January 18, 2006 (Vol. 3, No. 1) The LTFU newsletter is sent quarterly to people who have undergone treatment through Fred Hutchinson Cancer Research Center's transplant program. Read this e-newsletter online at: http://www.fhcrc.org/about/pubs/enews/ltfu-enews/2006-01/ Dear Friends: In this edition of the LTFU Newsletter we are reporting on an important study of the long-term quality of life of adult patients who have had a bone marrow or stem cell transplant. The findings show that most patients who survive for 10 years after a transplant generally have good health. However, certain types of problems occurred more frequently among survivors than among individuals who did not have a transplant. The study has improved our understanding of the problems that patients can have long after a transplant. The knowledge gained will help provide realistic expectations for future patients and will help guide the direction of future research to prevent these problems. Best regards, Paul Martin, M.D. Director, Long-Term Follow-Up Frequently Asked Questions Muscle cramps and bone problems Q: What types of muscle and bone problems can be ongoing after transplant? A: Three common problems that can continue long after transplant are avascular necrosis (AVN), decrease in bone density (osteoporosis or osteopenia), and muscle cramps or spasms. Read more details at: http://www.fhcrc.org/science/clinical/ltfu/faqs/muscle_cramps.html#a Q: What is avascular necrosis (AVN)? A: Avascular necrosis is a condition where the blood-supply to bones is damaged, resulting in the death and collapse of boney tissue, usually near the joints. AVN is usually a result of the use of high-dose steroids such as prednisone for immunosuppression. Read more details at: http://www.fhcrc.org/science/clinical/ltfu/faqs/muscle_cramps.html#b Q: What are the symptoms of AVN? A: Transplant-related AVN occurs most frequently in the hips, but can occur in other joints as well. In the early stages, AVN might not cause any symptoms. As the disease progresses, however, pain in the joint may develop gradually. Read more details at: http://www.fhcrc.org/science/clinical/ltfu/faqs/muscle_cramps.html#c Q: What treatment is available for AVN? A: If diagnosed early, AVN may be treated with medications, range of motion exercise and reduced weight bearing to allow the joint to heal or prevent further damage. Most patients will eventually require more extensive treatment with surgery. Read more details at: http://www.fhcrc.org/science/clinical/ltfu/faqs/muscle_cramps.html#d Former Patient Profile How I spent my honeymoon in Seattle Tim and Tracy Smith share a running joke. "We say that our honeymoon was spent in a two-bedroom apartment in Seattle with my mom and dad and my brother," Tracy said. While Tim and Tracy can smile at the experience now, back then it was no laughing matter. Cancer threatened Tracy's life. For more information, go to: http://www.fhcrc.org/patient/patient_stories/tracy.html Staff Profile You can come 'home' again and again and again … Ask Colleen McKinnon her history with the Hutchinson Center and she laughs warmly before letting you know that although she started working here in 1977, she has since left and returned at least five times. Opportunities for adventure and family circumstances dictated her coming and going during the past 29 years, but the fact she always came back says something about this special place. For more information, go to: http://www.fhcrc.org/science/clinical/ltfu/staff/mckinnon.html Featured Readings Life 10 years later Survivors of stem-cell transplantation for blood cancers can expect to be nearly as healthy 10 years later as adults who have never had a transplant, according to a recent Hutchinson Center study. The study is the first of its kind to follow a large group of patients from before their transplant through the 10-year post-transplant period. For more information, go to: http://www.fhcrc.org/science/clinical/ltfu/news/article4.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 1-620-935-9555. At the prompt, enter 368333#. You will be charged a long-distance fee. If you need financial help, we can provide you with a phone card. Questions? Contact Noelle Meluskey at (206) 288-1137. 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. You are also welcome to subscribe to receive an electronic version of the newsletter via e-mail by visiting http://www.fhcrc.org/about/pubs/enews/ltfu-enews/index.html. 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