Disease Information & Support

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Follow-Up Care

Parents of JMML patients are advised to discuss survival information with their child's doctor. The treatment of JMML patients hasn't led to long-lasting remissions in most cases. However, individual factors influence patient outcome. See Treatment Outcomes.

Clinical Practice Guidelines

The National Comprehensive Cancer Network (NCCN) produces Clinical Practice Guidelines in Oncology for most cancers, which many doctors follow. Their guidelines are among the most comprehensive and most frequently updated clinical practice guidelines available in any area of medicine. You can download guidelines at the NCCN website for helpful information about JMML to discuss with your doctor.

Returning to School

Educate family members, friends, school personnel and healthcare providers about your child's possible long-term and late effects of treatment. Talk with teachers about your child's needs before he or she returns to school. Work with your child's teachers and medical providers to develop a program tailored to his or her needs that features baseline testing, special accommodations and long-term planning.

Ongoing Research

Researchers are working to improve their understanding of long-term and late effects and to create guidelines for follow-up care. They're also seeking to understand how factors like aging and social and economic status influence long-term and late effects. The Leukemia & Lymphoma Society (LLS) is currently funding an initiative at Children's Hospital of Philadelphia to discover and eliminate the causes of cancer treatment's late effects.

last updated on Wednesday, March 14, 2012
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