Long-Term Follow-Up after transplant
The Fred Hutchinson Long-Term Follow-Up (LTFU) Program at Seattle Cancer Care Alliance (SCCA) provides life-long monitoring and care for people who have had a bone marrow or stem cell transplant.
Our doctors will work in partnership with you and your local doctors to resolve medical problems. We also gather information from survivors to better prevent and treat long-term effects of transplantation.
Our LTFU specialists follow more than 5,000 patients, both children and adults, some of whom had a transplant more than 40 years ago.
In 2005, while working as a forest ranger in Wisconsin, Ted Ave’Lallemant started feeling ill. His fever and exhaustion tailed him for three weeks until he visited his doctor.
After you return home, LTFU nurses and doctors are available for telephone consultations with your local doctor, as well as discussions with you and your family members about post-transplant concerns. Your phone inquiry will be handled by a nurse with expertise in post-transplantation care, working with a doctor who regularly reviews transplant cases.
For some types of problems, you may need to return to the LTFU Clinic at SCCA at south Lake Union for specialized care, such as treatment for graft-versus-host disease (GVHD). If you have received an allogeneic (donor) transplant, you are asked to return at your one-year transplant anniversary for special testing to review your progress.
We also have information to guide physicians caring for transplant recipients after their return home.
After returning home following a transplant, you become part of our LTFU Research Program. This is a life-long program of monitoring that continues for as long as you want to participate.
You and your doctors will be asked to complete a questionnaire at six months, one year, and each year after your transplant. Collecting data from you and your doctors, even decades after treatment, allows LTFU researchers to learn about the long-term effects of transplantation. This helps us determine the best course of preventive care or treatment for current as well as future patients. We encourage you — even if you are not having post-transplant problems--to participate so our research is more accurate and informative.
You also may be interested in learning about or participating in SCCA clinical studies to improve management of the after effects of cancer treatment and lower risk of future cancers.
Frequently Asked Questions (FAQs)
A transplant and related treatments are intensive. They can impact many systems of your body — in ways that may clear up after weeks or months and in ways that may last for many years or even the rest of your life.
The LTFU Program helps you and your doctor prevent, manage and treat late effects and consider alternatives if your original disease comes back.
After your transplant, we can help with:
- Regimen-related complications — effects of the conditioning you had before your transplant, including effects throughout your body, from your immune system to your skin, internal organs and emotional health.
- Transplant complications — such as lasting fatigue, sexuality issues, trouble concentrating and other complications that may affect your quality of life at home, work or school, as well as increased risk for a new cancer in the future.
- Graft-versus-host disease (GVHD) — which occurs only in people who received cells from a donor (allogeneic transplant) rather than having a transplant of their own cells (autologous transplant). SCCA has a team of world experts in managing GVHD.
- Cancer recurrence — which your oncologist will look for during regular check-ups. Our LTFU consultation service is available to discuss options for treating recurrent disease.
In the first months after your transplant, you will receive direct care in a dedicated post-transplant clinic from one of the transplant teams at SCCA.
Typically, we discharge you from this early post-transplant service to your referring doctor for ongoing follow-up care one month after an autologous transplant and three months after an allogeneic transplant.
Once you are discharged, you become an LTFU patient.
To get ready for discharge, we give you a comprehensive transplant departure evaluation to:
- Check the status of the disease for which you had your transplant.
- Screen you for chronic GVHD, if you had an allogeneic transplant.
- Check the status of the graft (how well the transplanted cells are working).
- Assess your immune system.
You also meet with an LTFU nurse to go over:
- Things you need to know before going home
- Signs to watch for
- How to prevent and treat late complications
We also ask you to complete a health questionnaire to get baseline information about your experience up to that point.
Follow-up continues after you are discharged and you return to the care of your previous doctor.
- Some effects of your transplant and treatment may develop later or affect you for many years and possibly forever.
- Most people who receive a transplant need some level of long-term follow-up care for the rest of their lives.
- Specifics about follow-up and monitoring depend on the type of transplant you had, your diagnosis, your age, your gender and other factors.
- Though follow-up may mean monthly or only annual visits for some people, the LTFU team is here to see you as frequently as you need.
Here are the elements we have in place to support you over the long term.
Patient and caregiver resource manual
You’ll receive a detailed resource manual to take home and have a long-term follow-up class.
Our LTFU medical team provides lifelong telephone consultations for you and your health care providers — whether in Seattle or elsewhere — whenever needed. Our telemedicine staff can talk with you about:
- How to manage late complications
- The newest interventions
- Alternatives to address recurrence of your original disease, if this occurs
We provide face-to-face follow-up care, including comprehensive annual evaluations and specialized care, in the LTFU Clinic on the 6th floor of the SCCA outpatient clinic on Lake Union.
- Most of our patients return for at least one comprehensive annual visit.
- We see patients with GVHD more frequently. People who have chronic GVHD may need LTFU Clinic evaluations or care several times a year.
- We will figure out a schedule for you based on your needs.
We monitor your post-transplant experience as part of our long-term follow-up research program.
- We send questionnaires annually to assess your health and other long-term issues. This helps us improve transplant outcomes for future patients. It also helps us improve follow-up care for all our current patients, including you.
- We can also help connect you to clinical trials that are looking for better ways to prevent and treat late effects of transplant or manage recurrent malignancies after transplant.
Despite safer and more effective transplants, some patients develop severe post-transplant complications that keep them from being discharged to their referring provider at the usual time. Other patients who have already been discharged experience new, severe post-transplant complications other than chronic GVHD that may be difficult for a referring provider to handle.
SCCA’s Transitional Transplant Clinic (TTC) serves patients who develop complex transplant-related problems more than two to four months after their transplant. These patients need frequent, lengthy clinic visits by transplant experts. The TTC team cares for them until they improve or stabilize and can transition back to their referring provider — while continuing to have periodic follow-up evaluations by the LTFU team.
Contact Long-Term Follow-Up
Calls are assigned priority according to medical urgency and the order in which they are received. In many cases, LTFU may need to contact your doctor for further information or to coordinate necessary care. Complex problems not requiring an immediate response may be discussed at an LTFU clinical care conference held twice a week. In general, most calls receive a response within 24 hours. But please be aware that the response time depends on the volume and nature of the calls received. At times there may be a delay in responding to less urgent problems.
Long-Term Follow-Up Program, LF-240
Fred Hutchinson Cancer Research Center
PO Box 19024
Seattle, WA 98109-1024
These are the most requested topics about coping with long-term effects of transplantation. These articles are from trusted resources such as the National Cancer Institute.