Managing Side Effects of Treatment

It is by surmounting difficulties, not by sinking under them,that we discover our fortitude.

— Hannah Webster Foster

When undergoing treatment for cancer, especially chemotherapy and radiation therapy, there are a number of side effects or symptoms you may experience. When your doctor advises you of “possible” side effects, this does not mean that you will experience all of them. In fact, it is possible for you to undergo treatment with little to no side effects that disrupt your daily activities.

Be sure to report any symptoms or side effects to your doctor or nurse immediately after you begin to experience them. That way you will not have to continue to be in pain, feel sick to your stomach or tired for a long period of time. The sooner you talk with your doctor or nurse, the sooner they can begin to help you feel better.

In this section we address some of the more common side effects from cancer treatment. We do not cover each and every possible side effect or symptom. If you need information on a side effect we have not covered, try the Resources we have listed at the end of this section. And, as always, talk with your healthcare providers to get further information.

FATIGUE

What is fatigue?
Fatigue is a feeling of extreme tiredness, exhaustion or lack of energy. Fatigue can also make you feel worn out, weak, heavy or slow. It is the feeling that you don’t have the energy to do the simple things you usually do each day, like showering, cooking, running errands, taking care of others, working or doing light housework. Fatigue in people with cancer often is not improved by rest or sleep.

Why am I fatigued?
Fatigue is very common in people with cancer. There are a number of possible reasons for your reduced energy and increased fatigue.

Cancer treatments such as chemotherapy, radiation therapy, surgery and certain drugs can contribute to draining your energy. A tumor uses your energy for growth, which reduces the energy available to the rest of your body. Cancer cells destroyed during treatment release chemicals that may increase fatigue. Pain, infection and fever also draw energy from your body.

Side effects of treatment, such as nausea and vomiting, may worsen fatigue because you may not be able to get good nutrition. Radiation may contribute to fatigue because the body uses energy to repair damaged skin tissue. Also, a low red blood cell count (anemia) may result from cancer treatment. Since red blood cells are needed to carry oxygen throughout your body, this reduction in oxygen-carrying cells can contribute to your fatigue.

The extreme stress that people with cancer experience over a long period of time can deplete energy levels. In addition, researchers have found that about 40 to 60 percent of the cases of fatigue among medical patients are not caused by the disease or a physical reason. Normal emotional responses to dealing with cancer, such as sadness, depression, anxiety and fear, can all cause or worsen fatigue. All or any of these can decrease your energy and add to your fatigue.

The healing process also requires energy. This, too, can contribute to fatigue.

What can I do about fatigue?
The good news is that there are a number of things that you can do to help manage your fatigue.

• Plan to balance your activity and rest each day. Inadequate rest can be just as energy depleting as not enough activity. Napping can be helpful, but keep in mind that napping during the day may interfere with your ability to sleep through the night.
• Light to moderate exercise may be helpful. Studies are showing that light exercise on a regular basis may help people with cancer have more physical energy, improved appetite, better ability to function, improved outlook and sense of well being, and better ability to meet the challenges of cancer and cancer treatment. Talk about exercise with your health care provider.
• Practice energy conservation. Any changes in daily routine require the body to use more energy. Set priorities for activities in a day, and keep a reasonable schedule. Organize your work area to minimize trips. Avoid unnecessary standing and other energy drains. Take advantage of offers of help. Schedule important daily activities during times of less fatigue, and cancel unimportant activities that cause stress.
• Continue to do activities that you enjoy, if possible, such as walking, gardening, birdwatching, crafting or other hobbies.
• Practice healthy eating habits. Good nutrition can provide the fuel you need to promote and maintain energy levels. You may want to avoid fatty foods and large meals, as both can leave you feeling sluggish. Discuss diet and nutrition with your healthcare provider. It may be necessary to use medications to combat mouth sores, nausea and vomiting (possible side effects of chemotherapy) to ensure your ability to eat adequately.
• Let your doctor or nurse know if (or when) you are having difficulty with fatigue or other symptoms that are getting in the way of your usual activities. They are there to help you through the process.

HAIR LOSS

Will I definitely lose all my hair if I receive chemotherapy?
Understandably, this is a concern of a patient undergoing chemotherapy. Losing your hair is a visual cue to yourself and to others that you are sick. It can affect how you see yourself and how you feel others view you.
Each woman is different in how her body responds to different chemotherapy drugs. Some women may lose all their hair very quickly, while for others the process takes longer. Some women will experience only a “thinning out” of their hair and will not lose it all. Your doctor or nurse will be able to give you an idea of the likelihood of hair loss based on your individual treatment program.

How long does it take for the hair to fall out?
Again, each person is different. Depending on your treatment, you might see some hair loss anytime between 10 to 16 days after your first chemotherapy treatment. It may fall out more quickly or it may take a longer period of time.

What can I do about hair loss?
Losing one’s hair can be a stressful experience. We all want to look our best and feel good about our appearance. Losing your hair can affect your level of confidence and self-esteem. However, based on your own comfort level, there are several things you can do to cope with hair loss:

• Cut your hair short (or shorter) before you begin treatment. This is one of the easiest things you can do, especially if your hair is long. A shorter style will make your hair look thicker and fuller. If your hair only thins out, you may not need to do anything else. A shorter hairstyle can also help reduce the anxiety and trauma from having large amounts of hair fall out in a short amount of time.
• If you choose to wear wigs, try to find your wigs before you begin treatment. This will help you to match your current hairstyle and color, if you wish. If you are able, you may want to consider buying more than one wig either the same color and style or two different ones (for variety). Having more than one wig will allow you to have one to wear while the other is being cleaned and restyled. It is best to try on wigs after you have your hair cut short for a more accurate fit.
• Find a hairstylist who is skilled with wigs. This may be your very own hairstylist, which will save you from searching for someone to help you style your wig. If you get your wig through a mail-order catalog, be prepared for the wig to need some shaping, styling and, perhaps, even some cutting to suit your taste. Your doctor or nurse may have names of competent wig stylists or you might try asking someone in a support group who they got to style their wigs. Also, check with your doctor to see if your treatment center offers a “Look Good . . . Feel Better” program, sponsored by the American Cancer Society.
• Wear scarves, hats, turbans or other headcoverings, with or without your wigs. Or, you may decide that you don’t want to wear a wig or other headcoverings. It all depends on your own comfort level.
• Consider shaving your hair off. When your hair becomes patchy all over your head, sometimes the best thing you can do is get rid of it. Many women report feeling better once they take control and get rid of the hair remnants. If you do this, be sure to exercise great care if you are doing it yourself. An electric razor is probably the best method for shaving your head. Before you do, you may want to consult with your doctor or nurse. It’s possible they, or a friend, may be willing to do it for you.

Where can I find wigs and stylists, hats and other headcoverings, and how do I pay for them?
To find a local, mail order, or Internet wig store, wig stylist or stores that have scarves, hats and turbans, check the Suppliers of Breast Cancer Products and Services on page 217, or ask your healthcare provider for resources in your community. Some wig stores or hairstylists offer discounts to cancer patients needing wigs or wig styling. Your local hospital or cancer center or the local American Cancer Society office may have a free wig bank or loan closet, where you can borrow a wig rather than buy one. Also, some health insurance policies cover the cost of a hairpiece needed because of cancer treatment. It is also a tax-deductible expense. Check your policy, and ask your doctor for a “prescription.”

How long will it take for my hair to grow back?
Generally, your hair will begin to grow back once you have completed treatment. Sometimes it may start growing before you have finished treatment. Sometimes hair may grow back a different color or texture. Since all women are different, there is no way to tell how fast your hair will grow back.

Some tips for taking care of your head and hair during treatment:

• Use a mild shampoo.
• Use a soft hair brush or wide-tooth comb.
• If you use a hairdryer, use low heat.
• Use sunscreen, a hat or scarf to protect your scalp.
• Avoid brush rollers to set your hair.
• Avoid dying, perming or relaxing your hair.

NUTRITION AND PROBLEMS WITH EATING DURING TREATMENT (Nausea, Vomiting, Mouth Sores)

You may not (and should not expect to) have these symptoms; however, you should be aware that they are possible. Your doctor or nurse can help you to recognize early signs or symptoms and can give you medications to prevent or relieve them. New drugs have made these side effects far less common; and, when they do occur, they are much less severe. Different drugs work for different people, and you may need more than one drug to get relief. Do not give up. Continue to work with your doctor or nurse to find the drug or drugs that work best for you.

Be sure to tell your healthcare team if you are very nauseated or have vomited for more than a day, or if your vomiting is so bad that you cannot keep liquids down.

Your diet and nutrition are very important during cancer treatment. Here are a few reasons why:

• A healthy diet helps keep up your strength, fights fatigue and promotes rebuilding of the healthy tissue that cancer treatment has destroyed.
• A healthy diet helps maintain your nutrient and energy levels, protecting your natural defenses for fighting infection. You need this now because cancer patients are at higher risk of getting infections due to the effects of cancer treatment.

What can I do if I have nausea and vomiting?
Here are some tips to eating well during your cancer treatment:

• Eat small meals throughout the day rather than two or three regular meals. Your stomach won’t feel as full, and smaller meals are generally better tolerated.
• Eat and drink slowly, and chew your food well for easier digestion.
• Pay attention to your body signals. If one particular food or flavor makes you sick to your stomach, avoid it and eat more of the foods that agree with you.
• If nausea is a problem in the morning, try eating dry foods like cereal, toast or crackers before getting up. (Do not try this if you have mouth or throat sores or if you are troubled by a lack of saliva or dry mouth).
• Try these foods–toast and crackers, yogurt, sherbet, pretzels, angel food cake, oatmeal, chicken (skinned, baked or broiled), soft/bland fruits and vegetables, clear liquids and ice chips. Carbohydrates or bland foods can sometimes help reduce nausea.
• Avoid fatty, greasy or fried foods. Sweets such as candy, cookies, some cakes, spicy or hot or strong-smelling foods can make your stomach more upset.
• Avoid warm, stuffy rooms with strong odors.
• Breathe deeply and slowly when you feel nauseated.
• Drink liquids at least an hour before or after mealtime, instead of with your meals. Drink frequently and drink small amounts. Try cool, clear, unsweetened fruit juices, such as apple or grape juice or light-colored sodas such as ginger ale that have lost their fizz and do not have caffeine.
• Eat foods at room temperature or cooler if hot foods or smells add to your nausea.
• You may want to avoid your favorite foods when you are nauseated, or they may not be your favorite foods for long.
• Rest after meals, but do not lie flat. Sitting for an hour after meals allows your stomach time to empty.
• Wear loose, comfortable clothing. Tight clothing can make you feel more full and restricted.
• Keep track of when your nausea occurs and what causes or aggravates it. Try to make changes in your diet or schedule to allow for this.
• Avoid eating one to two hours before treatment, especially if your nausea occurs during treatment.
• Suck on mints or tart candies. (Do not use tart candies if you have mouth or throat sores.)
• Distract yourself by chatting with friends or family members, listening to music, reading or watching a movie or television show.

Why is my mouth sore, and what can I do about it?
Mouth soreness can result from chemotherapy treatment. Chemotherapy drugs act upon rapidly producing cells in your body. The drugs affect more than just the cancer cells. Your skin, hair, nails, lining of the stomach, mucous membranes (tongue, throat and inside your mouth) are often damaged by chemotherapy drugs. This can cause hair loss (discussed earlier), skin changes, nausea, soreness in your mouth, and other problems.

Mouth soreness should be reported promptly to your healthcare team. There are medications that can help. Good oral care is very important during cancer treatment. Not treating mouth soreness right away can interfere with your ability to eat and can lead to an infection in your mouth. You should not dismiss this as a minor problem if it bothers you at all.

Will the treatments do anything to my teeth?
Some people do have problems with their teeth and gums during and after radiation and chemotherapy. It is a good idea to check with your dentist before starting treatment. He or she might have some suggestions about how to prevent dental problems that may be caused by treatments for cancer. Your dentist also may suggest that you have any teeth cleaning, dental work or cavity-filling done before treatment begins.

PAIN (from Cancer or Treatment)

Pain is a personal and individual experience. It is not defined or felt in the same way by any two people. Your previous life experience with pain may influence how you deal with any pain you experience throughout the diagnosis and treatment of your breast cancer.

Should I be experiencing pain from the cancer or treatment?
Not all patients have to deal with pain, but more often than not, it is a problem that many patients do not discuss with their doctors. For this reason, sometimes pain symptoms go untreated. Regardless of the degree of pain you experience, you have the right to be comfortable at all times and to have help to reduce or eliminate your pain.
Your first experience with discomfort may follow your breast biopsy. You may experience pain and discomfort again following surgery. Pain that goes unrelieved can interfere with your activity level and your ability to sleep. It can put you under undue stress, contribute to fatigue, and delay healing. Your doctor or healthcare provider should work with you to obtain an acceptable comfort level.

How can I manage my pain?
First, you should not have to suffer through your pain. Misunderstandings about pain often cause people to not get enough relief from their pain. You can take an active role in managing your pain in a number of ways:

• Tell your doctor or nurse when you have pain. Pain often occurs in cycles. The earlier you report it and seek treatment, the earlier the cycle can be broken.
• Describe your pain in specific terms–such as throbbing, stabbing, aching, burning, cramping, pinching, squeezing, tingling or twitching. This will help your doctor help you get relief from the pain.
• Learn to rate your pain on a scale of 0 to 10, with 0 = no pain and 10 = the worst pain you could imagine. This helps your healthcare provider or caregiver understand your level of pain, to determine what may help achieve relief and to track when relief is achieved and maintained. Keeping a pain diary may also be helpful. This could include when pain occurs, what kind of pain, rating of pain and possible activities or events which may relate to the pain.
• Describe anything that helps relieve your pain. This will provide a better understanding of your pain. In addition to pain medication, individuals have found certain body positions, ice or warm compresses, massage, meditation and acupuncture have helped them achieve pain relief. You might even try some relaxation techniques. Tell your doctor or nurse what works for you.
• Do not hesitate to discuss your past experiences, fears or concerns about pain relief with your doctor or healthcare provider.
• If you are taking pain medications, and you have persistent pain, take your pain medication on a regular schedule. Do not skip doses of your pain medication. If you wait to take pain medication until you feel pain, it is harder to control.
• If you are in pain, and your doctor has no further suggestions, ask to see a pain specialist or have your doctor consult with a pain specialist on your behalf.

Peripheral Neuropathy (Nerve Pain or Weakness)

What is peripheral neuropathy?
Sometimes anti-cancer drugs can cause problems with your body’s nerves. An example of a condition affecting the nervous system is peripheral neuropathy. It is caused by injury to peripheral nerves (those outside of the brain and spinal cord). They are found throughout the body, but peripheral neuropathy is most often limited to peripheral nerves in the fingers, hands, arms, toes, feet and legs.

The symptoms of peripheral neuropathy may include tingling, “pins and needles,” cold, prickling, and burning sensations to numbness and an unpleasant feeling when touching or being touched. Or, it may feel like muscle cramps, heaviness or weakness, and can affect muscle strength coordination.

What causes peripheral neuropathy?
The most commonly used chemotherapy drugs that cause peripheral neuropathy are cisplatin, Taxol, vincristine and vinblastine. Peripheral neuropathy can be caused by several conditions in addition to chemotherapy. If you have peripheral neuropathy before you start chemotherapy, it may begin sooner or be more severe during chemotherapy.

What can I do if I have peripheral neuropathy?
First, be sure to tell your doctor or nurse if you are having symptoms. They can suggest management strategies and give you advice about the condition. Some other coping strategies include:

• If your fingers are numb, be careful about grasping objects that are sharp, hot, or otherwise dangerous.
• If your sense of balance or muscle strength is affected, avoid falls by moving carefully, using handrails on stairs, and using bath mats in the tub or shower. A cane can also be helpful.
• Wear shoes with rubber or non-skid soles.
• Ask your doctor for pain medication, if necessary.

If you already have symptoms of peripheral neuropathy due to another condition, be sure to tell your doctor or nurse before you start chemotherapy.

Many of the symptoms of nerve effects can be treated. Medications, physical therapy, exercise, massage, and a proper diet all can be helpful. See our Resources at the end of this section for organizations and web sites that have more information and tips about dealing with nerve side effects and peripheral neuropathy.

Is peripheral neuropathy permanent?
The peripheral nervous system can repair itself, particularly if the cause of damage is removed. Recovery may be slow, but after you stop chemotherapy, your condition should get better.

Material for this section was gathered from Chemotherapy and You from the National Cancer Institute (800.4.CANCER or www.cancer.gov) and other publications.

RESOURCES

Organizations

American Cancer Society (ACS)
800.ACS.2345 or 866.228.4327 (TTY)
www.cancer.org
Provides information and services for all forms of cancer, diagnosis, treatment and many other topics. Programs include: Look Good . . . Feel Better (wig and cosmetic help) at local hospitals.

American Institute for Cancer Research (AICR)
202.328.7744 or 800.843.8114
www.aicr.org
Provides a wide range of free educational publications about nutrition, including tips about nutrition and cancer and offers many healthy recipes.

American Society of Clinical Oncology
703.299.0150
www.asco.org
A resource for oncologists and patients living with cancer. The People Living With Cancer web site (www.plwc.org) has a section about side effects.

Buddy Kemp Caring House (Charlotte, NC)
704.384.5223
www2.novanthealth.org/buddykemp
Provides a home-like environment for emotional support away from the hospital setting. All services are free and available to anyone.

CancerCare
212.221.3300 or 800.813.HOPE (4673)
www.cancercare.org
Provides free emotional support, information and practical help. Staffed by trained oncology social workers. Publishes “A Helping Hand,” a free resource guide for people with cancer. Has much information and advice about coping with cancer and chemotherapy side effects.

Cornucopia House Cancer Support Center (Chapel Hill, NC)
919.401.9333
www.cornucopiahouse.org
Offers education, companionship and support to help people cope with cancer. Services free to people with cancer, family and friends at any stage of their treatment, or survivorship. Often has nutrition and food classes.

Look Good . . . Feel Better
800.395.LOOK (5665)
www.lookgoodfeelbetter.org
A free, national public service program to help female cancer patients with appearance and self-image during cancer treatment. Call American Cancer Society at 800.ACS.2345 to find nearest program in your area, or call the hotline above for information and referrals. Spanish speakers available.

National Cancer Institute’s Cancer Information Service
800.4.CANCER or 800.332.8615 (TTY)
www.cancer.gov
One of the best resources available for cancer patients, this government organization provides the toll-free hotline above in English and Spanish for any questions about any type of cancer. Offers much information and advice about cancer treatments and side effects.

National Comprehensive Cancer Network
215.728.4788 or 888.909.6226
www.nccn.org
Publishes the following breast cancer treatment guidelines with the American Cancer Society: “Cancer Pain,” “Cancer-Related Fatigue,” “Fever and Neutropenia” and “Nausea and Vomiting”.

The Neuropathy Association
800.247.6968
www.neuropathy.org
A public nonprofit organization established by people with neuropathy, their families and friends to provide support and education. Free registration required on the web site to access information and support resources.

North Carolina Cancer Pain Initiative (Raleigh, NC)
919.834.8463
www.ncpain.info
Clearinghouse for information about pain. Organization tries to link patients and providers with information about pain management. Call to order free brochure, “Managing Pain When You Have Cancer.”

Office of Dietary Supplements at the National Institutes of Health
301.435.2920
dietary-supplements.info.nih.gov
Has the latest scientific information about supplements. Can search the web site for journal articles.

The Wellness Community
202.659.9709 or toll free 888.793.WELL
www.thewellnesscommunity.org
Nonprofit organization provides online support groups and education about cancer. Offers the educational kit, “Frankly Speaking About Cancer Treatment: Take Control of Side Effects with Medicine, Mind and Body” (2002).

Books and More

American Cancer Society’s Healthy Eating Cookbook (2003). Includes hundreds of recipes, healthy eating tips, cooking ideas, and healthy food substitutions. Call 800.ACS.2345 or see www.cancer.org.

Cancer Doesn’t Have to Hurt: How to Conquer the Pain Caused by Cancer and Cancer Treatment, by Pamela J. Haylock and Carol P. Curtiss (1997). Explains cancer pain and how to manage it, including medical options and alternative therapies.

The Cancer Recovery Eating Plan: The Right Foods to Help Fuel Your Recovery, by Daniel W. Nixon, MD (1996). Useful guide for what to eat after a cancer diagnosis, with a three-month eating plan and recipes.

Cancer Survival Cookbook, by Donna L. Weihofen, RD, MS, with Christina Marino, MD, MPH (2002). Recipes and recommendations to help people during and after cancer treatment, including advice on overcoming specific problems such as nausea and appetite loss.

Guide to Pain Control: Powerful Methods to Overcome Cancer Pain, by the American Cancer Society (2001). Comprehensive resource on pain, treatment options and other issues. Call 800.ACS.2345 or see www.cancer.org.

Managing the Side Effects of Chemotherapy and Radiation Therapy, by Marylin J. Dodd, RN, PhD, FAAN (2001). Easy-to-read book describes possible side effects and symptoms of chemotherapy and radiation therapy, and offers suggestions for managing each side effect.

What to Eat If You Have Cancer: A Guide to Adding Nutritional Therapy to Your Treatment Plan, by Maureen Keane, MS, and Daniella Chace, MS (1996). Explains how nutrition affects physical function and gives suggestions for nutritional supplements, food preparation, and managing side effects of cancer treatment.

Web Sites

American Alliance of Cancer Pain
www.aacpi.org
A network of state-based Pain Initiative organizations to remove barriers to pain relief. Provides resources and guidance and much more.

American Pain Foundation
www.painfoundation.org
An online resource for people with pain, their families, friends, caregivers and the general public. This site is devoted to patient information and advocacy, and provides many links to additional resources.

Cancer-Fatigue Discussion List
www.acor.org
This public online support group provides information and community to its members.

Cancer-Pain Discussion List
www.acor.org
This public online support group provides information and community to its members.

CancerSymptoms.org from the Oncology Nursing Society
www.cancersymptoms.org
Devoted to the management of fatigue, eating problems, pain, depression, peripheral neuropathy and other side effects. Also in Spanish.

CyberDiet.com
www.cyberdiet.com
Use the “Fast Food Quest,” to get the nutritional, fat and calorie content of fast food chains.

The International Center for the Control of Pain in Children and Adults
www.nursing.uiowa.edu/sites/PedsPain
Has much information about pain of all kinds, assessment, treatment and more. Includes a section on home care and hospice, and a Bill of Rights for Cancer Patients.

Oncolink’s Coping with Cancer Pages
www.oncolink.org/coping
This site includes information about nutrition, side effects, sexuality, and other topics relating to cancer.

Pain-Caregivers Discussion List
www.acor.org
A public online support group for caregivers of patients suffering from cancer pain.

Recipes for Breast Cancer Survivors and Their Friends
www.silcom.com/~noster/bcrecs.html
Contains many recipes, healthy and otherwise, from those with breast cancer or whose lives have been affected by breast cancer.