Long-Term Follow-Up Program
The Fred Hutch Long-Term Follow-Up (LTFU) Program at Seattle Cancer Care Alliance (SCCA) provides lifelong monitoring and care for people like you who have had a blood and marrow transplant (BMT).
Through the program, physicians who are experts in post-BMT care work with you and your local physician to help keep you as healthy as possible and to manage any health problems you may have. You’ll also be able to join the LTFU Research Program and share your insights with us.
Services and research
We follow up with more than 6,000 patients, both children and adults. Some of them had a BMT more than 40 years ago. Learn more below about the services we provide and our research program.
LTFU nurses and physicians can discuss your health with your local physician. They also provide information to guide your physician in caring for you after you return home.
A nurse can talk to you and your family about any concerns you may have, too. LTFU nurses are experts in post-BMT care and work with a physician who regularly reviews transplant cases.
Most of the time, these consultations happen over the phone. For some issues, you may need to come to our clinic at SCCA South Lake Union for specialized care, such as treatment for graft-versus-host disease (GVHD).
If you received an allogeneic (donor) transplant, you will need to come in for a checkup when you reach your one-year transplant anniversary. If you were your own donor, we will also invite you back for a checkup.
When you join LTFU, you can also join the LTFU Research Program. This is a lifelong monitoring program that continues for as long as you want to participate.
You and your local physician will be asked to answer some questions at six months and again at one year after your transplant, then each year after that. Collecting this information over the years helps our researchers decide on the best types of preventive care or treatment for current and future patients. Even if you are not having any post-transplant problems, we encourage you to participate.
Frequently Asked Questions (FAQs)
Blood and marrow transplant (BMT) and the related procedures and steps that are needed to prepare you for BMT are intense, and they can impact many systems of your body. Some issues may go away on their own after a few weeks or months. Others may not.
The LTFU Program helps you and your local physician prevent, manage and treat long-term effects of BMT and consider options if your original disease returns.
The LTFU team can help with any complications that may affect your quality of life and/or increase your risk for developing cancer in the future. Here are some of the ways we can help you:
Conditioning-related complications: For example, problems with your immune system, skin, internal organs or emotional health issues.
Transplant complications: These can include ongoing tiredness, sexuality issues and trouble concentrating.
Graft-versus-host disease (GVHD): GVHD can only happen if you had an allogeneic (donor) transplant. SCCA has a team of world-renowned experts who can help manage GVHD if you develop it.
Cancer recurrence: Your local physician will perform regular checkups in order to detect any issues, such as a recurring cancer, as early as possible. If your cancer comes back, our LTFU experts can meet with you and your local physician to discuss treatment options.
Before you can be discharged and join LTFU, we give you a complete transplant departure evaluation to:
Check the status of the disease for which you had your transplant
Test you for chronic graft-versus-host disease (GVHD), if you had an allogeneic (donor) transplant
Check how well the transplanted cells are working
Assess your immune system and your body’s ability to fight infection
You also will meet with an LTFU nurse to go over:
What you need to know before going home
Signs to watch for that may mean you have a problem
How to prevent and manage late effects (problems that happen after treatment)
Telephone consultations: The LTFU care team provides telephone consultations for you and your physician whenever you need it, for the rest of your life. Our experienced staff can help with issues such as:
How to manage late effects (problems that happen after treatment)
The newest treatment options or clinical trials that might help you
Care options if your original disease comes back
In-person care: LTFU provides in-person, follow-up care, including complete yearly evaluations and specialized care at the LTFU Clinic on the sixth floor of SCCA South Lake Union.
Most LTFU patients return for at least one in-person annual evaluation.
If you have GVHD, you will come to the clinic more than once a year. If you have chronic GVHD, you may need to come in several times a year.
LTFU Research Program: If you decide to join, we will follow up on your post-transplant experience and listen to your feedback. By being part of the program, you will help others like you who are going through BMT and help us build our knowledge about life and care after BMT.
Patient and caregiver resource manual: This manual includes detailed information on how to manage your care at home after your BMT.
Class: You will have a long-term follow-up class led by a registered nurse (RN).
We try our best to respond to calls and emails within 24 hours; however, we cannot guarantee this response time. All calls and emails are prioritized. If your problem is not urgent, our BMT experts may discuss your case at the LTFU clinical care conference, a meeting of BMT experts that happens twice a week.
Transitional Transplant Clinic
If you develop post-transplant complications, we will continue to help you until you are ready to be discharged to your physician. If you have recently been discharged, but you are having post-transplant complications (other than chronic GVHD) that may be difficult for your physician to manage, we will care for you through our Transitional Transplant Clinic (TTC).
TTC helps patients who develop complex transplant-related complications within the first few months after their transplant. If you need this type of care, you’ll come in for clinic visits until you improve or your condition stabilizes. Then TTC will discharge you and help move your care back to your local physician. When this happens, you will also go back to having appointments with LTFU.
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.
There are many resources online for learning about blood and marrow transplant (BMT). Health educators at the Seattle Cancer Care Alliance (SCCA) Patient and Family Resource Center have put together a list of trusted sources to help you get started.
Whether you are newly diagnosed, going through treatment or know someone with cancer, our staff can offer personalized resources for you and answer questions about support options in the community.
The Fred Hutch LTFU website also provides information and resources on our LTFU Program as well as other support.
The National Marrow Donor Program’s website, Be the Match, has many articles, videos and other resources for patients and caregivers about BMT, including this article on chronic GVHD. Information is available in Spanish, too. From the National Marrow Donor Program (NMDP).
See information and a video about lung problems that can happen after transplant, what you can do, risk factors and treatment options. From the Blood & Marrow Transplant Information Network (BMT InfoNet).
An excellent resource about possible changes and challenges to your physical, sexual and emotional health. From Be the Match, the National Marrow Donor Program (NMDP) website.
Learn why dental problems happen and what you can do to help prevent them or manage existing issues. From the National Cancer Institute (NCI).
Find out what peripheral neuropathy is, as well as both drug and non-drug therapies that can be used to treat it. You can also watch a video on how to manage peripheral neuropathy after a BMT. From the Blood & Marrow Transplant Information Network (BMT InfoNet).