Long-Term and Late Effects of Treatment for Childhood Leukemia Or Lymphoma Facts No
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Long-Term and Late Effects of Treatment for Childhood Leukemia or Lymphoma Facts No. 15 in a series providing the latest information for patients, caregivers and healthcare professionals www.LLS.org • Information Specialist: 800.955.4572 Introduction Highlights New drugs and new uses for existing drugs, as well as l Treatments for childhood leukemia and lymphoma improvements in radiation therapy and stem cell have led to increased survival rates. However, some transplantation techniques, have greatly improved cure rates treatments may cause significant long-term or late and remission periods for children with leukemia or effects. lymphoma. Research to improve outcomes for greater l Follow-up medical care to monitor survivors for numbers of children is ongoing. There is an emphasis on possible long-term or late effects is important. tailoring therapies to decrease side effects as well as long-term and late effects. l Parents should discuss possible long-term and late effects of treatment with their child’s healthcare Most survivors of childhood leukemia or lymphoma do providers for the purposes of planning, evaluation not develop significant long-term or late effects of and follow-up. treatment. Effects can range from mild to severe. However, it is important for parents to discuss possible long-term l Factors that determine a child’s risk for long-term or and late effects with their child’s treatment team so that the late effects include type and duration of treatment, proper planning, evaluation and follow-up can take place. age at time of treatment, gender and overall health. Factors that influence a child’s risk for developing long-term l Parents may need to educate family members and or late effects include friends about the challenges posed by the long-term and late effects of treatment. Parents need to • Type and duration of treatment advocate with school personnel on their child’s • Gender and age at time of treatment behalf. • Overall health. l Improvements in treatment have resulted in This publication can help you understand long-term and minimizing certain adverse effects of cancer therapies late effects and it provides guidance and resources for but more research in this area is needed. dealing with these treatment effects. l Long-term and late effects of treatment are important, ongoing areas of study. Researchers are Long-Term and Late Effects working to improve the understanding of long-term “Long-term effects” of cancer therapy are medical problems and late effects and to create guidelines on follow-up that persist for months or years after treatment ends. care. Examples of long-term effects are infertility, growth l Survivorship care plans are an important part of a problems and treatment-related fatigue. child’s long-term health plan. There is value in creating and using these plans for lifelong benefits. “Late effects” are medical problems that do not develop or become apparent until years after treatment ends. Examples of late effects include the development of a treatment- related cancer or heart disease. The long-term and late effects for survivors of childhood leukemia or lymphoma that may occur include effects on • Learning, called “cognitive effects” • Physical development This publication was supported • Psychological development. by a grant from FS15 Long-Term and Late Effects of Treatment for Childhood Leukemia or Lymphoma Facts I page 1 Revised March 2013 Long-Term and Late Effects of Treatment for Childhood Leukemia or Lymphoma Facts Specific effects depend upon a child’s age, gender, type of Parents may need to educate other family members, friends, treatment and additional factors. The range and severity of school personnel and healthcare providers about long-term potential long-term and late effects vary. Some children will and late effects. have no significant long-term or late effects or very mild Here are some ideas for steps parents can take: effects, and others may have serious complications. Some long-term and late effects become evident with maturation l Talk to your child’s doctors and discuss the potential for (puberty), growth and the normal aging process. It is long-term and late effects, as well as an ongoing plan to important for all children to be evaluated. Early evaluate possible effects of treatment. intervention and healthy lifestyle practices (not smoking, good nutrition and exercise, regular screening and l Keep a record of physical and emotional symptoms follow-up) may have a positive effect on the occurrence that your child experiences and discuss them with your and/or severity of effects. child’s treatment team. l Make sure that your child’s oncology team, primary care Learning (Cognitive) Effects providers and specialists—for example, cardiologists, Learning disabilities can begin during treatment or become allergists and endocrinologists—communicate with evident months or years after treatment. Mathematics, each other. spatial relationships, problem solving, attention span, l Keep all medical records, including dates and locations reading and spelling, processing of information, planning of treatment, specific drug and supportive therapies (for and organizing, and concentration skills are all areas of example, blood transfusions) and dosages, and specific learning that may be affected. Problems with fine motor sites and amounts of radiation therapy, if applicable. coordination, which might cause poor handwriting, can also Keep copies of blood, marrow and imaging test (MRI, develop. CT scan, x-ray) results. Physical Effects l Ask your child’s doctor for a written summary of the Children treated for leukemia or lymphoma may be at risk cancer treatment that your child received, including for fatigue, growth delays, thyroid dysfunction, hearing names of all drugs used, whether or not radiation was loss and the development of a secondary cancer. Children used, what type of surgical procedures were performed may also become infertile. The risk of infertility is related and whether your child experienced any unusual or to the areas of the body involved with cancer and the type, especially severe acute complications of cancer therapy. dose and combination of therapy. Age at treatment, sex and This summary is called a “survivorship care plan.” You genetic factors influence this risk. can read more about this on page 3. l Help your child to develop and maintain a healthy Psychological Effects lifestyle after treatment ends, including appropriate Most childhood survivors of cancer are psychologically exercise, sun protection, good nutrition and not smoking. healthy. However, some studies indicate that a small Enlist the help of health professionals as needed. number of childhood leukemia or lymphoma survivors were l Keep medical follow-up appointments with the more likely than healthy peers to report changes in mood, oncology team even if your child is feeling well. feelings or behavior, including depression or posttraumatic stress disorder. Returning to School Managing Long-Term and Late Effects School personnel may not be aware of the potential for long-term and late effects of treatment. Parents and Treatment for childhood leukemia or lymphoma consists medical professionals need to inform educators about the of chemotherapy and other drug therapies and may include child’s education needs before the child returns to school. radiation therapy or allogeneic stem cell transplantation. Parents, educators and medical professionals can work There are risks for long-term and late effects common to all together to develop a program tailored to the child’s specific of these treatments, which may include learning problems, needs. The program may include fatigue, bone or joint pain and an increased risk for developing a secondary cancer. Please see Examples of l Baseline testing—Children may benefit from baseline Long-Term and Late Effects of Treatmenton page 3. testing before treatment, if possible, and continued comparative testing during and after treatment to FS15 Long-Term and Late Effects of Treatment for Childhood Leukemia or LymphomaFacts I page 2 Long-Term and Late Effects of Treatment for Childhood Leukemia or Lymphoma Facts determine whether neurocognitive problems or 25-30 years or 10 years after radiation therapy; have associated learning disabilities have developed. annual clinical breast examinations and repeat mammograms every 2-3 years, depending on breast tissue. l Special accommodations—Steps can be taken to assist a child’s return to school, such as allowing him or her l Cranial radiation therapy should undergo more time to complete class work or take exams. neurocognitive testing at baseline, then whenever the Children adversely affected by cancer treatment may clinical need arises. qualify for aid under three different federal laws: the l Anthracycline, high-dose cyclophosphamide, or Americans with Disabilities Act, the Individuals with mediastinal or spinal radiation therapy should have base- Disabilities Education Act and the Rehabilitation Act. line testing for heart function, then every 3-5 years after l Long-term planning—Plans can be developed to help treatment or as needed if abnormalities are present. Cho- a child through certain situations such as transitioning lesterol and triglyceride levels should be tracked as they from middle school to high school or going on from may affect development of coronary artery heart disease. high school to secondary education and adult life. l Chest or mediastinal radiation, bleomycin, or More information is available