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Helping Survivors Thrive after Marrow and Cord Blood Transplants

by Elizabeth A. Murphy, EdD, RN

Photo by Cancer Type

Advances in transplant science have improved outcomes and have made transplant a viable treatment option for more people and a wider range of diseases.

A Growing Community of Survivors
In 2005, more than 13,700 people in the United States were treated with a marrow or cord blood transplant that used either their own blood-forming cells or those from a volunteer donor or cord blood unit. The majority of these transplants were performed for recipients with leukemia, lymphoma, or multiple myeloma.

While a growing number of transplant recipients are living longer, many face continuing health issues. After a transplant, recipients and their caregivers face additional physical, financial, and emotional challenges. Most transplant survivors have long-term effects or complications, which can include chronic and debilitating immune system disorders, fatigue, memory and concentration problems, infertility, and an increased risk of secondary cancers. The medical, financial, and emotional costs of transplant continue well into recovery and can burden recipients and caregivers for years.

Increasing Support and Resources for the Survivor Community
It’s important for recipients to have access to the tools and resources they need to improve their health and prevent or treat problems that might later develop. To address education needs that have come with the rise in transplant procedures, the National Marrow Donor Program’s Office of Patient Advocacy develops programs and resources to support the needs of transplant recipients from diagnosis through survivorship.

Today, the NMDP’s Office of Patient Advocacy is leading a new initiative to help transplant recipients thrive after transplant. A partnership with more than 20 patient-focused organizations, including the Lance Armstrong Foundation, The Leukemia & Lymphoma Society, and the National Coalition for Cancer Survivorship, will increase the awareness and education needed to care for this survivor population.

Through a grant from the Centers for Disease Control and Prevention, the Office of Patient Advocacy and its partners will continue to provide and increase that support by developing a comprehensive list of transplant survivor resources, conducting provider training on transplant survivor issues, and creating comprehensive care plan guidelines for providers.

Additional Resources for Survivors
In addition to the resources offered by organizations like the NMDP, community support can be a powerful tool to help survivors overcome post-treatment challenges.

  • Use cancer resources.
    There are many organizations, both locally and nationally, that support survivors. In addition to the NMDP, these include the Lance Armstrong Foundation and The Wellness Community, as well as local chapters of the American Cancer Society and The Leukemia & Lymphoma Society.
  • Support others.
    Helping others who are undergoing similar challenges can empower survivors.
  • Share stories.
    Sharing personal stories is a great way to get the information and support you need. You can share your personal story at NMDP’s LifeJourneys Transplant Community website, foundation.marrow.org/LifeJourneys.

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Dr. Elizabeth Murphy has served as the director for the NMDP’s Office of Patient Advocacy for five years. OPA services include case management, health services research, patient financial assistance programs, and development of educational programs and materials.

Case managers through National Marrow Donor Program’s Office of Patient Advocacy are available to provide support and answer questions. For more information, call (888) 999-6743 or visit www.marrow.org/patient.

This article was published in Coping® with Cancer magazine, November/December 2008.