Long-Term Follow-Up

Fred Hutch's Long-Term Follow-Up (LTFU) program provides life-long monitoring and care for patients following a bone-marrow or stem-cell transplant. Our services are provided through the Hutch and the Seattle Cancer Care Alliance (SCCA).

Fred Hutch physicians and researchers work in partnership with a patient's personal doctor to resolve medical problems and gather information for research. This information is used to develop improved strategies for preventing and treating the long-term effects of transplantation, and to educate patients about post-transplant problems.

Save The Date!

2020 Blood and Marrow Transplant Reunion: Celebrating Patients 5+ Years Past Transplant

Friday and Saturday, July 17 and 18
Fred Hutch Campus and surrounding Seattle locations

2015 Fred Hutch bone marrow transplant patient reunion
Transplant survivors and their loved ones register for the 2015 Bone Marrow Transplant Reunion, held at Fred Hutch in Seattle. Photo by Quinn Russell Brown


We look forward to welcoming you and your loved ones to campus to reconnect with your care teams and fellow survivors, hear from experts about past successes and the difficulties patients still face, and — most of all — celebrate with you. We will also honor Dr. Mary Flowers for her more than 40 years as director of the Long-Term Follow-Up Program.

Note: While we love celebrating the milestones of all our patients, this event is for patients who were transplanted at Fred Hutch before July 1, 2015. We look forward to celebrating with you after you pass your five-year transplant anniversary.

A formal invitation will be mailed soon. Room blocks will be available at nearby hotels.

Please sign up below to let us know how we can notify you when registration opens and create the best reunion possible.  

Sign Up Today to Receive More Reunion Information

LTFU Telemedicine Services

The LTFU Telemedicine team serves patients for life. Patients can call about routine post-transplant care or complications.

  • The service accepts calls from the patient or their service providers, Monday – Friday, 8:30 a.m. – 4 p.m. PST.
  • Patients can leave a voicemail message outside of business hours and may also email us or send us a fax at 800.376.8197.
  • For urgent, after-hours care, providers can call 206.606.7600 to speak with the BMT charge nurse.

Calls go through a brief intake process with a Patient Care Coordinator. They are returned by an LTFU Telemedicine RN after they have reviewed the patient’s transplant history and any recent clinical activity. Most calls are returned within 48 business hours, with priority being placed on more urgent matters. The RNs often request medical records (clinic notes, labs, current medication list, radiology reports and images, etc.), medical photographs and/or a completed GVHD Assessment and Scoring Form from the caller. Providing these items in a timely fashion will decrease the turnaround time. For inquiries requiring physician involvement, the RN will present the case during LTFU Telemedicine rounds on Tuesdays, Thursdays and Fridays. The LTFU attending physician will review available data and make recommendations.

Please note that the LTFU serves over 6,000 patients and we receive hundreds of pages of medical records patients each day. You must call, email or fax your inquiry with the medical records for it to be reviewed by a clinician. Medical records that arrive without an accompanying phone, email or faxed inquiry are filed in the patient’s LTFU chart without a clinician review.

Laura DiLella, a 30-year survivor of a bone marrow transplant, talks with Fred Appelbaum at Fred Hutch in Seattle.

Outpatient Long-Term Follow-Up Clinic

We see patients at both routine intervals and as needed for post-transplant complications. Patients receiving allogeneic (donor) transplants are asked to return to the SCCA one year after their transplant for special testing to review their progress and plan future care. For some types of problems, local patients and those willing to travel may return to the SCCA for specialized care, such as treatment for chronic graft-versus-host disease (GVHD).

Local doctors and advanced practice providers can call 206.667.4415 to discuss referring a patient for in-patient care at the LTFU clinic. Our team works with specialty providers for comprehensive, post-transplant outpatient care, and multiple appointments may be scheduled to meet the patient’s needs.

The Riddell Lab, part of the Clinical Research Division at Fred Hutch.

After returning to their primary care provider, patients can join the LTFU Research Program for as long as they’re willing to participate. Patients (and their doctors) are asked to complete an annual questionnaire on their transplant anniversary.

Collecting data from patients and their doctors, even decades after treatment, allows Fred Hutch researchers to learn about the long-term effects of transplantation and can help determine the best course of care for current and future patients. To ensure our research is complete, it’s important that patients without post-transplant problems also participate in this program.

“Most people think that because you are cured of your disease/disorder you are back to completely normal. They have no concept about the toll that it takes on your body!”

— Allogeneic transplant patient, 2008

A doctor examining a reclining patient

Information for Physicians

We offer guidelines for doctors with patients who’ve received a hematopoietic stem cell transplant from Fred Hutch/SCCA.

A woman and a man holding a t-shirt between them and smiling

Patients can find resources for general long-term care and dietary guidelines related to cancer diagnoses and post-transplant care.

Close-up image of lab work being conducted

Long-Term Follow-Up FAQ

We understand post-transplant patients and their families are braving new territory. Our 'frequently asked questions' section features queries we hear most, updated as patient inquiries change.

Newsletters

  • Transplant Patient Reunion
  • Taking a Look at Cognition
  • Quality of Life
  • Tailoring Websites to Survivors' Needs
  • A Positive Outlook and Cancer Recovery
  • Compiled Comments from Surveys
  • More (4)
Quality of Life
Tailoring Websites to Survivors' Needs
A Positive Outlook and Cancer Recovery
Compiled Comments from Surveys

The 8th Transplant Reunion will take place on July 17-18, 2020 at Fred Hutchinson Cancer Research Center. These reunions take place every 5 years. The theme of this reunion is “Where we’ve been, where we need to go” to celebrate the great successes of transplantation but also recognize the difficulties patients still face, whether just starting the transplant process or having it more than 40 years in the rear-view mirror.

Starting Summer 2018, a new secondary questionnaire focusing on cognition will be conducted. Also, for the first time study participants who completed the fatigue module from last year will receive personal results based on their responses.

This issue shares responses from 779 survey reponses from survivors on what both enhances their lives and disrupts their quality of life.

A new study helps patients navigate the stream of survivorship information with a customized, interactive website.

One key to a better life post transplant involves an intangible quality known as resilience.

For over 20 years, patients have been submitting LTFU questionnaires. Many patients have offered comments at the end of their questionnaire. Taken together, the comments show a patchwork of experiences. We selected comments that we thought were interesting and informative. Please note that while we’ve removed identifying information, we didn’t edit the quotes for content.

Contact Long-Term Follow-Up

Mailing address:

Long-Term Follow-Up Program
Fred Hutchinson Cancer Research Center
Mail Stop LF-240
PO Box 19024
Seattle, WA 98109-1024

Phone: 206.667.4415
Fax: 206.667.5619 or 800.376.8197
Last Modified, October 28, 2019