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Cancer-Related Fatigue and Anemia
What is cancer-related fatigue?

Fatigue is the feeling of being tired physically, mentally, and emotionally. It means having less energy to do the things you normally do or want to do. Cancer-related fatigue is defined as a persistent and subjective sense of tiredness or exhaustion that can occur with cancer or cancer treatment. It can persist over time and can interfere with usual activities. This fatigue is different from the fatigue of everyday life, which is usually temporary and gets better with rest. Cancer-related fatigue is more severe and more distressing. Rest does not always make it go away. For some people, this kind of fatigue can be even more distressing than pain, nausea, vomiting, or depression. Cancer-related fatigue can:

  • vary in its unpleasantness, severity, and amount of time that it is present 
  • be overwhelming and hinder your ability to feel well
  • make even being with your friends and family difficult 
  • decrease the ability to continue your normal activities, including going to work 
  • make it difficult to follow your cancer treatment plan

Cancer patients say fatigue is the most distressing side effect of cancer and its treatment and one that drastically affects their quality of life. People with cancer-related fatigue describe it as feeling tired, weak, exhausted, weary, worn-out, or slow; having no energy; and being unable to concentrate. They also talk about having heavy arms and legs; having little motivation to do anything; being unable to sleep or sleeping too much; or having feelings of sadness, irritability, or frustration. Patients rarely describe their symptom as "fatigue" unless their health care team suggests it.

From Susan, a cancer survivor: "Fatigue means being extremely tired; not having any energy; wanting to lie down and sleep. It also means I don’t have any desire to expend any energy. I do not get relief from sleep. I just take naps here and there. I'm unable to do for myself. Sometimes I struggle to get up to get something, or do something that actually takes very little effort. I have a lot of frustrations and anger over not feeling like doing ordinary things."

Cancer-related fatigue is very common.

Cancer-related fatigue is the most common side effect of cancer and its treatment. Research suggests that about 90% of cancer patients receiving treatments such as radiation therapy, chemotherapy, immunotherapy, or bone marrow transplant have fatigue. Thirty percent to 75% of cancer survivors have reported fatigue that continues for months or years after completing active treatment. Cancer survivors or patients who are no longer actively being treated must still be watched for fatigue because it can exist after treatment. Even though fatigue is a very distressing symptom, doctors and nurses seldom focus on it, and patients and caregivers rarely report it. Although it may be difficult to talk about, fatigue is normal and common for people with cancer. There are things that can be done to help if the health care team knows about the symptom.

Describing the fatigue

Managing fatigue is an important part of care for you and your family. In fact, current cancer care stresses that symptom management is a patient's right.

Before starting cancer therapy, the health care team must know about your level of fatigue, in other words, how severe your fatigue is. Only you know if you have fatigue and how severe it is. No laboratory tests or x-rays can diagnose or determine the level of fatigue. The best measure of fatigue comes from your own report of your level of fatigue to the health care team.

You can describe your level of fatigue as none, mild, moderate, or severe. Or you can use a scale of 0 to 10, where a 0 means no fatigue, and a 10 means the worst fatigue imaginable. Talk to your doctor or nurse about your fatigue.

How is fatigue assessed?

If you have moderate (4 to 6) to severe (7 to 10) fatigue, your doctor may ask you to give them as much information as you can about your fatigue. You may be asked such questions as:

  • When did the fatigue first start? 
  • When did you first realize that it is an unusual type of fatigue for you? 
  • How has it become worse over the course of your treatment or since your diagnosis? 
  • What helps relieve your fatigue? What makes your fatigue worse? 
  • How has the fatigue affected your activities of daily living or the activities that give meaning and enjoyment to your life?

In planning how to treat your fatigue, your doctor will consider your cancer, the type and length of treatment, their potential to cause fatigue, and your response to treatment.

What causes cancer-related fatigue?

Fatigue is common with chemotherapy, radiation therapy, bone marrow transplant, and immunotherapy. Chemotherapy, bone marrow transplant, and radiation therapy can destroy rapidly dividing healthy cells, especially the blood-making cells in the bone marrow, causing fatigue. Too few red blood cells (called anemia) means too little energy to meet the body’s needs. Without enough energy the patient feels tired. Rapid cell death also leads to a build-up of cell by-products. This increases the amount of energy the body needs to repair damaged tissue. Immunotherapy (a treatment that uses certain parts of the immune system to fight disease) can cause side effects that can contribute to fatigue, such as flu-like symptoms, mental fatigue, and trouble thinking.

The cancer itself can cause fatigue directly or indirectly by spreading to the bone marrow, causing anemia (low red blood cell count), and by forming toxic substances in the body that interfere with normal cell functions.

You might ask your doctor some of the following questions as you begin your cancer treatment to help you know about fatigue and what can be done:

  • Will the cancer therapy that I am receiving cause fatigue? 
  • How severe will my fatigue be? 
  • Are there effective treatments to control my fatigue or make it better? 
  • How will you decide which treatment I will receive? 
  • What can be done if the treatment does not make my fatigue better? 
  • What are the likely side effects of the proposed treatments? 
  • What other health care professionals can help manage my fatigue? 
  • Is my fatigue caused by anemia? If so, how will it be treated?

What are some conditions that can contribute to fatigue?

Fatigue is different for every cancer patient. Although many treatment-related and disease-related factors may contribute to being fatigued, exactly what causes cancer-related fatigue is still unknown.

There are some conditions that are often present with fatigue, so they should be checked. Managing these conditions can greatly help reduce the fatigue. These conditions are:

  • anemia 
  • pain 
  • emotional distress (including depression and anxiety) 
  • sleep problems 
  • nutrition problems 
  • decreased activity level 
  • other medical conditions (such as low thyroid gland function, infections, and heart, lung, kidney, or nervous system disease)

Anemia

Many patients develop anemia as a result of chemotherapy and this causes them to become fatigued. Anemia occurs when the blood has too little hemoglobin, the part of the red blood cell (RBC) that carries the oxygen needed by your body. Doctors often define anemia as a blood hemoglobin (Hb) level of less than 12 g/dL, but many people will not feel much different until the hemoglobin level falls below 11 g/dL. Symptoms of anemia will begin to appear as the hemoglobin decreases. These symptoms can include shortness of breath, difficulty breathing on exertion, and fatigue. These symptoms occur because the body tissues aren’t getting enough oxygen. Anemia can be caused by a number of different factors:

  • cancer 
  • cancer treatment 
  • persistent bleeding 
  • lack of specific vitamins or minerals in the diet 
  • major organ dysfunction (including severe heart, lung, kidney, or liver disease) 
  • destruction of the RBCs 
  • hereditary disorders, such as sickle cell disease 
  • a combination of these factors

Some of these causes may have nothing to do with your cancer. If anemia is the cause of the fatigue, treating it may decrease the level of fatigue.

Anemia is diagnosed with a blood test called a complete blood count, or CBC. A careful medical history, physical exam, other blood tests such as blood iron and vitamin levels, and a bone marrow test may also help to find the cause of the anemia.

The goal of treatment for anemia is to treat the cause of the anemia and to improve the hemoglobin level so that the symptoms will go away. Treatments for anemia include eating nutrient-rich foods, taking iron and folic acid supplements, and stopping any bleeding. A transfusion of red blood cells may be given to treat anemia, especially in cases where the hemoglobin level needs to be raised quickly.

Another way to treat anemia is by using drugs such as epoetin (e-poy-ee-tin) or darbepoetin (dar-beh-poy-ee-tin). Erythropoeitin (e-rith-ro-poy-ee-tin) is a natural substance that is normally produced by the kidneys. This substance helps the body make its own new red blood cells. Cancer treatment can impair the ability of the kidneys to make erythropoietin, causing decreased numbers of red blood cells and anemia. Epoetin and darbepoetin can be used to work in place of the body’s natural erythropoietin and help the bone marrow make red blood cells. However, several studies have found a higher chance of serious or life-threatening side effects using these drugs. They should only be used for patients on active treatment and after careful consideration of their risks and benefits.

Still, studies have shown that the use of these drugs in patients getting chemotherapy resulted in an increase in their hemoglobin levels and a reduced need for blood transfusions. Although the evidence was not quite as strong, an equally important finding in these studies was the effect of anemia on the patients’ quality of life. Patients with anemia had a lower quality of life than they had when anemia was not present. When the anemia was corrected, the patient’s quality of life often improved. Some studies have now begun looking at whether or not correcting anemia during cancer treatment can help people to live longer. More research is needed to find out if the use of erythropoietin is effective for long-term cancer survival.

Pain

Chronic cancer pain can cause reduced activity, decreased appetite, sleep problems, and depression, all of which contribute to fatigue. For more information about treating cancer-related pain, talk to your doctor or nurse. You may also refer to the online Cancer Pain Treatment Guidelines for Patients or request a printed copy from the American Cancer Society.

Emotional distress

Distress refers to the unpleasant emotions that occur in anyone diagnosed with cancer. This distress can be a feeling of sadness about the loss of good health. This is a normal feeling. Sometimes, though, the distress becomes so great that it causes physical symptoms. Depression and anxiety are common examples of distress that can cause the physical symptom of fatigue. For more information, Distress Treatment Guidelines for Patients are available online or you can request a printed copy from the American Cancer Society.

Sleep problems

If you wake up often during the night or have trouble falling asleep, you are probably not getting the rest you need. This change in your sleep can result in fatigue. Tell your doctor or nurse about your sleeping problems. They will try to find out why you are having trouble sleeping in order to plan the best treatment for this problem.

Medicines

Many medicines can cause symptoms of fatigue and problems with thinking. The most common are analgesics (pain-relieving drugs), sleep medicines, anti-depressants, and anti-seizure medicines. Although the degree of sleepiness varies among patients, taking multiple drugs with numerous side effects may worsen fatigue. It is important to tell your health care team about all medicines you are taking. Keeping a journal may help you keep track of your medicines and symptoms.

Other medical problems

Many people have other medical problems or illnesses that are not related to cancer, but may add to fatigue. These illnesses should be identified and treated. Examples of other medical conditions that may be present include:

  • heart problems, such as congestive heart failure 
  • lung problems, such as emphysema or shortness of breath 
  • kidney problems, such as kidney failure 
  • nervous system problems, such as seizures or Alzheimer’s disease 
  • infections, such as pneumonia or viral illnesses 
  • low thyroid gland function

Low functioning of the thyroid gland is very common in people in the United States, so anyone with the symptom of fatigue should be evaluated for this condition. Blood tests are done to find out the amount of thyroid hormone present in the blood. If the level of thyroid hormone is low, treatment is available to replace the thyroid hormone needed by the body. In some conditions, such as head and neck cancer, when the patient's neck is treated with radiation therapy, low thyroid function may develop without being suspected.

Poor nutrition

The body needs protein, carbohydrates, fats, vitamins, minerals, and water to do its work. In people with cancer, certain changes in nutrition can affect fatigue. These changes include the ability to process nutrients; increased energy requirements; and decreased intake of food, fluids, and certain minerals. These changes can result from:

  • changes in metabolism (the body’s ability to break down products) 
  • competition by the tumor for nutrients 
  • poor appetite 
  • nausea/vomiting 
  • diarrhea or bowel obstruction

You may ask to be referred to a registered dietitian who can help you learn how to best meet your nutritional needs under these circumstances.

Inactivity

The combination of cancer treatment and reduced physical activity often decreases your capacity for physical performance. As a result, you must use greater effort and more energy to do your usual activities. This leads to fatigue. Physical exercise builds up your energy levels, leading to reduced effort in doing your usual activities and less fatigue. A careful work-up by a physical therapist can help plan the right exercise program for you.

Treating fatigue

Symptoms of fatigue are often caused by more than one problem. Treating a specific problem, such as anemia, may make you feel better, but other things may still need to be done. That is why many different approaches are considered. These approaches may or may not include medicines. Treating cancer-related fatigue often involves many health professionals, including doctors, nurses, social workers, physical therapists, nutritionists, and a number of others. Education and counseling are part of the treatment and help the patient learn how to save energy, reduce stress, and use distraction to think about things other than the fatigue.

If the cause of fatigue is known, treatment will be directed to the cause. For example, if anemia is thought to add to symptoms of fatigue, the anemia will be treated. In another patient, treatment may include correcting fluid and mineral imbalances. A program of regular exercise, managing your stress, and learning ways to deal with anxiety and depression seem to have the greatest benefit in managing fatigue. However, treating sleep problems and correcting nutrition problems also seem to decrease fatigue.

Another treatment, called restorative treatment, addresses one specific type of fatigue called attentional fatigue. This type of fatigue decreases your ability to concentrate or to focus your attention. Examples of attention-restoring activities include walking on a beach, sitting in a park, gardening, doing volunteer activities not related to the illness, and having quiet time.

Patient and family education

Education is an important part of treating fatigue. By understanding fatigue, you can cope better and reduce your distress. Oftentimes, a family member who participates in the education with you can help you talk to your health care team about your fatigue. The best approach is to learn about fatigue before you have it.

Here is a list of things you can do for yourself in an effort to manage and reduce your fatigue:

  • List your activities according to how important they are to you when you have the most energy. 
  • Ask for help and have other people do tasks for you when possible. 
  • Place things that you often use within easy reach to save your energy. 
  • Set a structured daily routine. 
  • Use methods to reduce stress, such as deep breathing, imagery, meditation, prayer, talking with others, reading, listening too music, painting, or any other activity that gives you pleasure. 
  • Keep a journal. 
  • Balance rest and activities. Too much bed rest promotes weakness. Try to avoid it. Schedule activities so that you have time for plenty of rest that does not interfere with nighttime sleep. Shorter rest periods are reported to be better than one long one. 
  • Talk to your doctor about how to manage your pain, nausea, and depression. 
  • Maintain as normal a level of activity as possible. Discuss physical exercise with your doctor before you start an exercise program. Get fresh air, if possible. 
  • Unless you are given other instructions, eat a balanced diet that includes protein (meat, milk, eggs, and beans) and drink about 2 liters (8 to 10 glasses) of water a day.

Below is a list of some symptoms of fatigue that you and your family can watch for. If you experience these kinds of symptoms you should speak to your doctor about them soon as possible.

  • Your fatigue does not get better, keeps coming back, or becomes severe. 
  • You are more tired than usual during or after an activity. 
  • You are feeling tired and it is not related to an activity. 
  • Your fatigue is not relieved by rest or sleep. 
  • You become confused or cannot concentrate. 
  • You are unable to get out of bed for more than 24 hours. 
  • Your fatigue disrupts your work, social life, or daily routine.

Complementary and alternative therapies

Complementary and alternative medicines are different kinds of health care practices and products that are not part of your usual medical treatment. They may include herbs, special supplements, acupuncture, massage, and a host of other types of treatment. You may hear about different treatments from your family and friends. People may offer all sorts of suggestions, such as vitamins, herbs, stress reduction, and more, as a treatment for your cancer or to help you feel better.

The American Cancer Society defines complementary medicine or methods as those that are used along with your regular medical care. If these treatments are carefully managed, they may add to your comfort and well-being. Some of these methods have been tested, while others have not. Some have shown possible benefit, while others have not proven helpful. Some of these treatments have harmful effects too.

Alternative medicines are defined as those that are used instead of regular medical care. Some of them have been proven harmful, but are still promoted as "cures." If you choose these alternatives, it is important to know that even the methods that do not cause harm may reduce your chance of fighting your cancer by delaying or replacing regular cancer treatment.

There is a great deal of interest today in complementary and alternative treatments for cancer. Many are being studied to find out if they are helpful to people with cancer. Before changing your treatment or adding any of these methods, it is best to discuss this openly with your doctor or nurse. Some methods can be safely used along with standard medical treatment. Others, however, can interfere with standard treatment or cause serious side effects. That is why it’s important to talk with your doctor. More information about complementary and alternative methods of cancer treatment is available through the American Cancer Society’s toll-free number at 1-800-ACS-2345 or on our Web site at www.cancer.org.

What is a clinical trial?

All drugs used to treat cancer or other diseases must undergo clinical trials in order to determine their safety and effectiveness before the Food and Drug Administration (FDA) can approve them for use. Treatments used in clinical trials are often found to have real benefits. Researchers conduct studies of new treatments to answer the following questions:

  • Is the treatment helpful? 
  • How does this new type of treatment work? 
  • Does it work better than other treatments already available? 
  • What side effects does the treatment cause? 
  • Do the benefits outweigh the risks, including side effects? 
  • Which patients will the treatment most likely help?

During cancer treatment, the doctor may suggest taking part in a clinical trial. Scientists conduct clinical trials only when they believe that the treatment being studied may be better than other treatments.

All patients in a clinical trial are closely watched by a team of experts to monitor their progress very carefully. The study is done to find out if the new treatment will work better than the standard treatment and if the side effects are worse or less. The new treatment may have some side effects, which the doctor will discuss with the patient before the clinical trial is started.

Should I enter a clinical trial?

Taking part in any clinical trial is completely voluntary. Doctors and nurses explain the study in detail and provide a consent form to read and sign. This form states that the patient understands the risks and wants to participate. Even after signing the form and the trial begins, the patient may leave the study at any time, for any reason.

Taking part in the study will not keep anyone from getting other medical care they may need. Patients should always check with their health insurance company to find out whether it will cover the costs of taking part in a clinical trial.

Participating in a clinical trial evaluating new, improved methods for treating cancer may help the patient directly, and it may help other people with cancer in the future. For these reasons, members of the National Comprehensive Cancer Network and the American Cancer Society encourage participation in clinical trials.

How can I find out more about clinical trials that might be right for me?

The American Cancer Society offers a clinical trials matching service that will help you find a clinical trials that is right for you. You can reach this service at 1-800-303-5691 or our Web site http://clinicaltrials.cancer.org. Based on the information you give about your cancer type, stage, and previous treatments, this service compiles a list of clinical trials that match your medical needs. The service will also ask where you live and whether you are willing to travel so that it can look for a treatment center you can get to.

You can also get a list of current clinical trials by calling the National Cancer Institute’s Cancer Information Service toll free at 1-800-4-CANCER (1-800-422-6237) or by visiting the NCI clinical trials Web site at http://www.cancer.gov/clinical_trials/.

More information about clinical trials is available through the American Cancer Society’s toll-free number at 1-800-ACS-2345 or on our Web site at www.cancer.org.

For more information

For more information on treatment options, get the booklet, Cancer-Related Fatigue and Anemia: Treatment Guidelines for Patients. This booklet provides specific treatment guidelines for fatigue and anemia and is based on the professional version developed by the National Comprehensive Cancer Network (NCCN). NCCN is a network of more than 21 of the nation's leading cancer centers which develops cancer treatment guidelines for doctors to use when treating patients.

The American Cancer Society collaborates with the NCCN to produce a version of some of these treatment guidelines, written specifically for patients and their families. These less-technical versions are available on both the NCCN Web site (http://www.nccn.org) and the American Cancer Society Web site (www.cancer.org).

You can also get a print version of the booklet and any other cancer information you may need by calling the American Cancer Society at 1-800-ACS-2345, any time, any day.

Additional resources

More information from your American Cancer Society

We have selected some related information that may also be helpful to you. These materials may be viewed on our Web site or ordered from our toll-free number, 1-800-ACS-2345.

The following book is available from the American Cancer Society. Call us at 1-800-ACS-2345 to ask about costs or to place your order.

Caregiving: A Step-By-Step Resource for Caring for the Person With Cancer at Home

National organizations and Web sites*

In addition to the American Cancer Society, other sources of patient information and support include:

National Cancer Institute
Telephone: 1-800-422-6237 (1-800-4-CANCER)
TTY: 1-800-332-8615
Web site: http://www.cancer.gov

*Inclusion on this list does not imply endorsement by the American Cancer Society.

No matter who you are, we can help. Contact us anytime, day or night, for information and support. Call us at 1-800-ACS-2345 or visit www.cancer.org.

References

National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines in Oncology. Cancer-Related Fatigue – V.4.2007. Available at: http://www.nccn.org/professionals/physician_gls/PDF/fatigue.pdf. Accessed December 5, 2007.

Revised: 12/21/2007

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