Long-Term Follow-Up

A responsibility to improve health

About 16,000 people are treated with blood or marrow transplantation in the U.S. each year, with more survivors than ever before. In 2012, 456 blood or marrow transplants were done at Seattle Cancer Care Alliance.

But transplantation is an extremely complex medical procedure—one that is quite tough on the body and mind. And that goes a long way in explaining why transplant survivors have higher rates of long-term and late effects than patients treated with other types of therapy.

"Transplantation leaves a deep footprint in our patients' lives," said Dr. Paul Martin, LTFU director. "We have a responsibility to work with our patients to improve their health."

The problems that patients have after transplantation are a key concern at Fred Hutch, where researchers have been conducting studies to figure out how to provide the best follow-up care. Attention to quality of life has also jumped to the forefront nationally, as the numbers of survivors continues to grow.

This is one of the reasons why Martin and Drs. Karen Syrjala and Stephanie Lee, all experts in survivorship, recently co-authored an article that discusses long-term complications and outlines best practices to deliver care to transplant patients.

"Addressing these complex potential or actual complications requires diligent routine health care to intervene early or, when possible, to prevent late complications," they wrote in the Journal of Clinical Oncology.

"We wanted to provide a broad overview of the long-term complications, and offer our best guidance, so that physicians and others who help transplant patients clearly understand these important problems," Martin said.

The Fred Hutch trio stressed the importance of an annual comprehensive physical examination among its recommendations.

The examination, they said, should be given a high priority. In such an examination, patients should be screened for the physical and psychological consequences of treatment.

They should receive their vaccinations, and they should be encouraged to lead healthy lifestyles—an important factor in ameliorating some of the problems that can occur after transplantation.

"We are seeking to understand where these problems are coming from, but it's also important that we empower our patients, that we give them the skills and resources so they can manage their health better," Martin said.

In their article, the authors wrote, "Optimizing the health of this population requires application of known screening and management strategies as well as clear communication with survivors and their caregivers to ensure that everyone is aware of survivors' increased risks and the importance of specific health behaviors."

Further study is needed to find better ways of meeting the needs of transplant patients.

Many patients are under the care of internists and oncologists who are not as familiar with the complex medical needs associated with transplantation. This is one of the reasons why Fred Hutch doctors want to empower patients so they can advocate for their own needs.

"We want to inspire patients. We want to put more control in patients' hands, and give them the tools to help themselves," Martin said.

What patients are telling us

Each year, LTFU sends out a patient questionnaire. Here are some of the comments made by patients in the 2012 survey.

"I'm not exactly sure what normal is right now, but I live each day as it comes. I know my issues are not life threatening, so, I do consider myself pretty healthy—healthy enough to take a month's trip to Italy this May for our 50th wedding anniversary. I am grateful for my life."
Allogeneic transplant 2005—now 70 years old

"The most important advice I could ever give to someone dealing with life after transplant is: Waste no time wishing you could get back exactly to where you were before transplant. Your life will instantly become more fulfilling and enjoyable the moment you stop being, say 70 percent of what you used to be, and becoming 100 percent of what you are now!"
Allogeneic transplant 2005—now 52 years old

"I'm grateful for the gift of life my sister gave me with her stem cells, but I'm finding it more and more difficult to maintain the "joie de vivre" I had which helped take me through the difficult recovery and GVHD problems.

"I feel like maybe I am becoming a burden on my two children. Health problems and now financial problems make it very hard to remain positive."
Allogeneic transplant 2001—now 68 years old

"I may complain sometimes but I do realize that I am a lot better off than some of the other survivors. The aging process is my biggest opponent, but my wife always reminds me that, 'Old age is not for sissies!'"
Allogeneic transplant 1983—now 68 years old

"Today, I celebrate 26 years post-transplant. My odds for living after the transplant were horrible 26 years ago. I heard all the things that could go wrong and also what I could be living with for the rest of my life. Yes, I did get some of those, but, I'm here and living.

"For those that don't know my story, they look at me as normal and a little silly at times. When I reveal my medical journey, they look at me as a miracle and it gives them a new look at life. That's about the time I re-look at my life and realize it's not so bland and that there is a purpose. Thank you, Hutch, for giving me these years! I am making a difference."
Allogeneic transplant 1986—now 46 years old

Fred Hutchinson Cancer Research Center is a world leader in research to prevent, detect and treat cancer and other life-threatening diseases.