Neuroblastoma Patient & Family Handbook

Retinoic Acid Retinoic acid (isotretinoin) is a type of vitamin A derivative. It may be effective in the treatment of neuroblastoma when there is little to no evidence of disease. This medication works by taking immature, rapidly dividing neuroblastoma cells and teaching them to become mature nerve cells. It is given by mouth for 2 weeks each month for 6 months. The most common side effects include sensitivity to light; dry skin; and dry, cracked lips. Less common side effects may include irritability, mood swings, bone pain, nausea and abdominal discomfort, and diarrhea. Targeted Radionuclides Previously, we discussed how MIBG is absorbed by neuroblastoma tumors and cells and used to detect neuroblastoma throughout a child’s body at diagnosis and during follow-up testing. Higher doses of MIBG have been used as treatment for high-risk neuroblastoma that has not completely responded to standard therapies. Studies are underway that are looking at using this treatment option earlier in treatment, in induction therapy. If this is a treatment option for your child, your healthcare team will talk to you about potential side effects your child may experience. n HOW LONG WILL MY CHILD’S TREATMENT LAST? The length of time your child will receive treatment will be based on how his or her disease responds to the treatment. Generally induction chemotherapy, surgery, ablative chemotherapy, and radiation treatment take 6–9 months. The duration of immunotherapy varies, but is usually between 4–6 months, followed by retinoic acid for an additional 6 months. Some of these treatments may overlap. Follow-up blood tests and physical exams between chemotherapy treatments are done on an outpatient basis. However, your child may have to stay in the hospital if a fever develops while blood counts are low and the immune system is weakened. n WHAT IS MY CHLD’S PROGNOSIS? Prognosis varies greatly based on your child’s risk level. Neuroblastoma has an increased chance of being permanently cured if it is low or intermediate risk. High-risk neuroblastoma is more difficult to control, and the cure rate is lower, although it can be successfully treated. New therapies are being developed to improve treatment success. It is important to keep in mind that neuroblastoma may present differently in each child, with different characteristics, and may respond differently to treatment.

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