From BMT Newsletter January 1995 Issue # 27 - Donors - Some Very Special People Reprinted by NYSERNet with Permission from BMT Newsletter
(Readers: Please note that we have deleted the names, addresses and phone numbers of the people who have contributed their experiences and ideas to "Your Turn". However, we would be happy to direct you inquiry or communication to them. Please contact us through our email: help@bmtnews.org, by phone: 847.433.3313 / 1.888.597.7674, by fax 847.433.4599, or by mail: BMT Newsletter 2900 Skokie Valley Road, Suite B, Highland Park, Illinois 60035. Thank you.)
"I had a BMT for myelodysplasia in 1993 and am starting a BMT support group in the greater Raleigh-Durham area. If you are interested, contact: H.K."
"It's been two years since my ABMT for AML. I received high dose Busulfan and VP-16, and my bone marrow was purged. Has anyone else experienced the same slow hair growth that I am experiencing?" S.D.-H.
Georgia Vogelsang, M.D., of Johns Hopkins Oncology Center responds: There are several reasons hair might not grow back after BMT. Up to 10 percent of patients who receive Busulfan prior to the BMT have no or only partial hair regrowth. An active bacterial or fungal infection may also temporarily prevent hair regrowth. In some cases, graft-versus-host disease (GVHD) prevents hair regrowth or, more commonly, causes hair to fall out. Although GVHD is more common among allogeneic BMT patients, it occasionally occurs following an autologous BMT. Hair loss due to GVHD is usually reversible with the control of GVHD. If you have not had an infection or experienced symptoms of GVHD, your slow hair growth was probably caused by the Busulfan.
"Almost a year after our daughter's successful transplant, we can't help but think about other patients who are unable to find donors. When our children were tested they were not asked to consider volunteering for the National Marrow Donor Program Registry. We feel that family members who are being tested represent a promising source for enlarging the National Registry, in part because the costs are already paid for. What is needed is a sensitive method for encouraging this option as part of the testing procedure." A.G.
"I had an ABMT in October 1993 for CML, and now take interferon injections daily. I'd like to talk to others in a similar situation as well as persons who've had a second BMT or are thinking of having one. I am 27 years old." B.D.C.
"In 1991, after nine months of chemo, I underwent a BMT for Hodgkin's Disease. Shortly after, I began experiencing some memory loss, such as forgetting how to spell 'maybe' or how to write the letter 'G' in capital form. My neurologist can find no reason for my memory problems. If any readers have information about this, please contact me." D.C.
"My husband is 39 years old and has recently been diagnosed with myelodysplastic syndrome. We are in the preliminary stages of planning the BMT and would love to hear from people with a similar diagnosis to find out about their treatment and outcome from a BMT." P.B.
The electronic version of this document was created by NYSERNet, Inc. through a grant funded by the New York State Science and Technology Foundation as part of the Breast Cancer Information Clearinghouse.