Long-term follow-up after bone marrow transplant


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

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Patients and referring providers can speak with a specialized patient care coordinator, Monday – Friday, 8 am – 4:30 pm.

Why does long-term follow-up matter?


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.

 

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 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.

How do I make the transition to long-term follow-up?


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.

How long does follow-up last?


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.

 

What do I get through the LTFU Program?


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. You can also find information online 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 late complications 
  • The newest interventions
  • Alternatives to address recurrence of your original disease, if this occurs

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 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.

What if I need more care?


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.

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