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MDS Myelodysplastic syndromes

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  #1  
Old Tue Apr 16, 2013, 05:24 PM
4bcsboys 4bcsboys is offline
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Location: Lincoln, DE
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Question How long a wait until a match for MUD?

I was told on March 8 that my AA is now MDS and a transplant is recommened. That day we drew my HLA labs. Less than two weeks later we found out that my only full sibling is not a match.

I know I really have not been waiting long. I really do know that. However . . . since finding out that my sister is not a match--at all--I wonder how long it will really take to find a donor. We are emotionally primed for June, as that is when we planned for IF my sister could donate, but she can't. I was told by the nurse navigator that my preliminary match was very good and she was requesting labs from several potential donors. I'm just starting to get antsy and want to make plans . . .
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Wife and mother of three young boys, diagnosed at age 39 with AA 2007; treated with ATG and cyclosporine; progressed to MDS end of 2012; MUD on June 26, 2013.
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Old Tue Apr 16, 2013, 08:56 PM
sstewart09 sstewart09 is offline
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My husband got his within 2 months of dx. It was an international MUD.
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Samantha, wife of Joe age 34; diagnosed vsaa 2012; MUD BMT February 2013
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Old Wed Apr 17, 2013, 03:09 AM
MDSPerth MDSPerth is offline
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My partner was diagnosed with MDS in mid July 2012 and he was admitted for a MUD transplant on 27 March 2013 for conditioning treatment with transplant on 4 April. Today is day +13 and he is setting all records with his progress and looks like he will be ready for release on day +16.

I would be more worried with them finding the best match possible more than the speed of the transplant.
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Sandi, partner of Paul 62, diagnosed MDS Intermediate 2; July 2012. Pancytopenia, Cytogenetics -7 +8 Chromosomes. Low Blast cell count. Currently on EPO & G-CSF and having great response. MUD found will be admitted to Royal Perth Hospital 27 March 2013 to start SCT process.
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Old Wed Apr 17, 2013, 07:49 AM
4bcsboys 4bcsboys is offline
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I definitely agree on "the best match possible." I have just emotionally been "on hold " and need some more reference
points. Thanks y'all for the information.
MDSPerth, I'm glad that he is doing so well! Prayers for continued healing
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Wife and mother of three young boys, diagnosed at age 39 with AA 2007; treated with ATG and cyclosporine; progressed to MDS end of 2012; MUD on June 26, 2013.
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