• KarenG_WN's Avatar

    Have you been helped (or will you be, of hope to be) by a bone marrow donor?

    Asked by KarenG_WN on Friday, February 17, 2012

    Have you been helped (or will you be, of hope to be) by a bone marrow donor?

    Would love to hear any/all experiences as this info might be helpful to someone else down the road or on the network today.

    4 Answers from the Community

    4 answers
    • Bashiemn's Avatar

      I did receive a bone marrow/bone biopsy and it doesn't appear that there is anything in the maturation or the cells in the bone marrow that is causing my cancer, so there is no talk about ever needing a transplant.

      I will be very happy to share my journey in case someone else is diagnosed with ALCL - I'll go post my experience now. :) Thanks for the encouragement. If I can help 1 person through my experience it will all be worth it.

      about 9 years ago
    • Jackie's Avatar

      My bone marrow donor was my brother. I have 2 sisters and 1 brother, and he was my only match. And, his bone marrow was the closest it could be to mine without being an identical twin. He was 15 when he donated his bone marrow to me - and i was 18 when I had a bone marrow transplant back in 1988 - when it was just on the verge of being no longer being considered experimental. I was diagnosed with acute myelogenous leukemia in 1987 and had 1 full year of chemo treatments. Then I relapsed and went for the transplant. Because of him, I am still here today! It was far from an easy road, but I made it. Although we are now grown with families of our own, my brother and I have a very special bond.

      about 9 years ago
    • po18guy's Avatar

      I was diagnosed in July, 2008 with stage 4B aggressive non-Hodgkin's Peripheral T-cell lymphoma of an unknown sub-type. Against poor odds, I achieved complete response to chemo, but immediately relapsed. It appeared that the only chance for me then was additional chemo, total body irradiation and a transplant. However, I have no immediate family and no matches could be located in the world registry of donors. To avoid receiving one final massive dose of chemo and best wishes before living out my last few months, I entered a clinical trial. It was an experimental novel therapy (HDAC inhibitor) and I again achieved complete response. My blood stem cells were collected in preparation for an autologous SCT. However, the trial drug that I was on was low toxicity and kept me in full response. My doctor is also involved in cancer research. He noted recent studies that tend to show that patients who remain in long-term response to novel therapies receive essentially the same benefit as an autologous SCT, but without the risks. So, it has been almost three years now and no transplant is planned. With relapse patients, an autologous SCT is not considered a cure in any event. So, the next two years will tell the story in my case. Yet, as my wife told me this past week, "Every day is Valentine's day for us."

      about 9 years ago
    • Camarillolaw's Avatar

      My daughter was diagnosed with a rare type of acute lymphoblastic leukemia (ALL) that affects infants (my daughter at 9 mts) and does not respond to standard chemotherapy, years later determined to be "mixed-lineage leukemia" (MLL) which carries a chromosomal translocation involving the mixed-lineage leukemia gene on chromosome 11. The survival rate at that time was about 10%, and I don't think this has improved. After a failed chemotherapy regimen, she received a cord blood BMT in 8/2000, one of the first cord blood transplants at the cancer center she was being treated at. Due to her age at the time of the transplant, 19 mts, being Hispanic, and that no donor could be found, cord blood was the only solution. While a transplant carries high risks, for many, including my daughter, it is the only therapy that is available. Without it, my daughter would not be celebrating her teenage years (13 yrs old at the moment) and giving more grey hairs.

      about 9 years ago

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