Lifelong Needs

Recent medical advances in the BMT field mean that many more patients now survive the prodcuedre, and consequently much more attention is now starting to be paid to the needs of long term survivors. From the experiences of survivors, has come much new knowledge about special and ongoing  health and psychosocial needs unique to those who have undergone BMT. It is now recognzed that many of the treatments (both drugs and radiation therapy) used against cancer and for BMT conditioning can cause health effects–called “late effects”– even many years after transplants. Of course, the experience of each individual will be different, and some BMT survivors develop few complications while others have many. FHCRC has a Long Term Follow Up (LTFU) Program which devotes special attention to the needs of recipients of unrelated-donor BMTs among its broader work. Most former CHRMC and SCCA patients who have received a BMT from an unrelated donor are seen yearly at FHCRC’s LTFU clinic, which also provides guidance and consultation to patients, their families and their community physicians.

On the national level, special medical guidelines have recently been developed concerning the life-long follow up needed by BMT survivors, as well as of childhood cancer survivors in general. There are also thriving online survivor communites and web resources, many of them created by survivors themselves who met online. For example, the all-volunteer Cancer Survivors Project  grew out of connections made by adult survivors of childhood cancer confronting health challenges that were not widely reocgnized by medical professionals; their collaboration became one of the first in-depth Internet resources on the topic.

Resources specific for long-term BMT survivors

Contact information
Long-Term Follow-Up Program, LF-240
Fred Hutchinson Cancer Research Center
PO Box 19024
Seattle, WA 98109-1024
phone:(206) 667-4415
fax: (206) 667-5619

FAQs — Pediatric long-term effects (FHCRC)

Possible Late Effects of Your Child’s Transplant (NMDP)

Long-Term Follow Up Newsletter (FHCRC)

FHCRC LTFU Guidelines for Patients
Guidelines for Pediatric Patients
List of general guidelines  for ongoing medical care, necessary follow up tests, and health maintenance tips and precautions.

Patient and Caregiver Resource Manual for Pediatric Allogeneic Patients
Downloadable modules from Patient and Family Resource Manual on food and water safety, home hygiene practices, nutrition and diet, and health monitoring.

Center for International Blood & Marrow Transplant Research Post-Transplant Guidelines for Patients & Physicians
Free print copy may be ordered; special edtion for allogeneic BMT, not pediatric -specific

Children’s Oncology Group (COG) Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers

Cancer Survivors Project

Internet discussion lists hosted by Association of Cancer Online Resources (ACOR)
Long-Term Survivors List