Acute Myelogenous Leukemia Patient & Family Handbook

normal blood counts (the number of RBCs, WBCs, and platelets), because many chemotherapy drugs used to treat AML can cause anemia (low RBC count), neutropenia (low WBC count), and thrombocytopenia (low platelet count). AML therapy often causes significant neutropenia, which places a child at risk for developing life-threatening infections that can last for several weeks. Depending on which blood cells have lowered counts, your child may experience fatigue, headaches, bruising, and difficulty breathing. Some side effects may last longer than a few weeks or may not occur until years after therapy. Your child’s healthcare team will continue to see your child after treatment has been completed. Certain tests may be performed to look for any late effects of treatment. Monoclonal Antibody Therapy Common side effects of monoclonal antibody therapy include nausea, vomiting, headache, loss of appetite, fever and chills (most common with the first dose), fatigue, and weakness. As with chemotherapy, the most serious common side effect of monoclonal antibody therapy is the lowering of blood counts (the number of RBCs, WBCs, or platelets). When chemotherapy and monoclonal antibodies are used together, the side effects may be more severe. Veno-occlusive disease (VOD) of the liver is a possible side effect when a patient is receiving monoclonal antibody therapy. VOD causes an increase in bilirubin (which causes jaundice, a temporary yellowing of the skin), an enlarged and painful liver, and retention of fluid (resulting in weight gain). Less common side effects include rash, hives, irregular heartbeat during infusion, dizziness or fainting, anxiety, and difficulty sleeping. A rare but serious side effect is an allergic reaction during the infusion. n WHAT IS A CLINICAL TRIAL? Clinical trials allow healthcare providers to determine whether promising new treatments are safe and effective. Most of the advances in the treatment of childhood cancer have been made through the use of clinical trials. During clinical trials, the best-known standard treatment for a particular cancer is compared with a new experimental treatment. The experimental treatment is believed to be at least as good as, and possibly better than, the standard treatment. 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. However, children who participate in clinical trials can be among the first to benefit from new treatment approaches. Before making a decision about your child’s participation in a clinical trial, you should discuss the risks and the potential benefits with your child’s doctor and treatment team. n WHAT IS REMISSION? Remission , in patients with AML, means standard testing techniques cannot find leukemia cells in the bone marrow after chemotherapy. The amount of leukemia cells left in the bone marrow after the first cycle, or induction cycle, of chemotherapy is important in determining the next path of treatment. There are two forms of remission: 1. Remission (or pathologic complete remission) is defined as having less than 5% leukemia cells when the bone marrow is studied under a microscope, blood cell counts have returned to normal, and there are no other signs or symptoms of leukemia. 2. Complete molecular remission is defined as 0% leukemia cells in the bone marrow when using more sensitive tests, such as polymerase chain reaction (PCR).

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