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#1
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donor list-match procedurres
I was just told by my cancer hospital team that only 30% of people waiting for transplants get matches. Is this true? I was also told that from now to New Year's is a bad time to need a donor as people are busy with holidays? Is this true? I found out after speaking to someone else, a request for 2 donor matches was made 3 weeks ago, but no response to date, is this typical? I was also told I was 8 of 8, what does that mean? The person giving me the information felt it was a good thing.
Thank heaven you are here. Major questions and little answers. I still need to satisfy my question of if the risks of transplant outweigh where I will be without a transplant.
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f68 MDS; abmt 1/12. ABO mismatch 11 mos. (70) transf. Ferr 3-5k. 8 phlebot. AGVHD to CGVHD. skin,eyes. lungs as of 10/13. muscle weakness &osteo long term steroids.photopheresis 2x wk as of 3-15.pred 20 eod,acyclovir, mepron, voriconazole, pantropazole, lisinopril, montelukast, anoro, azithromycin. |
#2
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I can't answer any of your questions on finding a match but you may want to explore what Johns Hopkins is doing regarding half match transplants. They are having good success with them. Here's the thread on it:
http://forums.marrowforums.org/showthread.php?t=2250
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K. |
#3
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I suggest that you ask to speak to the person at your treatment center who manages donor searches and coordinates with the NMDP. They should be able to fill you in about where you are in the process of identifying potential matches. The physicians are not the ones who manage the process so you want a more direct source of information. |
#4
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Thank you for your response and thank you for the website. Your answer poses more questions as I was speaking with the donor coordinator. She said she wished there was an easier way by computer! When I questioned the transplant dr. originally about cord transplant, she said I was too big, that there would have to be more than 1 cord, and they did not use them on adults. Is this not true?
I still don't know based on my diagnoses if a transplant is the only way to go. My primary Oncologist-Hemotologist said I was RAEB-1 (with fibrosis) but classified ISS-2. He said his main concern is on July 2010 my blood was fine ( as always had been) and on July 2011, all blood cells were very low, and dropping. I am ready to have someone provide a second opinion who is known to be very knowledgable in the field of MDS. Can anyone recommend someone in or about the tri state area? I live on Long Island but would travel to Boston or Maryland if I could get a competitent evaluation. Again thank you, Donna
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f68 MDS; abmt 1/12. ABO mismatch 11 mos. (70) transf. Ferr 3-5k. 8 phlebot. AGVHD to CGVHD. skin,eyes. lungs as of 10/13. muscle weakness &osteo long term steroids.photopheresis 2x wk as of 3-15.pred 20 eod,acyclovir, mepron, voriconazole, pantropazole, lisinopril, montelukast, anoro, azithromycin. |
#5
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Sloan-Kettering in New York, Dana Farber in Boston, and Johns Hopkins in Baltimore are all top notch facilities. I had my BMT at Hopkins last year. My doctor was Richard J. Jones, the department chair. I believe Dr. Steven Gore is the resident expert on MDS there. I'm sure others in these forums can recommend specialists at the other locales. I recommend consultations with all three centers. Transplant is a difficult decision, and each facility has its own protocols. Find the one that feels like the bet fit for you.
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com |
#6
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With cord blood you don't need as close a match between the patient and the donor as with bone marrow or stem cell transplants, which is why it's often possible to find multiple cord blood units with a good enough match. It's still true that the closer the match, the better. |
#7
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Again, thank you all. I will pursue the 2nd opinion and ask additional questions regarding a donor. Going in for blood transfusion tomorrow (3rd one and had day 5 of 2nd round of vidaza today). Trying to maintain a full time job through all this!
__________________
f68 MDS; abmt 1/12. ABO mismatch 11 mos. (70) transf. Ferr 3-5k. 8 phlebot. AGVHD to CGVHD. skin,eyes. lungs as of 10/13. muscle weakness &osteo long term steroids.photopheresis 2x wk as of 3-15.pred 20 eod,acyclovir, mepron, voriconazole, pantropazole, lisinopril, montelukast, anoro, azithromycin. |
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