               |
Your Turn... (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 am fighting ovarian cancer and have almost unbearable neuropathy. I’d like to hear from anyone who has experience with any treatment which worked for the neuropathy.” S.D.. “I was a bone marrow donor for my brother who passed away. I am experiencing depression and would like to talk with other bone marrow donors who faced similar emotional problems.” L.F.. “I am a 29-year-old female with myelodysplastic syndrome (MDS) who needs a bone marrow transplant. My two sisters do not match me at all, but a 7/8 match has been found in the NMDP database. I would like to hear from young adults who have had a successful transplant using marrow from an unrelated mismatched donor. I would also like to hear from young adults with MDS.” S.Z., email:PeteZagar@aol.com. “I want families to understand that you can turn NOs into YESes! My Dad’s diagnosis was multiple myeloma and his doctors scheduled a stem cell transplant. The insurance carrier said ‘No,’ the procedure was experimental. We spent eight weeks fighting this decision. We received help from attorneys, our State Representative, the Secretary of State and publicized our family’s plight on talk radio, TV and in the newspapers. Finally our family’s & friends’ prayers and perserverance paid off—we are getting the stem cell transplant! Publicize yourself and fight for your needs! Our eight weeks were exhausting but well worth it.” C.K.. “I am 50 years old—and there IS LIFE after a BMT! I had an unrelated BMT in 1994 for CML. I may have changed my standard for what is ‘normal,’ but I know ‘normal’ people who can’t do what I do. I’d like to hear from others who have had ongoing difficulty digesting fats, fried or spicy foods, garlic, onions, etc. after a BMT.” N.T. “My 16-year-old son will have a tandem transplant for Hodgkin’s disease. We’d like to hear from others who have had a similar experience.” S.H. “I am on total disability due to chronic pain following 28 years of treatment for Hodgkin’s disease. I would like to hear from others with chronic pain to learn how they are dealing with it.” R.R., email:rroszko@ibm.net. “My 8-month-old godson will have a cord blood transplant for SCID (Severe Combined Immunodeficiency). We would like to hear from others who’ve undergone similar treatment.” S.S., email:sersol@mail.udg.mx. “We’d like to hear from anyone whose infant had a BMT for severe aplastic anemia. Our son Richie is 18 months old.” R&J B., email:www.RichieB.com. “I would appreciate hearing from anyone who has had avascular necrosis or an ankle replacement or fusion following a BMT.” L.S. “I would like to hear from other patients who got GVHD the same week that they stopped taking cyclosporine. I’m interested in what treatment they underwent, and how long they had to remain on it.” W.W.,email:Jackie@wolfenet.com. “I’m a 39-year-old female who underwent a BMT for AML in 1986. I’d like to hear from long-term survivors who experienced any of the following after their BMT: high cholesterol, hormonal problems, facial eczema, thin hair, nervous system problems or survivor guilt.” C.M., email:cinders1@ telusplanet.netl. “We would like to talk with anyone who relapsed within six months of undergoing high-dose chemotherapy and a stem cell transplant for breast cancer.” J&B F., email:Jfish781@aol.com . “I’d like to hear from anyone whose child was cured of Wiskott-Aldrich syndrome.” D.D.. “I’d like to hear from anyone whose breast cancer metastasized to the liver, or who had breast cancer followed by liver cancer.” D.R.. |
|
|
||
