May 19, 2004 (Vol. 1, No. 2)
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/2004-05/

Dear Friends:

Many of you are familiar with our annual LTFU Patient Health Questionnaire where we invite you to comment on a variety of topics. Frequently, we hear that you don't feel the need to respond to the questionnaire if you don't have health problems. However, it is important that we hear from all of you — problems or no problems. Your comments help us to better understand the effects of transplantation and other therapies by comparing patients who have problems with patients who don't. This allows us to develop viable solutions. For this reason, it's important that we hear from as many of our former patients as possible, regardless of your current health. We appreciate you taking the time to fill out these questionnaires.

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


Frequently Asked Questions
1. Will exercise help the long-term effects of my treatment?
Yes, most people benefit from some form of physical activity, during treatment and in early recovery. Exercise reduces fatigue and pain, improves mental and physical stamina, reduces stress, controls weight, prevents heart disease and improves overall quality of life.

Read more details at: http://www.fhcrc.org/clinical/ltfu/faqs/exercise_nutrition.html#a


2. What is the right exercise program for me?
The right exercise program is one that starts slowly and gradually increases in time and intensity. Your muscles will tell you when you need to slow down and rest.

Read more detatils at: http://www.fhcrc.org/clinical/ltfu/faqs/exercise_nutrition.html#b


3. Should I take extra vitamins and minerals because of the treatment I had?
We recommend vitamin supplements (without iron) for the first year after transplant. Immunosuppressed individuals need to be careful about the kinds of supplements they take.

Read more details at: http://www.fhcrc.org/clinical/ltfu/faqs/exercise_nutrition.html#c


4. Since my treatment, I sometimes don't feel like eating. What can I do to ensure that I am getting proper nutrition?
One recommendation is to try eating small, frequent meals and snacks every one to two hours. Another recommendation is to keep high-protein, high-calorie snacks and foods handy to eat when you are hungry.

Read more details at: http://www.fhcrc.org/clinical/ltfu/faqs/exercise_nutrition.html#d


Former Patient Profile
Her focus is on getting back on track
After Hodgkin's disease turned her first three years of high school into a fight for life, Sara Shuckhart can finally focus on getting a life. Sara, an 18-year-old senior at Curtis High School in University Place, Wash., owes her fresh start — and a restored future — to the bone-marrow transplant she received from Fred Hutchinson Cancer Research Center at the Seattle Cancer Care Alliance (SCCA). The SCCA is the patient-care clinic for Fred Hutchinson, UW Medicine and Children's Hospital and Regional Medical Center.

Read more about Sara Shuckhart at:
http://www.fhcrc.org/patient/patient_stories/sara.html


Staff Profile
Dedication to patients long after transplantation makes a difference
Dr. Mary Flowers leads a team at Fred Hutchinson and the Seattle Cancer Care Alliance (SCCA) that continues to care for adult patients long after they return home. She delights in seeing patients as they return for checkups and visits — some of them 20 years or more after their transplants. "I'm thrilled at seeing these people, knowing that they wouldn't be here without a transplant," said Flowers. "Going through a transplant changes a person's perspective about life in a profound way, and that's an inspiring thing to see."

Read more about Dr. Mary Flowers at:
http://www.fhcrc.org/clinical/ltfu/staff/flowers.html


Featured Readings
Approaching 'normal'
After a months-long stay in Seattle for a bone-marrow or stem-cell transplant, most patients long for the day that they will head home to a "normal" life, free of daily clinic visits, pills and blood tests. Yet even when treatment is successful, re-entry into former routines and family life can leave some transplant survivors questioning just what a normal life really means.

For more information, go to:
http://www.fhcrc.org/pubs/center_news/2004/may6/sart4.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

For more information, go to:
http://www.fhcrc.org/clinical/ltfu/brown_bag.html


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.



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