Fatigue. No. 3 in a series providing the latest information on blood cancers. IRC

Transcription

1 Fatigue No. 3 in a series providing the latest information on blood cancers. What is fatigue? Fatigue is described as an unusual tiredness that interferes with daily life and cannot be overcome by resting or a good night's sleep. It affects many patients with leukemia, Hodgkin and non-hodgkin lymphoma, and myeloma. The National Comprehensive Cancer Network states that people with cancer-related fatigue may feel its effects for days, weeks or months. It is an important issue that can have a major impact on quality of life, with physical, emotional and economic consequences. Fortunately, there is a growing awareness about fatigue in both the medical and research communities, and options for patients to help minimize or relieve this symptom. With fatigue, patients experience exhaustion or lack of energy for their usual activities. Difficulty talking, walking, concentrating, making decisions, and feelings of irritability, may all signal fatigue. Compared to normal fatigue that healthy people experience from time to time, cancer-related fatigue is more severe, more distressing and less likely to be relieved by rest. The reasons so many people with cancer feel fatigue are under study. However, there are steps that people can take to feel better. Medical treatment, moderate exercise, good nutrition, stress management, and certain lifestyle changes, help many patients to feel more energetic or better able to deal with fatigue. This fact sheet addresses some of the common questions that patients have about the causes of, treatments for, and management of fatigue. Hopefully, knowing more about fatigue can help patients to have more energy to perform many of the daily activities they want and need to do. What causes fatigue? Fatigue is often associated with cancer and cancer treatments. At times there is a clinical cause for fatigue. However, often the exact cause is unknown. Published as a public service by The Leukemia & Lymphoma Society 1311 Mamaroneck Avenue White Plains, NY Information Resource Center (IRC)

2 Fatigue/2 Cancers like leukemia, Hodgkin and non-hodgkin lymphoma, and myeloma can cause fatigue directly, and/or fatigue may occur as a result of treatment for these diseases. These are some of the known physical, social and emotional causes: Disease complications such as anemia (decreased normal red blood cells) and infections can decrease the body s supply of oxygen and nutrients. The less oxygen or nutrients the body has to use, the less energy it will produce. Consequently, patients with blood cancers feel more tired or fatigued. As cancer cells die, they release certain substances into the body. These substances, sometimes referred to as cytokines, can be toxic and lead to feelings of fatigue. Changes in daily routines brought about by a blood cancer diagnosis also contribute to fatigue. Working, eating and sleeping patterns may change as a result of undergoing diagnostic tests, medical exams and treatments, and experiencing their side effects. Treatment may need to take place at a facility away from home, adding another change to the normal routine. The emotional stress of dealing with the diagnosis can be another cause of fatigue. Concentrating on absorbing a great deal of new information, making decisions, and coping with anxiety and depression, can not only contribute to sleep disruptions, but also creates extra demands for energy. Cancer treatments are now more effective and complex. Multi-modality treatments (combinations of treatments, such as chemotherapy and radiation therapy or other treatments) improve outcomes but also may cause more severe fatigue. What causes blood cancer treatment-related fatigue? Fatigue is a side effect of many of the treatments for blood cancer. Patients receiving cytotoxic chemotherapy, radiation therapy, stem cell transplantation, or treatment with biological therapy, generally experience some degree of fatigue. Barbara Lackritz stated in Adult Leukemia, Ninety-five percent of patients being treated for cancer report fatigue. Some of the known causes of treatment-related fatigue are: Drugs such as vincristine and vinblastine used in the treatment of leukemia, lymphoma, and myeloma may cause fatigue because of their effects on the peripheral nervous system. Biological response modifiers (such as interferon used in the treatment of chronic myelogenous leukemia) can cause side effects, such as flu-like symptoms and difficulty

3 Fatigue/3 thinking. These can contribute to severe fatigue during treatment that are sometimes managed by limiting doses. Fatigue that increases over time can result from radiation therapy for blood cancers. Radiation therapy may cause fatigue by increasing the demand for energy needed to repair damaged skin tissue. Stem cell transplants demand a great deal of energy from patients and their families. The treatment is lengthy and severe, and the resulting fatigue is long-term and intense. Transplant patients experience fatigue both during the treatment process and after its completion. Fatigue can last for a long time, even years after these treatments, although it will gradually lessen in the months following the procedures. Some people may experience fatigue for a year or longer after their cancer treatment. It varies with the individual and with the type and duration of treatment. The longer the person is undergoing treatment, the longer their fatigue may last. Are there medical treatments for fatigue? One way to fight fatigue is to treat the underlying physical problems, such as anemia, infections, or treatment side effects that cause fatigue. In some cases, cancer-related fatigue can be medically treated and even eliminated. If fatigue is related to anemia, for example, blood transfusions or medications designed to increase red blood cell production (Procrit or Aranesp ) can be helpful to raise red blood cell counts and help restore energy. In cases where medications are not effective, or cannot be used to treat anemia, blood transfusions may be given. Patients should speak with their doctors to determine if anemia is a cause of their fatigue. Medications that relieve certain treatment side effects, such as nausea or loss of appetite, may help patients to sleep better and improve their nutrition, and as a result, feel more energetic. Is there a connection between depression and fatigue? Cancer patients may experience both depression and fatigue. A recent large study concluded that depression and fatigue in cancer patients do not appear to have one common physical cause. Treating depression with selective serotonin reuptake inhibitors (SSRIs) improves mood but does not reduce fatigue. Further study is needed to better understand the relationship between depression and fatigue in cancer patients.

4 Fatigue/4 Other medications (psychostimulants) are currently under study. A recent, preliminary study concluded that cancer patients were able to report an improvement in fatigue-levels with the use of methylphenidate, a mild psychostimulant, after one-week and four-week trials. Non-drug therapies, such as cognitive behavioral therapy, may also be worthy of further medical study for the treatment of cancer-related fatigue. Cancer patients who think they may be experiencing depression should talk to their doctors about evaluation and treatment. What else can patients do to manage fatigue? Methods for coping with fatigue include lifestyle modifications, nutrition (diet, vitamin and mineral supplements), physical activities, and psychological counseling. Patients should consult their health care providers for guidance about diet, exercise and daily activities. The following suggestions may help patients manage fatigue: Keep a journal By keeping track of their fatigue, patients can learn to be more aware of the causes of their fatigue, and then develop customized coping strategies. Tired legs, tired eyes, lack of concentration, weakness or sleepiness, shortness of breath after light activity, difficulty performing ordinary tasks such as cooking, cleaning, taking a shower or making the bed, irritability, and impatience, are all signs of fatigue. Keep a record of factors such as: daily activities, medications and treatments, eating, sleeping, resting and relaxation habits, weight changes, financial stresses and energy/fatigue levels. A pattern of contributing factors will emerge, providing information for coping with fatigue. For example, one coping strategy is to schedule difficult tasks at times when energy is highest. Another is to get help with daily activities, such as grocery shopping, house cleaning and laundry, from family, friends, or community, or hired, services. The journal will also help identify questions to ask your health care provider. Practice good nutrition Eat a balanced diet including plenty of foods that supply sufficient calories, vitamins and minerals, including iron. Iron-rich foods include green, leafy vegetables and red meat. Maintain energy by eating more frequent, smaller meals or snacks throughout the day.

5 Fatigue/5 Make food preparation and shopping easier by getting help or contact home meal providers like Meals on Wheels to conserve energy for eating well. Consider using nutritious convenience foods or easy-to-prepare meals. Drink eight glasses of non-caffeinated liquids a day to help eliminate toxins associated with treatments that may cause fatigue. Be active Distract yourself from focusing on fatigue and illness by listening to music, reading a book, meeting friends, watching a movie, or going for a walk or a car ride. Focus on activities that can gradually build up strength and do not deplete energy. Light exercise, such as walking, is an activity that many people can do. Some people find that light exercise decreases their feelings of fatigue by helping them relax and to sleep better. Aim to do activities on a regular basis throughout the week, but be flexible and patient with yourself if you need to adjust your routine due to fatigue. Get enough sleep and rest Adjust levels of activity. Do not measure yourself by pre-diagnosis energy levels. Pace yourself and learn to set realistic goals until your energy level improves. Over time, keeping a journal will help you to track your progress. Rest when feeling tired. Allow time in your schedule to get more sleep during the night and to rest for short periods during the day. Take naps only if they do not interfere with nighttime sleep. Ask others for help. Many family members or friends, as well as charitable groups, are able to help you. Ask for assistance with routine tasks such as shopping, cooking, housekeeping, laundry, and driving, and other activities. Organize your time to avoid stress caused by rushing. Plan to do demanding activities at times when your energy levels are highest. Conserve energy by sitting down to bathe and dry off, and do household chores sitting down when possible.

6 Fatigue/6 Schedule treatments for times that will have the least effect on the energy you need for your job or other activities. For example, many patients who work find that scheduling treatment in the afternoon, or at the end of the week, enables them to be the most productive at their jobs. Reduce stress The negative effects of stress can be offset in many ways: exercise, relaxation techniques, visual imagery, meditation, spiritual practices, talking with others, and counseling. For many patients and their families, support groups are comforting and informative. The Leukemia & Lymphoma Society can help with referrals to its support groups and its First Connection program. First Connection links newly diagnosed patients with similarly diagnosed survivors. Resources The Leukemia & Lymphoma Society The Leukemia & Lymphoma Society is a national voluntary health agency with 63 chapters serving all 50 states. It provides education and support services for the public and for cancer treatment professionals. To find the Society chapter nearest you, visit our online chapter finder or contact: The Leukemia & Lymphoma Society 1311 Mamaroneck Avenue White Plains, NY (800) or Through the Society's Information Resource Center, callers may speak directly with an Information Specialist, Monday-Friday, 9 am- 6 pm, ET at (800) To contact an Information Specialist, click on Live Help (10 am- 5 pm) on the Society's Web site or us at infocenter@lls.org. Information Specialists can answer general questions about diagnosis and treatment options, offer guidance and support, and assist with clinical trial searches for leukemia, lymphoma and myeloma. The Society s Web site features a link to the clinical trial searching service of the National Cancer Institute. Clinical trials listings for blood cancers, including abstracts of clinical trial protocols and contact information, are available. The Society provides fact sheets and booklets that can be ordered via the 800 number or through the Free Materials section on the Web site,

7 Fatigue/7 For more information about fatigue on the Web: Fatigue Assessment Tool Facts You Should Know About Fatigue Oncology Nursing Society s ONS Online An information service, including information about fatigue, for oncology nurses, other healthcare professionals, people with cancer and their families and friends ONS and National Comprehensive Cancer Network References Beyond Miracles: Living with Cancer. Stephen P. Hersh, M.D. Chicago: Contemporary Books, Choices. Marion Morra and Eve Potts. New York: Avon Books, Everyone's Guide to Cancer Therapy. Malin Dollinger, M.D., Ernest H. Rosenbaum, M.D., and Greg Cable. Kansas City: Somerville House Books Limited, Managing the Fatigue of Bone Marrow Transplant. Lillian M. Nail, Ph.D., R.N., FAAN, and Carolyn W. Sutherland, M.S., R.N., OCN. Home HealthCare Consultant: vol. 4, No. 4, April 1997: NCCN Practice Guidelines for Cancer-related Fatigue. National Comprehensive Cancer Network, June 1, Cancer-Related Fatigue, Treatment Guidelines for Patients. American Cancer Society, Version 1, December, Adult Leukemia: A Comprehensive Guide for Patients and Families. Barbara Lackritz. O Reilly & Associates, Inc

8 Fatigue/8 Differential Effects of Paroxetine on Fatigue and Depression: A Randomized, Double-Blind Trial from the University of Rochester Cancer Center Community Clinical Oncology Program. Gary R. Morrow, et al., Journal of Clinical Oncology, Vol. 21, 2003: Patient-Controlled Methylphenidate for the Management of Fatigue in Patients with Advanced Cancer: A Preliminary Report. Bruera E, Driver L, Barnes EA, et al., Journal of Clinical Oncology, Vol. 21, 2003: Getting a grip on cancer fatigue. Tuma RS, CURE: Cancer Updates, Research and Education, Vol. 3, 2004: No.1: This publication is designed to provide accurate and authoritative information in regard to the subject matter covered. It is distributed as a public service by The Leukemia & Lymphoma Society, with the understanding that The Leukemia & Lymphoma Society is not engaged in rendering medical or other professional services. FS-3 April 2004