Survivorship

Long-Term Follow-Up Program

The Long-Term Follow-Up (LTFU) Program at Fred Hutchinson Cancer Center is a lifelong resource 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. 

Bone marrow transplant The process of treating disease with high doses of chemotherapy, radiation therapy or both. Bone marrow or peripheral blood stem cells are given after treatment to help the body make more blood cells. The process of treating disease with high doses of chemotherapy, radiation therapy or both. Because this treatment destroys the bone marrow’s ability to produce blood cells, bone marrow or peripheral blood stem cells are given after treatment to help the body make more blood cells.
Clinical services

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.

Graft-versus-host disease A condition that occurs when donated stem cells or bone marrow (the graft) see the healthy tissues in the patient’s body (the host) as foreign and attack them.
LTFU Research Program

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.  

Clinical trials

If you are interested, we can also tell you about Fred Hutch clinical trials you may be eligible for. These studies are designed to help improve management of the after-effects of BMT and can help lower your risk of developing future cancers.

Frequently Asked Questions (FAQs)

When does long-term follow-up start?

Once you are discharged from the Blood and Marrow Transplant (BMT) Clinic you become part of the long-term follow-up program. Typically, patients are discharged one month after an autologous (using your own cells) transplant and three months after an allogeneic (donor) transplant. 

Why does long-term follow-up matter?

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. 

Bone marrow transplant The process of treating disease with high doses of chemotherapy, radiation therapy or both. Bone marrow or peripheral blood stem cells are given after treatment to help the body make more blood cells. The process of treating disease with high doses of chemotherapy, radiation therapy or both. Because this treatment destroys the bone marrow’s ability to produce blood cells, bone marrow or peripheral blood stem cells are given after treatment to help the body make more blood cells.
What complications can occur after BMT?

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 happen if you had an allogeneic (donor) transplant. Fred Hutch 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. 

Conditioning Treatments to prepare patients for stem cell transplantation. May include chemotherapy, monoclonal antibody therapy and radiation. The treatments used to prepare a patient for stem cell transplantation (a procedure in which a person receives blood stem cells, which make any type of blood cell). A conditioning regimen may include chemotherapy, monoclonal antibody therapy and radiation to the entire body. It helps make room in the patient’s bone marrow for new blood stem cells to grow; prevent the patient's body from rejecting the transplanted cells; and kill any cancer cells that are in the body. Graft-versus-host disease A condition that occurs when donated stem cells or bone marrow (the graft) see the healthy tissues in the patient’s body (the host) as foreign and attack them. Recurrence Cancer that has come back, usually after a period during which it could not be detected. It may come back to the same place as the original (primary) tumor or someplace else. Also called recurrent cancer.
After my BMT, when will I be ready to go home?

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 have a class 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) 

Sign In medicine, a sign is something found during a physical exam or from a laboratory test that shows that a person may have a condition or disease. In medicine, a sign is something found during a physical exam or from a laboratory test that shows that a person may have a condition or disease. Some examples of signs are fever, swelling, skin rash, high blood pressure and high blood glucose.
What is included in the LTFU Program?

Telephone consultations: The LTFU nurses provide telephone consultations for you and your physician. 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, specialized care at the LTFU Clinic on the sixth floor of the South Lake Union clinic. 

  • Most allogeneic (donor) transplant 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: Before you go home after your BMT you will have a long-term follow-up class led by a registered nurse (RN) that reviews:

  • 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)  
Bone marrow transplant The process of treating disease with high doses of chemotherapy, radiation therapy or both. Bone marrow or peripheral blood stem cells are given after treatment to help the body make more blood cells. The process of treating disease with high doses of chemotherapy, radiation therapy or both. Because this treatment destroys the bone marrow’s ability to produce blood cells, bone marrow or peripheral blood stem cells are given after treatment to help the body make more blood cells. Caregiver A person who gives care to people who need help, such as children, older people or patients who have chronic illnesses or disabilities. A person who gives care to people who need help taking care of themselves, such as children, older people or patients who have chronic illnesses or disabilities. Caregivers may be health professionals, family members, friends, social workers or members of the clergy. They may give care at home, in a hospital or in another health care setting. Sign In medicine, a sign is something found during a physical exam or from a laboratory test that shows that a person may have a condition or disease. In medicine, a sign is something found during a physical exam or from a laboratory test that shows that a person may have a condition or disease. Some examples of signs are fever, swelling, skin rash, high blood pressure and high blood glucose.
When do you check email?

During business hours, we check email throughout the day. If an email is received outside of operating hours (see below), our staff will check it the morning of the next business day, after we open at 8 am. 

Do you have voicemail?

Yes. Voicemail is available after hours. We also check messages throughout the day during business hours.

When will you get back to me, and how do you prioritize phone calls and email?

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 by the urgency of the problem. If your problem is not urgent, our BMT experts may discuss your case at the LTFU rounds, a meeting with the LTFU physician that happens three times a week.

Bone marrow transplant The process of treating disease with high doses of chemotherapy, radiation therapy or both. Bone marrow or peripheral blood stem cells are given after treatment to help the body make more blood cells. The process of treating disease with high doses of chemotherapy, radiation therapy or both. Because this treatment destroys the bone marrow’s ability to produce blood cells, bone marrow or peripheral blood stem cells are given after treatment to help the body make more blood cells.

Contact the LTFU Program

Hours: Monday–Friday, 8 am–4 pm
fax (206) 667-5619

Transitional Transplant Clinic

If you develop post-transplant complications, the BMT Clinic will continue to help you until you are ready to be discharged to your local physician. If you have recently been discharged from the BMT Clinic, but you are having certain post-transplant complications (such as 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 after their transplant. If you need this type of care, you’ll come in for clinic visits with the TTC team 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 LTFU as a resource. 

Bone marrow transplant The process of treating disease with high doses of chemotherapy, radiation therapy or both. Bone marrow or peripheral blood stem cells are given after treatment to help the body make more blood cells. The process of treating disease with high doses of chemotherapy, radiation therapy or both. Because this treatment destroys the bone marrow’s ability to produce blood cells, bone marrow or peripheral blood stem cells are given after treatment to help the body make more blood cells.

Resources 

There are many resources online for learning about blood and marrow transplant (BMT). Health educators at the Fred Hutch 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.  

Fred Hutch LTFU  
Fred Hutch LTFU  

The Fred Hutch LTFU website also provides information and resources on our LTFU Program as well as other support.

Chronic GVHD: Signs to Watch For
Chronic GVHD: Signs to Watch For

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). 

Managing Breathing Problems After Transplant
Managing Breathing Problems After Transplant

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).

Coping with Life After Transplant
Coping with Life After Transplant

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. 

Managing Oral Complications of High-Dose Chemotherapy and/or Stem Cell Transplant
Managing Oral Complications of High-Dose Chemotherapy and/or Stem Cell Transplant

Learn why dental problems happen and what you can do to help prevent them or manage existing issues. From the National Cancer Institute (NCI).

Peripheral Neuropathy
Peripheral Neuropathy

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).