Sept. 20, 2004 (Vol. 1, No. 3)
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/2004-09/

Dear Friends:

This issue of the newsletter focuses on the topic of chronic graft-vs.-host-disease (GVHD). As you may know, this complication has been one of the most challenging problems associated with allogeneic stem-cell transplantation. Approximately half of the calls LTFU receives from patients and their home town physicians are related to chronic GVHD. LTFU is working diligently with other transplant centers to improve the way chronic GVHD symptoms are described in order to help patients and their physicians better understand this problem. Results of this collaboration will improve our ability to predict the outcomes that can be expected for individual patients. We hope that this information will also be interesting to those of you who have not had this complication.

Sincerely,
Paul Martin, MD
Director, Long-Term Follow-Up


Frequently Asked Questions
1. Is any new therapy for treatment of chronic GVHD available?
Investigators at Fred Hutchinson have recently opened a new protocol for treatment of newly diagnosed chronic GVHD. This is a multi-center double-blind study involving the addition of mycophenolate mofetil (MMF) or placebo to the standard treatment of prednisone plus cyclosporine or tacrolimus.

Read more details at: http://www.fhcrc.org/clinical/ltfu/faqs/gvhd.html


2. How long can I expect to be treated for chronic GVHD?
Treatment of chronic GVHD usually lasts about 2.5 years. Some patients require treatment for shorter periods, while other require treatment for more than 5-10 years.

Read more detatils at: http://www.fhcrc.org/clinical/ltfu/faqs/gvhd.html


3. What are the side effects associated with the long-term use of prednisone?
Long-term treatment with high-dose prednisone is associated with complications. These complications may include avascular necrosis (a degeneration of the bones, often in the hips), glucose intolerance requiring the use of insulin, infections, hypertension (high blood pressure), weight gain, changes in body or face shape ("moon face"), cataracts, osteoporosis (decreased bone density), mood swings, problems with sleep, and slowing of growth in children.

Read more details at: http://www.fhcrc.org/clinical/ltfu/faqs/gvhd.html


Former Patient Profile
You never would know she experienced cancer
Captured between the covers of a thick blue binder, the memories of Alyson Looney's fight against acute lymphocytic leukemia echo in the copies of e-mails sent by her mother.

Read more about Alyson Looney at:
http://www.fhcrc.org/patient/patient_stories/alyson.html


Staff Profile
Always learning something new
Carina Moravec's job as a nurse practitioner with the LTFU Unit is the most interesting, challenging and satisfying one she's ever had.

Read more about Carina Moravec at:
http://www.fhcrc.org/clinical/ltfu/staff/moravec.html


Featured Readings
New thinking about GVHD
A fresh look at an old problem often yields new solutions. Scientists are finding this philosophy holds true for their efforts to combat graft-vs.-host disease.

Read more about GVHD at:
http://www.fhcrc.org/pubs/center_news/2004/aug19/sart1.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.

When: Every Thursday from noon to 1:00 pm
Where: Seattle Cancer Care Alliance (825 Eastlake Avenue East), room 23 on the 6th floor
Conference Call: To participate in the discussion via conference call, dial 1-620-584-8214. At the prompt, enter 19427#. You will be charged a long distance fee. If you need financial help, we can provide you with a phone card.
Questions? Contact Heather Lucas, LTFU Coordinator at (206) 288-1137

Contact Us
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.





The Fred Hutchinson Cancer Research Center, home of two 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. To find out more call the Patient Intake Office at (206) 288-1024.

The Seattle Cancer Care Alliance is a cancer-care partnership among Fred Hutchinson, UW Medicine and Children's Hospital and Regional Medical Center. Through the Alliance, patients have access to first-rate cancer care and the latest treatments and clinic trials available.

For information on Fred Hutchinson's privacy policy, go to:
http://www.fhcrc.org/termsofuse_privacypolicy.html

ISSN 1541-7433
Copyright 2004
Fred Hutchinson Cancer Research Center
P.O. Box 19024
Seattle, WA 98109-1024
www.fhcrc.org

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