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.
2020 Blood and Marrow Transplant Reunion: Celebrating Patients 5+ Years Past Transplant
Friday, July 17, and Saturday, July 18, 2020
Fred Hutch Campus and surrounding Seattle locations
We are excited to welcome you and your loved ones to campus to reconnect with your care teams and other survivors, hear about successes achieved in blood stem cell and marrow transplantation, discuss challenges people face post-transplant and — most of all — to celebrate with you.
The weekend’s activities include a welcome reception at Fred Hutch, educational workshops and an evening celebration on the shores of South Lake Union. We will also honor Dr. Mary Flowers for her more than 40 years as director of the Long-Term Follow-Up Clinical 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.
Questions?
Visit fredhutch.org/reunion
206.667.1028 | bmtreunion@fredhutch.org
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 from 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.
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.
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
Information for Physicians
We offer guidelines for doctors with patients who’ve received a hematopoietic stem cell transplant from Fred Hutch/SCCA.
Patients can find resources for general long-term care and dietary guidelines related to cancer diagnoses and post-transplant care.
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
- Patient Comments
- More (2)
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.
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