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Coping with Blood Cancers

Long-Term and Late Effects of Treatment


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Cure rates and remission periods for adults with leukemia, lymphoma, myeloma, myelodysplastic syndromes, and other blood cancers are greatly improved because of new drugs, new uses for existing drugs, and improvements in radiation therapy and stem cell transplantation techniques. Research to improve health outcomes for more people with blood cancers is ongoing. Physicians are working to tailor therapies to decrease side effects, as well as long-term and late effects.

Survivors of blood cancers do not always have serious long-term or late effects of treatment. Effects can range from mild to severe. However, it is important to talk about possible long-term and late effects with your treatment team to plan treatment and follow-up care. The risk for developing long-term or late effects may be influenced by the type and duration of treatment, the person’s age at the time of treatment, the person’s gender, and the person’s overall health.

General Information About Long-Term and Late Effects of Treatment
Long-term effects of cancer therapy are medical problems that last for months or years after treatment ends. Fertility problems and treatment-related fatigue are examples of long-term effects.

Late effects are medical problems that do not show up or get noticed until years after treatment ends. Treatment-related cancer and heart disease are examples of late effects.

Long-term and late effects for survivors of blood cancers may include

  • Cognitive effects – Cancer treatments such as chemotherapy and radiation therapy can cause problems with mental functions, such as concentration, memory, and the ability to multitask (to keep track of and do different tasks at the same time). These effects are sometimes referred to as “chemo brain” or “brain fog.”
  • Physical effects – Depending on the type and duration of treatment and individual risk factors, including genetics and overall health, adults may be at risk for heart or thyroid problems, hearing loss, and secondary cancer, among other conditions.
  • Psychological effects – Some individuals may experience long-term psychological effects after treatment ends, including depression or post-traumatic stress disorder.

The cognitive, physical, and psychological effects of cancer treatment can affect the everyday activities of survivors. Support and help are available for people with cancer and survivors, who may face job discrimination, difficulty getting health or life insurance, financial issues, relationship or social problems, and lack of follow-up care. Resources for people with cancer and survivors include The Information Resource Center at the Leukemia & Lymphoma Society (LLS.org), federal and state laws that protect cancer survivors from job or insurance discrimination, vocational rehabilitation, community support groups, and national advocacy organizations.

Managing Long-Term and Late Effects
Cancer survivors may need to educate family members, friends, and healthcare providers about long-term and late effects.

Here are some suggestions for managing the long-term and late effects of treatment:

  • Keep a record of any physical or emotional symptoms that you experience and discuss them with your treatment team.
  • Keep all medical records, including dates and locations of cancer treatment, drugs and supportive therapies (e.g., blood transfusions) and dosages, and specific sites and amounts of radiation therapy, if applicable. Keep a copy of blood, marrow, and imaging test results (MRIs, CT scans, X-rays).
  • Follow a health plan that includes being active, using sun protection, and eating healthy foods. Do not smoke or use tobacco products. If you do, get help from healthcare professionals with quitting.
  • Keep medical follow-up appointments.
  • Stay informed. Ask your treatment team for the latest information on long-term and late effects of cancer treatment.

Follow-Up Care
Medical follow-up care gives doctors the chance to monitor disease response to current or past treatments over a period of time; identify recurrence of the disease, if any; and detect long-term or late effects. Cancer survivors should see their primary care physicians for general health and physical examinations yearly or more often, as needed. They should see their oncologists for follow-up cancer care. Regular examinations may include screening for cancer recurrence, for the development of secondary cancer, or for other late effects of treatment. Coordination between oncologists and primary care physicians is important to provide the best care possible.

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Learn more about leukemia, lymphoma, and myeloma on the Leukemia & Lymphoma Society website at LLS.org, or contact the Information Resource Center with any blood cancer questions by calling (800) 955-4572. The IRC provides accurate, up-to-date disease and treatment information. Information specialists are available to speak with callers Monday through Friday, 9 a.m. to 6 p.m. ET.

Excerpted with permission from Long-Term and Late Effects of Treatment in Adults, copyright © 2008 by the Leukemia & Lymphoma Society, LLS.org.

This article was published in Coping® with Cancer magazine, September/October 2009.