J., Riechelmann, R., Del Giglio, A.(2011). Cancer-related fatigue: a practical review. Annals of Oncology. 22(6):1273-9.

Campos, M.P., Hassan, B.J., Riechelmann, R., Del Giglio, A. (2011). Cancer-related fatigue: a review. Revista da Associação Médica Brasileira. 57(2):206-214. Review.

Escalante, C.P. and Manzullo, E.F. (2009). Cancer-related fatigue: the approach and treatment.  Journal of General Internal Medicine. 24 Suppl 2:S412-6. Review.

Mitchell, S.A. (2010). Cancer-related fatigue: state of the science. PM & R: The Journal of Injury, Function, and Rehabilitation. 2(5):364-83. Review.

National Comprehensive Cancer Network, Cancer-Related Fatigue and Anemia Treatment Guidelines for Patients, Version 1.2013, March 2013.

Wanchai, A., Armer, J.M., Stewart, B.R.(2011). Nonpharmacologic supportive strategies to promote quality of life in patients experiencing cancer-related fatigue: a systematic review. Clinical Journal of Oncology Nursing. 15(2):203-14.

Wang, X.S. (2008). Pathophysiology of cancer-related fatigue. Clinical Journal of Oncology Nursing. 12(5 Suppl):11-20. Review.

More Information

Fatigue Tip Sheet: Here you will find a list of helpful tips about fatigue and cancer related anemia. You will find information that explains what fatigue is, why it happens, how it is treated, and what you can do to prevent yourself from developing it.

Fatigue Medications: Find out about medications which may be used to treat cancer related fatigue and anemia or to shorten the duration of anemia in some cancer patients receiving chemotherapy and radiation therapy.

• PROCRIT (Epoetin alfa)
• Darbepoietin Alpha (Aranesp®)

How does cancer therapy effect fertility?

In a woman of reproductive age, one of the two ovaries begins to develop 15-20 immature eggs (oocytes) within follicles (cells which support its development) every month. Only one of these oocytes is permitted to fully develop and become a mature oocyte (the rest die), at which point it is released into the fallopian tube for possible fertilization in the uterus. A woman has a limited number of oocytes in her lifetime, with the highest number being present prior to birth (about 7 million at 7 months gestation). This number then slowly decreases from approximately 2 million at birth, to menopause, when approximately only 1,000 oocytes remain and stop maturing. Over a lifetime, approximately 400-500 mature oocytes are released into the fallopian tubes. If the immature oocytes stored within the ovary are damaged by cancer treatment, fertility is at risk. Damage can be to the undeveloped oocytes or to the follicles required to develop them. In addition, a woman needs to be able to carry a pregnancy to term. Damage to the uterus or cervix can compromise this ability.

It is important to understand that chemotherapy works by killing rapidly dividing cells. Chemotherapy is able to destroy large numbers of cancer cells because they are rapidly dividing and abnormally reproducing. Many other cells in our bodies are also constantly dividing, including those lining the gastrointestinal tract, hair follicles, and germ cells (including sperm and oocytes or eggs). Because these cells also become targets, we see side effects related to their destruction, such as diarrhea, mouth sores, hair loss, and infertility, respectively.

One other piece to the puzzle is the pituitary gland, located in the brain. This gland produces special hormones (LH and FSH), which in turn stimulate the ovary to develop and release a mature female oocyte. Radiation therapy to the brain can damage the pituitary gland, ultimately affecting the ovulation cycle, which may then result in a shorter luteal phase (days after ovulation during which fertilization occurs). This can usually be fixed with supplemental hormones.

Chemotherapy and fertility

Predicting the risk of infertility to each individual is often impossible. Risk is dependent on the drug(s) used, dosage received, duration of use, and the woman's age at the time of administration. Rarely does a person receive only one chemotherapy agent, and combining various agents makes predicting fertility a greater challenge. Higher doses and longer duration of treatment cause the highest risk of infertility. Older age at time of administration leads to a higher likelihood of infertility and amenorrhea (loss of menstruation). As age increases, smaller doses of chemotherapy are needed to result in infertility.

Fertility loss is also dependent on the size of the follicle pool (or number of oocytes) prior to chemotherapy. Given that this number decreases with age, the older the woman, the higher the risk of infertility becomes, because there are fewer oocytes at the outset. Unfortunately, there is no way to know for certain how many oocytes a woman has at any point in life, although some tests can estimate this number. Age can act as a guideline, but it is not an exact science. (See assessment of ovarian function below) For example, a study of amenorrhea in breast cancer survivors who received cyclophosphamide, methotrexate, and fluorouracil (CMF) found that 35-40% of women under age 40 did not regain menses, but as many as 80-95% of those over 40 did not. This means that somewhere between 5 and 20% of women over 40 DID regain menstruation, even though they were not expected to do so.

Many studies look at the resumption of the menstrual cycle as a predictor of fertility. Although pregnancy can not occur without resumption of menses, menstruation alone is not a guarantee of fertility. Some studies have reported pregnancy rates in survivors, but it is difficult to know how many were actually attempting to conceive. One must also consider other variables, including rates of intercourse, partner fertility issues, cancer therapies received, and time since therapy. Women who do regain menses after therapy are still at risk of entering menopause earlier than women who did not have chemotherapy or radiation.

With all of this in mind, we know that the group of chemotherapy agents called alkylating agents poses the greatest risk. These include cyclophosphamide, ifosfamide, BCNU, CCNU, chlorambucil, melphalan, and busulfan. Some agents known to have a low risk of infertility are vincristine, methotrexate, and fluorouracil (5-FU). There is not enough data on newer agents, including taxanes and targeted therapies, to address fertility after these agents. Therapies used in preparation for stem cell and bone marrow transplant are likely to cause infertility in women, although studies have found that pre-pubescent girls treated for childhood cancers have a good chance of regaining ovarian function. Transplant regimens utilizing busulfan and/or cyclophosphamide are more toxic to a woman's fertility than those utilizing melphalan.

Radiation Therapy and Fertility

Damage to fertility caused by radiation therapy is dependent on the dosage received, area of the body treated, and the woman's age at time of treatment. As with chemotherapy, the size of the follicle pool before treatment is directly related to the number of oocytes remaining after therapy. Younger women are more likely to have a larger pool and therefore are less likely to enter permanent menopause at the time of therapy. A dose of only 5 or 6 Gy can cause ovarian failure in a woman over 40, but larger doses (20Gy) are required to cause failure in women under 35. In women who received 20-30 Gy of radiation to the abdomen as children, 97% experienced ovarian failure or developed menopause earlier than normal (average age at menopause was 23 years in these survivors). As a reference, 50 Gy is typically recommended for the treatment of common gynecologic cancers.

Younger women who do regain menses after radiation therapy are not out of the woods. These women are at risk of entering menopause earlier than women who did not have radiation or chemotherapy. Predicting when this menopause will occur is difficult, putting pressure on younger women who wish to pursue a natural pregnancy. As with chemotherapy, women who resume menses have no guarantee of fertility.

Total body irradiation (TBI) is a technique used for preparation for stem cell and bone marrow transplants in which the entire body is irradiated. It is estimated that 85-90% of women who undergo TBI will have permanent ovarian failure, with only 10-14% regaining menses. Pregnancy rates in women who received TBI for transplant are reportedly around 2% (although as high as 12% in aplastic anemia survivors). Girls who have received TBI prior to puberty are more likely to regain ovarian function than those who received it post-puberty.

Radiation therapy to the abdomen or pelvis can cause damage to the uterus and/or cervix, leading to difficulty carrying a pregnancy to term. Studies have found that radiation can cause changes to the musculature, blood flow, and size of the uterus. This may prevent an embryo from implanting. Other complications that occur in higher rates in women who received radiation to the uterus include: miscarriage (38% vs. 12% in the general population), preterm labor (62% vs. 9%), and low birth weight babies (62% vs. 6%). Despite these risks, the risk of malformations of the fetus are not increased, so long as radiation is not given during pregnancy.

Surgery and Fertility

Surgery that removes both ovaries or the uterus, cervix, and/or fallopian tubes will affect fertility in some way. Depending on the involvement and stage of the cancer, some women may be eligible for fertility-preserving surgeries and should discuss these options with their surgeon.

Hormone Therapy

Tamoxifen can temporarily stop or alter menstruation, but this does not happen in all women. It is possible to become pregnant while on tamoxifen, so women should use two forms of birth control to prevent this. If a woman becomes pregnant while on tamoxifen, the drug should be stopped immediately due to the risk for the fetus. In addition, tamoxifen can alter estradiol and FSH levels, making it difficult to assess ovarian function in women on the drug (see assessment of ovarian function below).

Assessment of Ovarian Function after Therapy

Many studies conducted in the oncology community use the resumption of menses as a measure of ovarian function. Fertility experts know this is not a good predictor of fertility, and although there is no foolproof predictor, there are a few tests that can help unravel the mystery. Follicle stimulating hormone (FSH) and estradiol (E 2 ) are hormone levels which can be checked by a blood test on the 3 rd day of menstruation. These levels are used to assess ovarian follicle reserve and fertility. In a menstruating woman, an FSH above 12mIU indicates severely impaired fertility, as does an E 2 level above 75pg/ml.

These levels, however, cannot predict exactly how many follicles remain or how long before infertility will develop. One hormone, anti-Mullerian hormone (AMH), is produced by early follicles and is a good predictor of the follicle reserve. Using ultrasound to count the number of antral follicles (those oocytes that are maturing) on the 3 rd day of the menstrual cycle can also be a good marker of follicle reserve. The fraction of follicles maturing is proportionate to the number that remain. While tamoxifen affects the levels of FSH and E 2, it does not affect the antral follicle count, so may be useful in predicting future fertility in women taking tamoxifen.

If a woman still ovulates, is there any danger or risk to becoming pregnant after therapy?

The concern of possible birth defects caused by exposure of oocytes to cancer therapies is a common one. Studies have found no increase in birth defects in the children of cancer survivors, nor do these children have higher rates of cancer themselves (this does not include families with genetic cancer syndromes).

The DNA of oocytes can be damaged by cancer therapies, but this damage repairs itself by six months after treatment (the exact time to repair is unknown). For this reason, and to get beyond the highest risk of recurrence, women are counseled to wait 2 years after therapy before becoming pregnant. Individual women should discuss their own case with their oncology team and may benefit from consulting with a fertility specialist who works with cancer patients.

For breast cancer survivors, there has always been concern that pregnancy after treatment could increase the risk of recurrence, particularly in estrogen receptor-positive tumors. Few studies have looked at this risk, but those that have studied this found that pregnancy does not appear to increase the risk of recurrence. These studies did not take under consideration if the tumors were ER or PR positive, an issue which requires more investigation. Studies have not examined if it is safe for breast cancer survivors to take fertility medications if they are unable to conceive naturally.

Options for fertility preservation

There are fewer well established options for fertility preservation in women compared to in men. The majority of techniques require time, resulting in delays in treatment, which may not be possible for many women. For women without a partner or a desire to use donor sperm, the techniques are less reliable. Let's review the available options and some still in development.

Egg or Embryo Cryopreservation

Cryopreservation (freezing) of eggs or embryos requires the same collection process, which can take 2-4 weeks. Fertility-stimulating drugs are given in order to allow the release and collection of several mature oocytes. There is concern about women with potentially hormone-sensitive tumors receiving these drugs. Studies are looking at giving an estrogen-blocking drug, such as tamoxifen or letrozole, concurrently with the ovary stimulation to be safer in these women, and early studies look promising.

For embryo cryopreservation, the egg must be fertilized with sperm. This presents a problem for women without a partner or willing donor. Donor sperm can be used, but not all women find this acceptable. This technique has a pregnancy rate of 20-25% once the embryo is thawed and implanted. There is considerable cost associated with this, ranging from $8-12,000, which does not include the cost of storage (approximately $350/year), thawing, and implanting.

Cryopreservation of eggs does not require sperm because these eggs are frozen unfertilized. Unfertilized eggs are more sensitive to the freezing process, and therefore pregnancy rates are much lower. There is approximately a 2% chance of pregnancy for each thawed egg. The costs are essentially the same as embryo cryopreservation.

Oophoropexy (Ovarian Transposition)

This procedure can be used to decrease the ovaries' exposure if pelvic radiation is needed. Typically, one ovary is surgically moved to another area out of the radiation field. This is often done in conjunction with a therapeutic surgery for the cancer, but can be performed laparoscopically for women who do not require other surgery. This procedure has been performed for more than 40 years, with success rates reported anywhere between 16 and 90%. It is thought that damage to the blood vessels feeding the ovaries and “scatter” radiation (small amounts of radiation out of the main field) reaching the ovary may be to blame for lower success rates. Women have been able to conceive after this procedure, but in some cases a second procedure is needed to return the ovary to its normal location, particularly when in-vitro fertilization is needed. The cost for oophoropexy is uncertain, but if it is done during a cancer surgery, there may be very little cost associated with it.

Ovarian Tissue Freezing

Ovarian tissue freezing is still in the investigational stages, with only a few live births reported to date. One potential advantage for this technique is that it may be an option for young girls who have not reached puberty when receiving cancer therapy. Using a laparoscopic technique, multiple fragments of ovarian tissue are taken prior to the start of therapy. It is reported that 5 tissue fragments can yield 3500 follicles, which is necessary since up to 60% of follicles are lost to the freezing process.

There are several possible ways to utilize this tissue. Ovarian tissue can be implanted back into the woman (called auto-transplant), either orthotopically (in the same location it was taken from) or heterotopically (in a different location, for example, the forearm). After implantation, the tissue matures and oocytes can be collected and utilized through in-vitro fertilization procedures. This is the only tissue-preserving method that has produced live human births to date.

Another technique being tested is xenotransplantation, where the ovarian tissue is implanted in another species (usually mice) and allowed to mature, leading to obvious ethical concerns. The last and most promising option is in vitro maturation, which matures the tissue in the laboratory, then utilizes the mature oocytes for fertilization and implantation into the woman. This technique has lead to live births in mice and cows, but not in humans yet.

Many fertility clinics offer ovarian tissue freezing, but woman should be aware of the investigational nature and lack of proven success of this technique.

Radical Trachelectomy & Conservative Surgery

Radical trachelectomy is a procedure used in the treatment of cervical cancer, as an alternative to the more standard surgical treatment of hysterectomy. It is estimated that almost 50% of women diagnosed with cervical cancer under the age of 40 are eligible for some type of fertility-sparing procedure. Trachelectomy removes the cervix but leaves the uterus intact, and is best applied to early stage cases (stages IA and IB). It can be performed vaginally or through the abdomen. There is an estimated 53% chance of pregnancy over 5 years for women who have had the procedure, and there have been over 100 live births to date. These women will require cerclage (a technique to stitch the uterus closed to prevent premature birth or miscarriage). There is still a risk of premature deliveries or late miscarriages, and women may require IVF because of difficulty getting pregnant due to the lack of a cervix. These pregnancies are considered high-risk, and will require C-sections due to the cerclage and the lack of a cervix. No randomized studies exist, but recurrence rates appear to be similar in women who have undergone hysterectomy.

Another conservative surgical approach for cervical cancer is cone excision, which removes only a portion of the cervix, and is only appropriate in very early stage cases. For very early stage endometrial cancers, D&C may be sufficient, but these cases require careful examination and an experienced physician for successful outcomes. Several small studies used hormone therapy to treat early stage endometrial cancers. These studies closely followed the women for recurrence and performed hysterectomy if needed. They reported that some patients had no evidence of disease after treatment with hormone therapy and documented pregnancies in 20 patients. In cases of ovarian cancer limited to one ovary, it may be possible to maintain the healthy ovary and uterus. Studies have reported survival rates similar to those treated with more radical surgery. These options are clearly limited to only early stage disease, but can be a wonderful option in those women with early stage disease wanting to preserve fertility.

Other Techniques

One other method that has been tested is known as gonadoprotection. This works on the theory that germ cells are damaged by chemotherapy because they are rapidly dividing and reproducing. By administering medication to stunt the reproduction of these cells, perhaps they would be protected from the damage of chemotherapy. Investigators have attempted to do this with gonadotropin-releasing hormone (GnRH) agonists and antagonists or birth control pills. Studies have had mixed results and were small, making it hard to apply the results. Larger randomized studies are looking at these techniques.

Financial Issues

Fertility-preserving techniques for women come at a sometimes significant cost. The majority of patients will not have coverage for fertility-sparing procedures through their health insurance. Eleven states now require insurance companies to cover infertility diagnosis and treatment, but this still does not always cover all of the necessary tests and procedures. The National Infertility Association has a website that includes up-to-date information on each state's laws. Women should talk to their insurance companies or human resource representatives to explore what is covered.

Sharing Hope is a program administered by Fertile Hope that offers discount rates for cancer patients at participating fertility clinics. Fertile Hope also has a section on financial options for fertility preservation. Women should understand that rates can vary greatly and it may be worth shopping around. This might be a job to give to a friend who offers to help, as it can be a time- consuming effort.

The Future

We have a long way to go in helping women facing cancer therapy to preserve their fertility. The future may see advances in tissue cryopreservation or new techniques to protect the ovaries and gynecologic organs from the damage of current therapies. A first step is making sure women know the options currently available to them, which is unfortunately not always done.

Some Terminology

• Amenorrhea: an absence of menstruation or periods
• Antral Follicle: final stage of growth of the oocyte
• Cryopreservation: freezing at extremely low temperatures to preserve something (-195 degrees Celsius in this case)
• Follicle: fluid-filled sac in the ovary that nurtures the developing oocyte
• Follicle or oocyte pool: number of follicles or oocytes remaining in the ovary
• Follicle reserve: number of remaining follicles, this naturally decreases with age
• GY: Gray, international unit of absorbed radiation dose
• Oocyte: an unfertilized egg
• Ovarian failure: a condition in which the ovaries stop working, resulting in decrease in hormone production, and cessation of menses and ovulation.

References

Devita, VT, Hellman, S & Rosenberg, SA. Cancer: Principles & Practice of Oncology (7 th edition). Lippincott Williams & Wilkins, Philadelphia, PA 2005.

Lee SJ, Schover LR, Partridge AH, et al: American Society of Clinical Oncology recommendations on fertility preservation in cancer patients. Journal of Clinical Oncology 24:2917-31, 2006.

Leitao, MM & DS Chi: Fertility-sparing options for patients with gynecologic malignancies. The Oncologist 10:613-622, 2005.

Nieman CL, Kazer R, Brannigan RE, et al: Cancer survivors and infertility: a review of a new problem and novel answers. Journal of Supportive Oncology 4:171-8, 2006.

Oktay, K, Oktem, O, Reh, A & L Vahdat: Measuring the Impact of Chemotherapy on Fertility in Women with Breast Cancer. J Clin Oncol 24:4044-4046, 2006.

Schover L. State-of-the-art: parenthood after chemotherapy. Program and abstracts of the American Urological Association 2006 Annual Meeting; May 20-25, 2006 ; Atlanta, Georgia. Plenary Session II.

Simon B, Lee SJ, Partridge AH, et al: Preserving fertility after cancer. CA: A Cancer Journal for Clinicians 55:211-28; quiz 263-4, 2005.

Thomson, AB, Critchley, H, Kelnar, CJ and WHB Wallace: Late reproductive sequelae following treatment of childhood cancer and options for fertility preservation. Best Practice & Research Clinical Endocrinology & Metabolism, 16(2) 311-334, 2002.

Wallace, WH & TW Kelsey: Ovarian reserve and reproductive age may be determined from measurement of ovarian volume by transvaginal sonography. Human Reproduction 19:1612-1617, 2004.

Insomnia, or trouble sleeping, is a common problem for patients with cancer. Several recent studies have reported an incidence of 30 to 50% in this group, compared to 15% in the general population. In addition, symptoms of insomnia were found in 23 to 44% of patients 2 to 5 years after treatment for cancer. Despite this prevalence, one study found that only 16% of patients with insomnia informed their healthcare provider about the problem, and many practitioners failed to ask about sleep. This likely occurs for one of several reasons: insomnia may be viewed as a normal reaction to the cancer diagnosis and treatment, insomnia may be viewed as a lesser priority than the cancer treatment, and practitioners may lack the knowledge to diagnose and treat this problem.

Insomnia can present as difficulty falling asleep, multiple awakenings during the night, or early morning awakenings with the inability to get back to sleep. Patients may have one or all of these complaints, but they must meet specific criteria in order to be classified as the insomnia syndrome as defined by the International Classification of Sleep Disorders. These criteria are: difficulty sleeping characterized by either (or both) 30 minutes or more to fall asleep, or more than 30 minutes of night time awakenings, with a ratio of total sleep time to time spent in bed less than 85%. The sleep disturbance must occur at least 3 nights per week, and cause significant impairment of daytime functioning or marked distress. Many patients may not fit these specific criteria, but suffer from the symptoms of insomnia, adversely affecting their quality of life. Insomnia can lead to fatigue, memory and concentration problems, mood disturbances and psychiatric disorders. Studies have suggested that insomnia may play a role in physical symptoms, shorter lifespan and immunosuppression. For these reasons, and to improve quality of life, patients should seek and be offered treatment for insomnia.

The potential causes of insomnia are many. A personal or family history of insomnia, the presence of a depression or an anxiety disorder, advanced age, and female gender all put a patient at higher risk of developing insomnia. Factors that may contribute to the development of insomnia include: certain medications, hospitalization, chemo, radiation, or hormonal therapy, pain, hot flashes, nausea and vomiting. Several additional factors, that can often be easily modified, include an irregular sleep schedule, excessive amount of time spent in bed, napping, engaging in sleep interfering activities in the bedroom, and unrealistic sleep expectations.

Treatment

How should insomnia be treated? Initially, the underlying cause of the insomnia should be addressed. Treatment of symptoms such as pain, nausea, depression and hot flashes, may improve insomnia symptoms. If the insomnia persists, patients may be treated with a combination of pharmacologic and psychologic therapy. The most commonly used treatment for patients with insomnia are hypnotic medications; the table below lists some of the more common agents and their side effects. These agents have disadvantages, including toxicity when combined with other sedating agents, residual next-day effects, risk of dependence, and rebound insomnia when stopped, and therefore should not be taken for longer than 2 to 4 weeks. These medications should not be mixed with other sedating agents or alcohol.

The same cautions should be taken with over the counter sleep aids. Many of these agents contain antihistamines, which are designed to treat allergies, not to treat insomnia. Antihistamines have the side effect of causing sleepiness, but may be less effective than prescription agents. The patient's healthcare practitioner can determine which medication, if any, would be best for them.

Several herbal products, available over the counter, are used to treat insomnia. These include melatonin, kava-kava and valerian. Herbal products and nutritional supplements are not required to undergo the same rigorous testing as prescription medications in order to meet government standards. Their long-term impact, side effects and possible interactions with other drugs or medical conditions are often not known. These medications should be discussed with your health care provider and used with extreme caution. Learn more about herbal supplements for insomnia at the National Center for Complementary and Alternative Medicine.

Non-Pharmacologic Treatments

There are several non-pharmacologic treatments for insomnia, which have been used in healthy patients, and may be useful for cancer patients. Studies have reported that 70 to 80% of the patients treated benefited from these psychologic treatments, and that improved sleep continues up to 24 months after the initial treatment. These treatments include stimulus control therapy, sleep restriction procedures, relaxation therapy, cognitive therapy, and sleep hygiene education. Best results are obtained when a combination of these techniques is used.

Stimulus control therapy consists of reassociating bedtime and the bed / bedroom with sleep and establishing a regular sleep-wake cycle. This can be accomplished by developing a pre-bedtime ritual, going to bed only when sleepy, and when unable to fall asleep (or go back to sleep) after 20 minutes, leave the bedroom and return when sleepy. Maintain a regular wakeup time and try not to nap. When necessary, limit naps to 30 minutes and not after 3 pm. Use the bed for sleep and sexual activities only. Do not watch television, eat, or read in the bed. Sleep restriction procedures require the time spent in bed to be limited to the amount of time sleeping. Curtailing the time in bed causes mild sleep deprivation, leading to more efficient sleep.

Relaxation therapy includes muscle relaxation, biofeedback, imagery training, hypnosis, and thought stopping. Professionals, who specialize in instructing these techniques, may be available at local cancer centers or support communities, but patients can accomplish some of these techniques on their own. Patients may find deep breathing, stretching, meditation or prayer to be relaxing. A warm bath, warm glass of milk or cup of chamomile tea at bedtime can help to induce a restful state. Alcohol should be avoided, as it may cause initial tiredness, but then leads to fragmented sleep.

Cognitive therapy aims to identify and change dysfunctional beliefs and attitudes about sleep and insomnia, which may be contributing to the development of anxiety. These beliefs can include unrealistic sleep requirements, the role of sleep disturbance in daytime impairment, and the usual pattern of insomnia.

Sleep hygiene involves changing current health practices and environmental factors that may interfere with sleep. This includes avoiding caffeine and alcohol for 4 to 6 hours before bedtime, avoiding heavy or spicy meals before bedtime. Use the bed for sleep and sexual activity only, remove the TV from the bedroom. Keep the sleep environment dark, quiet, cool, and comfortable. People with insomnia tend to look frequently at the clock - this may only serve to heighten anxiety and worsen the insomnia. Exercise regularly, as little as 20 minutes, three times a week, can promote better sleep, although this should not be done too close to bedtime.

Create a bedtime routine for yourself. This may involve reading, listening to relaxing music, drinking herbal tea (such as chamomile or lavender), a warm bath or just having some quiet time. When done regularly, this routine will signal to your brain that it is time to go to sleep.

Insomnia is recognized as a common complaint in patients with cancer and cancer survivors. Nevertheless, this problem has only recently received attention from cancer researchers. Studies are ongoing to determine the etiology of insomnia in this population and the appropriate treatment. While research continues, patients should understand the implications of insomnia, experiment with non-pharmacologic treatments, and discuss the problem with their healthcare provider.

References & Further Reading

• The National Sleep Foundation
• The National Heart, Lung, and Blood Institute at the National Institutes of Health
• Talk About Sleep - An International Sleep Community
• National Cancer Institute - Sleep Disorders
• Davidson, J., Waisberg, J., Brundage, M., & Maclean, A. (2001). Nonpharmacologic Group Treatment of Insomnia: A Preliminary Study with Cancer Survivors. Psycho-Oncology, 10, pp.389-397.
• Engstrom, C., Strohl, R., Rose, L., Lewandowski, L., & Stefanek, M. (1999). Sleep Alterations in Cancer Patients. Cancer Nursing, 22(2), pp. 143-148.
• Epstein, D.R. & Dirksen, S.R. (2008). Randomized trial of a cognitive-behavioral intervention for insomnia in breast cancer survivors. Oncology Nursing Forum, 34(5), 51-59.
• Hirst, A. & Sloan, R. (2009). Benzodiazepines and related drugs for insomnia in palliative care. Cochrane Database of Systematic Reviews, (4); CD003346.
• Savard, J., & Morin, C. (2001). Insomnia in the Context of Cancer: A Review of a Neglected Problem. Journal of Clinical Oncology, 19(3), pp. 895-908.

What is Lymphedema?

Lymphedema is a chronic swelling that happens when lymph fluid is not moving well and protein-rich fluid accumulates in the tissues. It is non-painful and is not life threatening.

The lymph system consists of lymph nodes and vessels. The lymph vessels run parallel to the blood vessels. The lymph system helps to manage fluid volume and fight disease. Lymph nodes and vessels drain excess fluid from the entire body and return it to the blood near the heart. Lymph nodes filter viruses, dying cells, foreign matter, and bacteria to fight infection. The lymph system also recycles proteins through the body. Lymphedema develops slowly unless there is trauma or infection to the area of the body where your lymph nodes and vessels are not working.

Types of Lymphedema

In some cases, people inherit or are born with a poorly working lymph system. This is called primary lymphedema. Lymphedema can also occur as a result of damage, such as trauma, surgery or radiation for cancer treatment, to the lymph nodes or lymph vessels. Damaged leg veins or a history of blood clots can cause a back up of blood and fluid in the small vessels of the body and progress to the lymph system. These are all causes of secondary lymphedema.

Lymphedema Risk

Your risk for developing lymphedema increases with the greater the number of lymph nodes removed, receiving radiation therapy, being overweight, having active cancer, or having an infection/injury to the body part at risk for swelling. Not all swelling in the body is lymphedema. Be sure to discuss swelling anywhere in your body with your physician/nurse or therapist, even if the swelling comes and goes. For more information on lymphedema risk, see the article on risk reduction for lymphedema. Learn more about lymphedema risk reduction.

What Are Some Signs of Lymphedema Development?

Signs of lymphedema development include slow progression of swelling, which typically begins at the far end of your limb (hands and feet) and then moves up the arm or leg. Skin can be pitting (when a finger is pressed into the area the indentation remains.) In stage I, this swelling may reduce with elevation. In stage II and III lymphedema, there is progressive hardening of the tissues in the affected area. With increased protein-rich swelling, there is a risk for bacterial growth and infection.

What Skin Changes Are Seen with Lymphedema?

Skin changes may occur with the development of lymphedema. Local infections, often called "cellulitis," may cause the limb to become red, hot, painful and swollen. This infection can spread quickly, so early diagnosis and treatment is the key to keeping the infection and swelling under control.

Lymphedema can be pitting or non-pitting edema (swelling). Pitting edema is present when a mark is left in the skin by applying finger pressure. This is often seen with a recent accumulation of fluid and protein.

Hyperkeratosis and papillomas may also be seen in someone with lymphedema. Hyperkeratosis is an overgrowth of the skin like a very thick callus. Papillomas are raised wart-like growths that can appear on the skin of people with longstanding lymphedema.

How is Lymphedema Diagnosed?

Your medical history is the key to the diagnosis of lymphedema. Your physician will look at your history from cancer diagnosis to treatment along with any past surgeries or medical history. These factors will be used to help determine your risk for lymphedema

Physicians will use clinical and diagnostic tools to determine a specific diagnosis of lymphedema. Some of these tests are also used to rule out other causes of swelling.

1. Look and feel of the skin.
2. Stemmer sign". This sign indicates a hardening or loss of flexibility of the folds of skin on the top of the toes and fingers. The skin cannot be pinched and lifted or is difficult to lift. A negative Stemmer sign does NOT indicate that there is no lymphedema.
3. Swelling in the limb. Swelling can be determined by a few methods – but most physicians will take measurements around your arm or leg at standard spots along both limbs. For example, patients with arm lymphedema may be measured at the knuckles, wrist, elbow and upper arm. They will compare both sides to determine if one is larger than the other.
4. Diagnostic tests such as Doppler ultrasound , lymphoscintigraphy, CT and MRI are examples of some of the tests that may be used to determine if lymphedema is present. These tests are also used to rule out local infection (phlebitis) or blood clot (DVT) as the cause of the swelling. X-rays, bone scans or blood work may be done to rule out a recurrence of cancer.

When these tests are negative for other causes, the patient history and physical examination are usually sufficient to make the diagnosis of lymphedema

Specific tests of the lymphatic system are usually reserved for cases where the diagnosis is unclear or if more specific information about the lymphatic structure is necessary. Diagnostic tests may include lymphoscintigraphy, ultrasound, CT or MRI. Lymphoscintigraphy is a nuclear medicine test where an agent is injected into the lymphatic system. This fluid is then followed as it is carried through the body and is used to determine the structure and function of the lymphatics. Ultrasound can visualize enlarged lymph nodes. Computerized tomography (CT) scans are useful to look for soft tissue growths in the lymph nodes or to determine metastatic disease.

What Do the Stages of Lymphedema Mean?

There are 3 stages of lymphedema based on how long the fluid has been in the body part and what type of changes are seen as a result of the fluid. In Stage I, there is very little swelling. The swelling that does exist may come and go. At this stage, the lymphedema is said to be reversible. There may be times when there is NO swelling.

In Stage II, there is considerably more swelling, because the fluid is the tissues. In this stage, there is obvious swelling of the limb. The skin may feel tighter and may be shiny. The tissue may also feel thick and firm to the touch; the tissue may form pits when pressed. These changes are caused by scar tissue, or fibrosis, beginning to form. The fluid CAN be moved out of the tissue, but it won't happen without help from the outside.

Stage III lymphedema is a severe and prolonged accumulation of edema or swelling in the body part. The skin can become hardened with a leathery feel. The color of the skin can become darker with a brownish tint. There may also be papillomas of the skin, which are small bumps that form on the skin and may leak fluid. This stage is termed Lymphostatic elephantiasis. It is not possible for the body to clear the fluid on its own. Even with intense therapy, this fluid is difficult to remove. However, since the skin is such a dynamic organ, tissue changes and softening may be seen with treatment. Learn more about lymphedema treatment.

For further information on lymphedema please see:

National Lymphedema Network: 1-800-541-3259
Check the Position Papers for information on a variety of lymphedema related topics.

Lymphoedema Association of Australia

American Cancer Society: 1-800-ACS-2345

Next Article: Understanding and Decreasing Lymphedema Risk »

How does cancer therapy effect fertility?

It is important to understand that chemotherapy works by killing rapidly dividing cells. Chemotherapy is able to destroy large numbers of cancer cells because they are rapidly dividing and abnormally reproducing. Many other cells in our bodies are also constantly dividing, including those lining the gastrointestinal tract, hair follicles, and germ cells (including sperm and oocytes or eggs). Because these cells also become targets, we see side effects related to their destruction, such as diarrhea, mouth sores, hair loss, and infertility, respectively.

Spermatozoa (sperm) production is the primary requirement for male fertility. Sperm develop and mature in the seminiferous tubules, located within the testes, which sit in the scrotum. There is constant production and development of sperm, making them a prime target for chemotherapy. Prior to puberty there is no sperm production, but germ cells are still present and continually reproducing, thus making them a target of chemotherapy as well. Germ cells and sperm can also be damaged by radiation, even in low doses. In some cases, this damage is reversible, but predicting which men will suffer permanent sterility is very difficult.

Another important group of cells within the testes are the Leydig cells, which are responsible for testosterone production. Without testosterone, a boy may not achieve puberty, or an adult male may experience loss of secondary sex characteristics (facial hair, mature genitals and deep voice) or abnormal sexual functioning. Leydig cells can be damaged by radiation, but are not as sensitive to it as sperm/ germ cells and thus require much higher doses to cause damage. In addition, Leydig cells are unlikely to be damaged by chemotherapy. Therefore, it is possible to have azoospermia (absence of sperm in the semen) due to damage to the germ cells, but still maintain normal sexual function because the Leydig cells are not damaged.

One other piece to the puzzle is the pituitary gland, located in the brain. This gland produces hormones (LH and FSH), which in turn stimulate sperm and testosterone production within the testes. Radiation therapy to the brain can damage the pituitary gland, ultimately affecting sperm and testosterone production.

The effect of cancer on sperm

Certain cancers can cause men to have poor sperm quality, even prior to treatment. It is estimated that about 40% of men with Hodgkin's disease and 50% of those with testicular cancer will have low sperm counts at the time of diagnosis. This does not mean that these men should not consider sperm banking, as advances in reproductive techniques (discussed later in this article) have made even poor quality specimens useful for reproduction.

Chemotherapy and fertility

It is extremely difficult to predict which men will become infertile as a result of chemotherapy treatments. The effects are dependent on the type and number of chemotherapy drugs received, as well as the cumulative dose received. The group of chemotherapies called alkalating agents are known to be the biggest offenders, but this varies based on the dose received. Table 1 addresses some common doses of chemotherapies and the likelihood of azoospermia. It is estimated that 90% of patients who receive high doses of alkalating agents will have long-term azoospermia. For those patients who have undergone stem cell transplants, 50% will have azoospermia, while the rates are as high as 80% for those who received total body irradiation (TBI) in preparation for the transplant.

In the past 15 years, numerous new chemotherapies and biologic therapies have been developed, and the effects of these agents on fertility are not yet known.

Table 1 : Adapted from Devita, VT et al, Cancer: Principles & Practice of Oncology (7 th edition) 2005.

To complicate things further, in many cases, azospermia (no sperm) or oligospermia (low sperm count) is temporary, with sperm production recovering in the months to as long as 4 years following therapy. Sperm counts do appear to be lower after chemotherapy, and there can be damage to the genetic makeup (DNA) of sperm after chemotherapy. Research has found that this damage is repaired by two years after therapy, although the exact time to repair is not known. For this reason, men are typically counseled to wait two years after therapy before fathering a child.

Radiation and fertility

The likelihood of infertility after radiation depends on the dose to the testes, shielding, and fractionation (single dose vs. multiple doses). Doses as small as 0.1 Gy can result in decreased sperm counts, and doses of 1.5-4 Gy can result in permanent sterility. As previously noted, the Leydig cells (responsible for testosterone production) are less sensitive to the effects of radiation, with damage occurring at 30 Gy in mature males (20 Gy in prepubescent males).

If the testicles are not the primary radiation target, shielding can be used. This technique protects the testicle(s) from receiving radiation. Fractionation is the technique of dividing the total dose of radiation into multiple smaller doses. For most side effects, fractionation is used to lessen their severity, but in this case fractionation (multiple smaller doses) causes more damage to sperm than a larger, single radiation dose.

Total body irradiation (TBI) is a technique used for preparation for stem cell and bone marrow transplants. As the name implies, it is irradiation of the entire body. It is estimated that 80% of men who undergo TBI will have permanent azoospermia.

For those without permanent azoospermia, sperm counts are at their lowest 4-6 months after treatment. Counts typically return to their pretreatment levels 10-24 months after treatment, but can take longer in those who received higher doses.

Surgery and fertility

If the cancer surgery requires the removal of both testes, fertility is affected because of the inability to produce sperm. Surgery on the prostate, bladder, urethra, or colon can result in a condition called retrograde ejaculation. In normal ejaculation, the semen is propelled through the urethra (the same tube that carries urine from the bladder), and the opening to the bladder closes off, allowing the semen to exit the penis. In retrograde ejaculation, the opening to the bladder does not close, allowing the semen to enter the bladder instead of exiting the penis. While this condition is not medically harmful, it does impair fertility.

If a man still produces sperm, is there any danger or risk to fathering a child after therapy?

The concern of possible birth defects caused by exposure of sperm to cancer therapies is a common one. Studies have found no increase in birth defects in the children of cancer survivors, nor do these children have higher rates of cancer themselves (this does not include families with genetic cancer syndromes).

The DNA of sperm can be damaged by cancer therapies, but this damage repairs itself by two years after treatment (the exact time to repair is unknown). For this reason, men are counseled to wait 2 years after therapy before fathering a child.

Options for fertility preservation

Sperm banking

Cryopreservation (freezing & storage) of sperm is the only proven method of fertility preservation in men and has been around for over 50 years. For many men with cancer, sperm quality can be poor even before beginning therapy, and this was previously seen as a reason to forgo cryopreservation. In recent years, the techniques used for in-vitro fertilization (IVF) have improved greatly, and the use of intracytoplasmic sperm injection (ICSI) has proven successful even with limited number of sperm in a sample. In some cases, there is no room for delay in treatment, and the man may be limited to 1 or 2 sample collections. However, with the newer techniques this can be sufficient. Samples are best collected prior to starting therapy for cancer, but can be collected after therapy has started. In those cases where collection takes place after cancer therapy has begun, men should be aware of the possibility of genetic damage to this sperm. This damage and subsequent risk to the fetus has not been well studied, so there are no statistics on the probability of problems.

How does it work? Men are referred to the fertility center, where they receive information on the facility's policies and procedures and then sign consent forms related to storage. Semen samples are best collected through masturbation after refraining from sexual activity for 2-5 days. Additional samples should be collected with at least 48 hours between samples for optimal numbers of sperm. In men who do not have adequate sperm in their semen, sperm can be obtained by using a needle to withdraw sperm from the testicle (aspiration).

The samples are then mixed with a substance to protect them from the freezing and thawing process. They are slowly frozen to temperatures below -195 degrees Celsius and stored. When the samples are needed, they are slowly thawed to protect the sperm from damage. Successful fertilization has been achieved with samples stored for as long as 20 years. It is not known exactly how long sperm can survive the freezing process.

The cost of collection, freezing, and storage varies greatly, and if this is a consideration, it may be worth a few phone calls to obtain pricing. Prices for collection, processing, and freezing range from $80 to $500. There are then fees to store the samples, which can be charged monthly, yearly, or for a period of 1-5 years paid in advance. These fees can range from $85 - $400 per year. In some cases, insurance may cover these fees, so check with the insurance company. There is also considerable cost associated with IVF on the other end of the spectrum, but that may be a bridge to cross when you get there.

Other preservation techniques being studied

Although sperm banking is a good option for many, there are men who cannot delay treatment by a few days and there are boys treated prior to puberty who do not have this option. There are a few techniques being studied, but unfortunately, they are still in the research stage.

Testicular tissue freezing is being studied in humans and animals as a way to preserve fertility. Testicular tissue would be removed prior to the start of cancer therapy and frozen in methods similar to sperm freezing. For prepubescent boys, this tissue would be thawed and implanted in the man or thawed and grown in the laboratory after puberty, with the hope of the tissue starting to produce sperm. For mature men unable to produce sperm, this tissue may be implanted or thawed in the laboratory and sperm extracted. This technique has been successful in animals, but there have been no live human births to date. Many fertility clinics perform this technique, but men should be aware that this is purely experimental at this time. This technique costs approximately $3000, not including fees for storage and IVF or implantation to utilize the tissue or sperm.

One other method that has been tested is called gonadoprotection. This works on the theory that germ cells are damaged by chemotherapy because they are rapidly dividing and reproducing. By administering medication to stunt the reproduction of these cells, perhaps they would be protected from the damage of chemotherapy. This did not prove true when tested in humans and sperm production did not recover after therapy in the men studied.

The future

Although sperm cryopreservation is a reliable option for many men, it excludes the numerous childhood cancer survivors from the dream of starting a biologic family. Future research will hopefully find methods to preserve fertility in these young men. Testicular tissue cryopreservation holds great hope and will be a focus in the years to come.

References

Devita, VT, Hellman, S & Rosenberg, SA. Cancer: Principles & Practice of Oncology (7 th edition). Lippincott Williams & Wilkins, Philadelphia, PA 2005.

Lee SJ, Schover LR, Partridge AH, et al: American Society of Clinical Oncology recommendations on fertility preservation in cancer patients. Journal of Clinical Oncology 24:2917-31, 2006

Nieman CL, Kazer R, Brannigan RE, et al: Cancer survivors and infertility: a review of a new problem and novel answers. Journal of Supportive Oncology 4:171-8, 2006

Simon B, Lee SJ, Partridge AH, et al: Preserving fertility after cancer. CA: A Cancer Journal for Clinicians 55:211-28; quiz 263-4, 2005

What is mucositis?

Mucositis is a medical term that is used to refer to mouth sores, oral mucositis, or esophagitis. It can range in severity from a red, sore mouth and/or gums to open sores that can cause a patient to be unable to eat. The lining of the entire gastrointestinal tract (mouth, throat, stomach, and bowel) is made up of epithelial cells, which divide and replicate rapidly. Imagine this: if you bite your lip, the tissue is often able to heal by the next day because of this rapid growth. Chemotherapy and radiation therapy kill not only cancer cells, but other rapidly dividing cells as well, including the lining of the entire gastrointestinal tract. This article will discuss the effects on the lining of the mouth and throat (this lining is called the mucosa).

Oral mucositis leads to several problems, including pain, nutritional problems as a result of inability to eat, and increased risk of infection due to open sores in the mucosa. It has a significant effect on the patientÕs quality of life and can be dose- limiting (requiring a reduction in subsequent chemotherapy doses).

Signs and symptoms of mucositis include:

• Red, shiny, or swollen mouth and gums
• Blood in the mouth
• Sores in the mouth or on the gums or tongue
• Soreness or pain in the mouth or throat
• Difficulty swallowing or talking
• Feeling of dryness, mild burning, or pain when eating food
• Soft, whitish patches or pus in the mouth or on the tongue
• Increased mucus or thicker saliva in the mouth

Who gets mucositis?

Over forty percent of patients who receive chemotherapy will develop some degree of mucositis during the course of their treatment. Patients receiving radiation to the head, neck, or chest areas, and patients who undergo bone marrow or stem cell transplant, are even more likely to develop mucositis. Certain chemotherapy agents are more likely to cause this side effect (Table 1), as is total body irradiation, often used for bone marrow transplants.

Prevention and treatment

There have been numerous studies trying many different medications and interventions to reduce the incidence and severity of oral mucositis. Unfortunately, only a few of these interventions have shown much success. It is known that a good oral care regimen (Table 2) can help in preventing or decreasing the severity of mucositis and can help prevent the development of infection through open mouth sores. The mainstay of an oral care regimen is mouth rinses, and numerous studies have determined that just plain old salt water is the best and most cost effective mouth rinse available. A mouth rinse aides in removing debris and keeping the oral tissue moist and clean. Other important components include using mouth and lip moisturizers, using a soft-bristle toothbrush, maintaining adequate intake of fluids and protein, and avoiding irritating foods, alcohol and tobacco.

Table 2: Example of oral care protocol

• Rinse mouth (swish and spit) before and after meals and at bedtime with either:
  • Normal saline (1 tsp of table salt to 1 quart (32 oz.) of water)
  • Salt and soda (one-half tsp of salt and 2 tbsp of sodium bicarbonate in 1 quart of warm water)
• Use a soft-bristle toothbrush after meals and at bedtime. If the brush causes pain, toothettes may be used
• Use a non-abrasive toothpaste (or mix 1 tsp baking soda in 2 cups water). Avoid toothpastes with whiteners.
• Keep lips moist with moisturizers. Avoid using Vaseline (the oil base can promote infection).
• Avoid products that irritate the mouth and gums:
  • Avoid commercial mouthwashes and those with alcohol
  • Limit use of dental floss, DO NOT use with platelets below 40,000
  • Do not use lemon or glycerin swabs or toothbrushes without soft bristles
• Increase your fluid intake.
• Try to include foods high in protein in your diet.
• Avoid hot, spicy or acidic foods, alcohol, hard or coarse foods (crusty bread, chips, crackers).
• If you wear dentures:
  • Remove whenever possible to expose gums to air
  • Loose fitting dentures can irritate the mouth and gums and should not be worn
  • Do not wear dentures if mouth sores are severe

Do not smoke cigarettes, cigars or pipes. Do not use smokeless tobacco (chewing tobacco, snuff)

Cryotherapy, which involves sucking on ice chips during chemotherapy administration, has shown some effect in preventing mucositis caused by 5-FU (fluorouracil). Two agents, Gelclair® and Zilactin®, are mucosal protectants that work by coating the mucosa, forming a protective barrier for exposed nerve endings. These agents resulted in improved pain control, and ability to eat and speak in clinical trials. Amifostine (Ethyol®), a drug that protects against the damage to the mucosa caused by radiation, is approved by the FDA for patients receiving radiation therapy for cancers of the head and neck. Studies have demonstrated that amifostine can reduce dry mouth and may prevent mouth sores; however, more research is needed. Other agents that have been studied include: capsaicin (derived from chili peppers), glutamine, prostaglandin E2, Vitamin E, sucralfate, and allopurinol mouthwash.

Keratinocyte growth factor (KGF) is a substance produced naturally in the body that stimulates the growth, repair, and survival of cells that protect the lining of the mouth and GI tract. A manmade version of human KGF has been developed as the drug palifermin, and is currently indicated for use in patients with hematologic malignancies or blood cancers (leukemias, lymphomas and myelomas) who are undergoing bone marrow or stem cell transplant. Palifermin was found to decrease the length and severity of mucositis in these patients.

Pain control

Pain is a significant problem related to mucositis and warrants early intervention. In mild cases, ice pops, water ice, or ice chips may help numb the area, but most cases require more intervention for relief or pain.

Topical pain relievers include lidocaine, benzocaine, dyclonine hydrochloride (HCl), and Ulcerease® (0.6% Phenol). One of the issues of using topical agents is the inability to effectively coat all areas and that the pain relief is brief. In patients with mucositis that do not achieve pain relief with topical agents, narcotic analgesia is often necessary. This may require a hospital admission for intravenous (IV) pain medications until the mucosa begins to heal, particularly in patients unable to swallow. It is important to note that this side effect is temporary and the use of narcotics for the relief of pain caused by mucositis will be temporary as well. Patients should not “suffer through it” to avoid using narcotics, they will not become addicted to them when used for this very real pain.

One popular topical agent is “magic mouthwash” a mix of lidocaine, diphenhydramine and Maalox. This has not been proven effective and Maalox further dries the tissue, which can add to the complication. It is best to use lidocaine alone in a swish and spit method.

Patients receiving radiation therapy to the chest/head/neck area or chemotherapy should examine their mouths at least once a day for redness, sores, or signs of infection. The healthcare team should be notified if they notice worsening sores, white patches, pus, a “hairy” or thick feeling tongue, bleeding in the mouth, or development of a fever (temperature greater than 100.4).

Research continues into many new agents to prevent or treat mucositis, but at this point, it remains a challenging, costly, and distressing side effect.

References

Materials and photos adapted from Amgen Inc., 2006 teaching materials on Palifermin (Kepivance™)

Eilers J. Nursing interventions and supportive care for the prevention and treatment of oral mucositis associated with cancer treatment. Oncology Nursing Forum. Online. 31(4 Suppl):13-23, 2004 Jul.

Cawley MM. Benson LM. Current trends in managing oral mucositis. Clinical Journal of Oncology Nursing. 9(5):584-92, 2005 Oct.
National Cancer Institute website, www.cancer.gov

Sonis ST. Oral mucositis in cancer therapy. The Journal of Supportive Oncology. 2(6 Suppl 3):3-8, 2004 Nov-Dec.

Worthington HV. Clarkson JE. Eden OB. Interventions for treating oral mucositis for patients with cancer receiving treatment. Cochrane Database of Systematic Reviews. (2):CD001973, 2004.

More Information

Mucositis Tip Sheet: Here you will find helpful tips from our Oncology Nurse Educator about oral mucositis (mouth sores). You will find information that explains what oral mucositis is, why it happens, how it is treated, and what you can do to prevent yourself from developing it.

Mucositis Medications: Find out about medications which may be used to decrease the chance of developing oral mucositis (mouth sores) or to shorten the duration of oral mucositis in some cancer patients receiving chemotherapy and radiation therapy.

• Palifermin (Kepivance™)
• Amifostine (Ethyol®)

 

What are white blood cells?

White blood cells (WBC) are just one piece of the very complex immune system in our bodies. This system is responsible for fighting infection and protecting our bodies from harmful bacteria, viruses and other foreign invaders. There are five different types of white blood cells, each with its own purpose in the immune system: neutrophils (accounting for 50-70% of the WBCs), lymphocytes (25-35%), monocytes (4-6%), basophils (0.4-1%), and eosinophils (1-3%). A WBC count with differential is the blood test that reports the numbers of these cells in the blood.

What are neutrophils and neutropenia?

Neutrophils make up the majority of WBCs and are formed in the bone marrow. They are the “first responders” and quickly appear at the site of infection, ingesting and destroying foreign particles. They can be found in the pus of a wound and play a role in acute inflammation (redness, warmth, swelling, and pain). A normal neutrophil count (also called absolute neutrophil count or ANC) is between 2500 and 5000. A low neutrophil count is known as neutropenia. Neutropenia can be caused by a congenital or inherited disorder, or can be a side effect of a medication or radiation therapy. Chemotherapy medications are the most common cause of neutropenia, but other medications can also cause neutropenia, including (but not limited to): sulfonamides (Bactrim), allopurinol, ibuprofen, indomethasone, several types of antibiotics, blood pressure and anti-seizure medications. For the purposes of this article, we will only discuss neutropenia caused by cancer therapies.

Mature neutrophils are sometimes called “segs”, named for their segmented nucleus. Immature neutrophils are called “bands” because their nucleus appears banded. These 2 counts together make up the absolute neutrophil count, or ANC.

Cancer therapies, including chemotherapy, biotherapy, and radiation therapy, can cause neutropenia. This is because these therapies are unable to tell the difference between cancer cells and healthy cells. Most chemotherapies work by killing rapidly dividing cells. Cancer cells divide rapidly, but so do blood / bone marrow cells, hair follicles, and the cells that line the gastrointestinal tract (mouth, throat, stomach, and bowel). Damage to these normal cells leads to the side effects we see with chemotherapy (low blood counts, hair loss, mouth sores, and diarrhea). Radiation damages blood cells by affecting the marrow production in the bones in the area of treatment.

Why is neutropenia important?

A low neutrophil count greatly increases the risk of developing an infection because your usual mechanism to respond to infection (neutrophils) is not available. There are various levels of neutropenia, but the lower the ANC, the higher the risk of developing infection.

Grades of Neutropenia

• •  An ANC between 1000 and 1500 is considered mild neutropenia (causing minimal risk of infection)
• •  An ANC between 500 and 1000 is considered moderate neutropenia (causing moderate risk of infection)
• •  An ANC less than 500 is considered severe neutropenia (causing a severe risk of infection)

What is a nadir?

Nadir is a term used by the healthcare team to describe the point after treatment when your blood counts are at their lowest. This can include white blood cells, red blood cells, and/or platelets, depending on the type of treatment you received and your body's response to the treatment. This decrease in blood counts is also called myelosuppression. With chemotherapy, this often occurs 7-10 days after treatment. Your blood counts will then slowly climb back to an acceptable level before the next treatment. If your blood counts have not gotten back to an acceptable level, your healthcare team will hold off on giving you more therapy. Giving you more therapy with blood counts that are too low could make it very difficult for your body to recuperate.

What can I do to avoid infection?

Hand washing, hand washing, hand washing! This is the number one way to prevent infection. This should include you and all other members of the household. If you are around small children, teach them to wash their hands and make it their way to participate and to help you get better. Avoid large crowds, like the mall during the holidays. Avoid people you know are sick; this includes colds, viruses or other infections. If they must visit, tell them to make it a phone visit. It is also a good idea to avoid people who live in a house with other people who are sick. For instance, Aunt Susie's three kids are sick, but she feels fine, so she's going to come for a visit. Err on the side of caution and tell her to stay home.

Now, even the best hand washers can get an infection, so you need to be on the lookout for the signs. We often think of developing a high fever, redness, swelling, or pus as signs of an infection, but remember these signs are the job of the neutrophils and they are on vacation! When your counts are low, you must take even the slightest sign as serious and notify your healthcare team- even if it is 3 am on Saturday night. A temperature of 100.5 can be a sign of an extremely dangerous situation in a patient on treatment, so don't take the chance. Make sure you know the number to call if you need to report a fever or other problem on a night or weekend!

Signs of Infection to Watch for:

• Temperature > 100.4°F Shaking chills
• Cough Sore throat
• Burning with urination New lower back pain
• Blood in urine Diarrhea (worsening)
• Rash
• Redness, soreness around central line catheter or a wound

What can be done to prevent neutropenia?

Unfortunately, there is no magic vitamin we can take or food we can eat to prevent neutropenia. Fortunately, there is a group of medications called growth factors, or colony stimulating factors, that can help prevent neutropenia or help make the time you are neutropenic shorter. There are a few growth factors available in the United States: filgrastim (Neupogen®, pegfilgrastim (Neulasta®) and sargramostim (Leukine®). These are manmade versions of a protein, naturally produced in the body that stimulates neutrophil production. These medications are given as a subcutaneous injection (just under the skin) and are started no sooner than 24 hours after chemotherapy. In the case of filgrastim and sargramostim, they are given once a day until the nadir point passes and the ANC returns to a normal level. In the case of pegfilgrastim, only one injection is required, given 24 hours after chemotherapy.

Why is it important to prevent neutropenia?

Your healthcare team has determined the chemotherapy and/or radiation dose and schedule to produce the best opportunity for success in your case. Neutropenia can lead to delays in treatment and dose reductions, which can make your chemotherapy less effective. Studies show that for certain types of cancer, chemotherapy produces the best long-term results when patients receive the full dose on time, every time. With good recovery of your white blood cell count, you may have a better chance of sticking to your treatment schedule. And most doctors agree that doing so is the first step to success.

What else should I know?

Be an educated consumer! Ask your healthcare team about your blood counts and record them in a log. Know the signs of infection and who to notify if you develop any. If you experience neutropenia, ask about using a growth factor. And teach those around you how to keep infection at bay.

Other resources

Blood counts log – print this log to keep track of your blood counts and treatments.

OncoLink Rx – learn about the medications you are receiving.

More Information

Neutropenia Tip Sheet: Here you will find helpful tips from our Oncology Nurse Educator about infection and cancer related neutropenia. You will find information that explains what neutropenia is, why it happens, how it is treated, and what you can do to prevent yourself from developing it.

Neutropenia Medications: Find out about medications which may be used to help infection and cancer related neutropenia or to shorten the duration of neutropenia in some cancer patients receiving chemotherapy and radiation therapy.

• Filgrastim (G-CSF, Neupogen®)
• Pegfilgrastim (Neulasta®)
• Sargramostim (GM-CSF, Leukine®)

More Information about Neutropenia: Includes the latest information about infection and cancer related neutropenia from Reuters News, The Abramson Cancer Center, the OncoLink Scientific coverage of infection and cancer related neutropenia related topics, special cancer related teaching guides, information about causes of infection and cancer related neutropenia and links to the National Cancer Institute, and other cancer resources.