Neuroblastoma Patient & Family Handbook

n WHAT NEW THERAPIES ARE AVAILABLE? Most of the advances made in the treatment of childhood cancer have been gained through a process known as clinical trials. In clinical trials, the best known (standard) treatment for a specific cancer is compared with a new (experimental) treatment that is believed to be at least as good as the standard. Clinical trials allow doctors to determine whether promising new treatments are safe and effective. Clinical trials test new chemotherapy combinations and regimens, alternative ways of giving radiation therapy, updated procedures for stem cell rescue following high-dose chemotherapy, advances in immunotherapy, targeted radionuclides, genetic testing and medications that target abnormal gene growth, and much more. Participation in clinical trials is voluntary. On one hand, because clinical trials involve research into new treatment plans, all risks cannot be known ahead of time, and unknown side effects may occur. On the other, children who participate in clinical trials can be among the first to benefit from new treatments. Before making a decision about your child’s participation in a clinical trial, discuss the risks and the potential benefits with your child’s doctor and treatment team. More information about clinical trials is available in the free booklet Taking Part in Cancer Treatment Research Studies (National Cancer Institute Publication P105). To get this booklet, go to https://pubs.cancer.gov/ncipl/detail.aspx?prodid=P105. n HOW CAN I WORK WITH MY CHILD’S HEALTHCARE TEAM? Your child’s care requires a team approach. You are a key player on your child’s healthcare team. You know your child better than anyone else and your input is important. Other members of your child’s healthcare team include doctors, nurses, pharmacists, and social workers. Always communicate openly with the members of your child’s healthcare team. Ask questions when there is anything you are not sure about. Write down your questions as you think of them to help you remember them when the healthcare team is there. Here are some examples of questions to ask: • What kind of cancer does my child have? • Has the cancer spread beyond the primary site? • What is the stage and risk group of the cancer, and what does that mean? • Is the MYCN gene amplified in my child? • What tests need to be done before starting treatment?

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