Bone Marrow Transplant

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Long-Term Follow-Up

Seattle Cancer Care Alliance (SCCA) and Fred Hutch have a dedicated Long-Term Follow-Up (LTFU) Program designed to provide lifelong support to people who have had a bone marrow transplant. This includes more than 5,000 patients, both children and adults, some of whom had a transplant more than 40 years ago.

The dedicated specialists on the LTFU team provide thorough care for patients after transplant, helping manage side effects and complications of treatment, including managing medications to prevent or treat graft-versus-host disease (GVHD) for those who had an allogeneic transplant.

When Does Long-Term Follow-Up Start?

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 patients from this early post-transplant service to their 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.

In preparation for your discharge, we will 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 will meet with one of our LTFU nurses to go over the things you need to know before going home, signs to watch for, and recommendations about how to prevent and treat late complications. We will also ask you to complete a health questionnaire to provide baseline information about your experience up to that point. This questionnaire will be filed in your LTFU medical records.

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. Our LTFU Program provides follow-up and treatment guidelines for all patients who have a transplant here.

While 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 to be seen.

Transitional Transplant Clinic

Despite safer and more effective transplants, some patients will develop severe post-transplant complications that prevent them from being discharged to their referring provider at the usual time. Other patients who have already been discharged may 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) was established for patients who develop complex transplant-related problems more than two to four months after transplantation. These patients require frequent, lengthy clinic visits by transplant experts. The TTC team cares for them until they improve or stabilize so that they can transition back to their referring provider—while continuing to have periodic follow-up evaluations by the LTFU team.

What Do I Get Through the LTFU Program?

Here are the elements we have in place to help support you over the long term.

Patient & Caregiver Resource Manual

Everyone who has a transplant receives a detailed resource manual to take home and has a long-term follow-up class. You can find additional information in the SCCA Patient Guide about:

Telephone Consultations

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 any late complications you may be experiencing, including the newest interventions, and alternatives to address recurrence of your original disease, if this occurs. We will give you the LTFU office contact information before you return home.

Direct Care

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.

Research

We monitor your post-transplant experience as part of our long-term follow-up research program. We send questionnaires to each patient annually to assess their health status 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.

Children & Long-Term Follow-Up

Long-term follow-up care doesn’t just monitor for transplant-related problems. For children especially, it is important to monitor growth and development; adolescent girls will need gynecological follow-up, and most children will need monitoring for dental issues as their mouths develop. Visit our section on pediatric bone marrow transplant, including pediatric transplant long-term follow-up.

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