Acute Lymphoblastic Leukemia Patient & Family Handbook

n WHAT ARE ‘STAGES’? WHAT ARE ‘RISK GROUPS’? In childhood leukemia, “risk groups” are used instead of a system of “stages.” Your healthcare team will perform a series of tests to help determine your child’s type of leukemia and risk group. Once your child is diagnosed with ALL, he or she will be assigned to a risk group based on his or her age, WBC count at diagnosis, leukemia in the spinal fluid, or leukemia in the testicles. This will allow the healthcare team to determine the treatment plan during the first month. The initial risk groups at diagnosis are • average or standard risk—Includes children 1 to 9.99 years old who have a WBC count lower than 50,000 at diagnosis • high risk—Includes children younger than 1 year and 10 years or older or those with an initial WBC of 50,000 or higher at diagnosis. In addition, children with T-cell leukemia are classified in a higher-risk group. Children younger than 1 year (365 days) or those with ALL involving T-cells or mature B-cell leukemia will be treated on different treatment plans. The results from the cytogenetic testing and your child’s response to the initial treatment also will be used to further determine the risk group; however, these results will not be available until your child is 2–4 weeks into therapy. Cytogenetics results can shift your child into a lower or higher risk category. All these risk factors help the healthcare team determine your child’s prognosis and will be used to identify the best treatment plan. Further treatment decisions will be made approximately 1 month into treatment when this additional information is known. n HOW IS ALL TREATED? Most improvements in the treatment of childhood ALL have been made through research and enrollment of children with ALL in clinical trials. During a clinical trial, the best-known standard treatment for a particular cancer is compared with a new experimental treatment. This experimental treatment is believed to be at least as good as, and possibly better than, the standard treatment. Clinical trials allow your healthcare team to determine whether promising new treatments are safe and effective. The goal of a clinical trial is to find out which treatment offers the best chance for cure with the least number of side effects. Participation in clinical trials is voluntary. Because clinical trials involve research into new treatment plans, all

risks cannot be known ahead of time, and unknown side effects may occur. Prior to agreeing to a clinical trial, you will be given paperwork that explains the risks and benefits. Before making a decision about your child’s participation in a clinical trial, you should discuss the risks as well as the potential benefits with your child’s doctor and treatment team. Regardless of whether your child is treated in a clinical trial or not, the type and aggression level of treatment is determined by your child’s Risk Group, which is based on • age at diagnosis—Children younger than 1 year or 10 years and older require more aggressive treatment. • WBC count at diagnosis—Children who have a WBC count higher

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