Friday, April 13, 2007

unrelated donor search update

On Wednesday, after more than a week of unsuccessful attempts to reach her, I finally received a call back from Coleen, the unrelated donor coordinator at Weill Cornell, about my inquiries concerning the donor search that had been initiated there. Following my switch to Sloan-Kettering recently, I requested that the donor search be transferred there as well especially since as I mentioned in a previous post that two potential donors had been located and "locked in." Since these donors appeared to be so great, I didn't want to jeopardize losing them.

Well, it turns out the donor search undertaken at Weill Cornell was an informal one, not a formal search. This means that the two potential donor matches, who were located were not "locked in" as I was told when I first learned about the exciting news about one month ago. She had told me then that an 12/12 and an 11/12 match on the allele level had been found. They had notified the persons and as of now, they had consented to donate their stem cells and were told that the transplant would take place in mid-June. According to this description, I and everyone whom I told had the sense that this was formalized. What other conclusion could I possibly have? I mean, if the donors have consented and are aware of the transplant date, that seems pretty formal to me. But again, as I learned on Wednesday the unrelated donor search was still in its informal phase. It wasn't in the formal phase yet.

What does all this mean? Simply put, I'm back at the drawing board. Sloan has initiated a formal donor search. As of Thursday when I spoke to Sinda, the unrelated donor coordinator at Sloan, no one had been located as a possible match yet. Coleen told me that Weill Cornell and Sloan have different criteria as to whom they will transplant, even though we were told in our meetings at both institutions that they wouldn't transplant a patient with a unrelated donor of more than one antigen off. Su thinks she was speaking out of her ass. According to Coleen's reasoning, the two individuals found in her search might have proven (after future analysis) to be good enough of a match for transplantation at Weill Cornell but not so at Sloan, which she described as more conservative with regards to whom they'll transplant. Therefore, in accordance with Sloan's criteria those two individuals might not meet their requirements and therefore, would be passed in their NMDP search in which case hopefully a better donor match is located or cord blood is examined as an option.

I will continue to call Sinda every other week or so in order to find out about any possible news.


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