Long-Term Survivors:
What You Should Know
What’s your answer to this question:
How long after transplant should survivors be screened for transplant-related problems?
- 6 months
- 1 year
- 3 years
- 5 years
- 10 years
- for life
If you answered “for life”, you’re correct. Despite the fact that most problems appear in the first few years after transplant, problems can emerge long-term, say experts.
A recent BMT InfoNet survey of 593 transplant survivors found many did not realize the importance of screening for transplant complications long-term. Twenty percent thought that screenings could end 5 years after transplant, and only 67 percent of respondents knew screenings should continue for life.
“Although long-term transplant survivors usually enjoy good health, late complications can arise,” says Douglas Rizzo MD with the Center for International Blood & Marrow Transplant Research (CIBMTR). “Early detection and prevention of problems can result in better health for survivors long-term.”
New Guidelines
Three leading scientific organizations recently released recommendations for long-term follow-up of transplant survivors. These guidelines were published in Biology of Blood and Marrow Transplantation, volume 12, issue 2, February 2006, pages 138-151. A brochure, written in lay language, that discusses these guidelines will be available later this year.
“The guidelines are important because many survivors are no longer under the care of transplant centers several years after transplant,” says Rizzo. “Often community health providers are less familiar with health issues related to bone marrow, peripheral blood stem cell and cord blood transplants.”
The recommendations cover a wide range of possible complications. Although some pertain only to patients who have had a transplant with donor marrow, stem cells or cord blood, many apply to patients transplanted with their own marrow or stem cells as well.
Included are steps to prevent and/or detect:
- Infection
- Mouth and dental problems
- Liver, kidney and bladder problems
- Heart and blood circulation problems
- Breathing difficulties
- Bone and muscle problems
- Thyroid disorders
- Growth problems
- Difficulties with sexuality
- Eye problems
- Nervous system problems
- New cancers
- Emotional and psychological problems
The guidelines are not a substitute for follow-up instructions from a patient’s transplant center, stresses Rizzo. “Patients and their doctors should always feel free to consult directly with the transplant center about specific questions and concerns.”
“The goal of these recommendations is to help survivors safeguard their new lease on life,” says Sue Stewart, Executive Director of BMT InfoNet and Co-Chair of the Patient Advocacy Committee of the CIBMTR. “We encourage survivors to share these guidelines with all of their doctors, including their dentist, so that their unique long-term health needs can be appropriately addressed.”
A full copy of the recommendations can be viewed online at www.bmtinfonet.org/materials/LateEffects.pdf. Pediatric cancer survivors can view additional guidelines at www.survivorshipguidelines.org.
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