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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.) "My daughter had a BMT in April 1987. In January 1997 she had a little boy. He is now 20 months old and doing fine. I would like to hear from others who had children after a BMT." S.D., email: wfd@webtv.net "I had a peripheral blood stem cell transplant for inflammatory breast cancer in May 1997. In January 1998 I began having trouble producing platelets. My counts range from 20,000 to 35,000. I'm also having problems producing red and white cells, but it's not as much of a problem as the platelets. I'd like to hear from others who have had this problem, or have successful experience treating it." I.A., email: jack1@inetone.net "I wish to thank you for your timely help in sending the list of lawyers that could persuade our insurance company to cover my wife's stem cell transplant. I contacted one of the lawyers on the list, and within a week the problem was resolved. It was completely handled over the phone and the lawyer was very helpful." H.J. "I have a 38-year-old daughter who underwent a BMT with an unrelated donor in March 1996. She has had problems with the prednisone and Prograf used to control her chronic graft-versus-host disease (GVHD). She is considering a clinical trial that uses thalidomide to control GVHD. I would like to hear from anyone who has used thalidomide to control GVHD to learn about their experience with the drug and its side effects." A.C.,email: 102601.126@compuserve.com "I am a 32-year-old woman who underwent an allogenic BMT for CML in September 1996. I am now considering becoming pregnant using a donor egg and would very much like to hear from anyone who has gone through both a transplant and infertility treatments using donor eggs." E.G. "I'd like to talk to a parent whose child died of severe graft-versus-host disease following a BMT." S.C. "My 6-year-old nephew will have a bone marrow transplant in a few weeks. He has adrenoleukodystrophy. He will be transplanted with marrow from an unrelated donor. I, myself, was an unrelated donor for a 2-year-old girl with AML last year. This past Saturday I finally got to talk with her and she is doing well and is an absolutely delightful little girl. That phone call was one of the highlights of my life. I encourage everyone I can to sign up for the National Marrow Donor Program registry of unrelated donors." C.J. "I'd like to hear from anyone who has tried monoclonal antibodies for recurrent Hodgkin's disease, especially after a failed stem cell transplant." A.S., email:ajoysheene@yahoo.com "I was transfusion dependent when I met Elaine K. from Canada through this column. She had also been transfusion dependent post-transplant, but no longer needed transfusions after taking injections of Epoetin. My doctor tried the same treatment for me, and I am now down to one injection per week and do not need transfusions. If anyone wants to discuss this treatment, please contact me." B.D.,email: HOOPSMP @aol.com Editor's note: E. K. is willing to discuss this issue as well. She can be emailed at lanners@total.net "The doctor was busily flopping through my charts, reading rapidly, nodding his head affirmatively or saying 'M-mmm...,' after reading each page, moistening his fingers as he searched through for more pages. I couldn't stand the suspense any longer, so I said, 'Doctor, are you in a position to state my remission status?' He said 'Just a minute--I'm about to tell you, but I need to look at a few more reports.' Finally, he said, 'You are in complete remission.' "I had moisture in my eyes. This transplant road has been an arduous route and lately, though the M-level (a measure of the degree of myeloma by analysis of blood) has been low, doctors have used words like 'Excellent Partial Remission,' 'Near Complete Remission,' 'A Hair Away From Remission' and 'Very Close to Remission.' Now my bone marrow is clear of cancer cells and radiographic tests show no active bone lesions. "I am fortunate and thankful to be in this condition, four and one-third years following my second autologous transplant. My wish for anyone else who has multiple myeloma, or from anyone suffering from cancer, is that they come join us in expanding the list of survivors. For those who provide care for cancer patients, my wish is that your burden be lightened by the person in your care returning to independence and a better quality of life. I'm thankful for all the support that was provided to me while I was recovering." J.N. |
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