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July 27, 2006
(Vol. 3,
No. 3) The LTFU newsletter is sent quarterly to people who have undergone treatment through Fred Hutchinson Cancer Research Center's transplant program. Dear Friend of LTFU: Nearly 4,000 individuals are now surviving after having a stem–cell or marrow transplant at the Hutchinson Center or SCCA. How do we keep track of these individuals who are scattered across all 50 states and 64 foreign countries? Most of you already know about our dedicated staff, but you might still appreciate the brief overview in this issue of the newsletter. Best regards, Paul Martin, M.D. Director, Long-Term Follow-Up Featured Readings LTFU leading the way The Long–Term Follow–Up Program is a model post–transplant support system for patients and doctors. For transplant patients and their care providers, some of the most important things that determine the success or failure of therapy come months or even a few years after the last bag of stem cells has been infused. Complications of stem–cell transplants are a fact of life for many patients and not just in the first three months after the transplant, once thought to be the most critical time. A survey published in 2000 of patients who had transplants for leukemia, lymphoma or myeloma between 1991 and 1997 showed they had an equivalent or higher mortality rate from three months to three years after transplant as compared to the first three months. For more information, go to:
Before and after What happens before and after a transplant is of particular interest to Dr. Stephanie Lee, who joined Fred Hutchinson Cancer Research Center last January. Those interests include survivorship issues, quality-of-life issues and the impact of graft vs. host disease; all of the issues related to getting people through the transplant procedure. For more information, go to:http://www.fhcrc.org/science/clinical/ltfu/staff/lee.html Former Patient Profile A Careful Game Plan Planning and persistence helps Ralph Russo beat non–Hodgkin's lymphoma. As a college athlete, Ralph Russo learned that success comes from good planning and paying attention to the details. "I've always been detail oriented and structured," Russo said. "I never felt comfortable going into this without proper planning." "This" was a lifesaving transplant at the Seattle Cancer Care Alliance in April 2004, the culmination of a long and well–planned course of treatment for non–Hodgkin's lymphoma. The journey took nine years to complete and brought the Lebanon, N. J., man and his family across the country more than once to prepare for the infusion of his own stem cells. For more information, go to:http://www.fhcrc.org/patient/patient_stories/ralph.html Frequently Asked Questions 1. How many patients have a stem–cell or marrow transplant at the Seattle Cancer Care Alliance (SCCA) each year? Approximately 400 patients have a transplant each year. About 150 have an autologous transplant using the patient's own stem or marrow cells, and the rest have an allogeneic transplant using cells from related or unrelated donors. 2. How many patients in the Seattle program are currently receiving treatment before a transplant or are recovering after a transplant? About 150 to 160 patients are in Seattle either getting ready for a transplant or recovering during the first several months after the procedure. 3. At any one time, how many doctors take care of these transplant patients? Patient care is directed by seven attending physicians, four in outpatient clinics at the SCCA, two at inpatient floors of the University of Washington Medical Center, and one at Children's Hospital and Regional Medical Center. 4. At any one time, how many other people are involved in taking care of transplant patients? Many people are involved. The list includes nurses, dieticians, physical therapists, consultant doctors, radiotherapists, pharmacists, chaplains, social workers, radiologists, pathologists, clinical care coordinators, clinic schedulers, receptionists, ward secretaries, laboratory workers and volunteers. 5. How many patients who had a stem–cell or marrow transplant at the Hutchinson Center or SCCA are still living? The total number of survivors increases each year and is now approaching 4,000. Read more details on statistics at: http://www.fhcrc.org/science/clinical/ltfu/faqs/stats.html Educational Events Brown Bag Discussion This group provides peer support and education to participants. All transplant and returning follow-up patients are welcome to attend and share their experiences. Participation can be in person or by conference call. A faculty member will join us one or two weeks a month to provide insight and education on various aspects of the transplant process. This group is co-facilitated by a clinical social worker and an LTFU nurse. Bring your lunch if pressed for time. Space is limited to 50 participants. When: Every Thursday, 12-1 p.m. Where: Seattle Cancer Care Alliance, 825 Eastlake Ave. E., Sixth Floor, Room 23 To participate in the discussion via conference call, dial 1-620-635-9555. At the prompt to enter a PIN number, enter 368333 followed by the # symbol. You will be charged a long-distance fee. If you need financial help, we can provide you with a phone card. Questions? Contact Long-Term Follow-Up at (206) 667-4415. If you have any medical or long-term follow-up questions, call (206) 667-4415. If you have comments or questions about the newsletter or would like to be added to or deleted from our mailing list, contact Kathy Erne at (206) 667-4745 or by e-mail at ltfunews@fhcrc.org. Fred Hutchinson Cancer Research Center, home of three Nobel laureates, is an independent, nonprofit research institution dedicated to the development and advancement of biomedical technology to eliminate cancer and other potentially fatal diseases. For information on Fred Hutchinson's privacy policy, go to: http://www.fhcrc.org/termsofuse_privacypolicy.html ISSN 1541-7177 Copyright 2006 Fred Hutchinson Cancer Research Center P.O. Box 19024 Seattle, WA 98109-1024 www.fhcrc.org |