Monday, January 24, 2005
Unique?
Here's the latest leukemia info. Sorry I've been so lax in updating.
About six weeks ago my idiot doctor FINALLY made the formal request for my donor search to proceed (about FOUR MONTHS LATE!!!!) and the people in Seattle immediately found four possible marrow donors. One is in the States, one in Spain and two in Italy. Makes me wonder what the hell my great-greats in eastern Europe were up to way back when. Couldn't resist a Latin lover it seems.
Today I talked with the coordinator and she says the one here has been fully tested and found to be an acceptable match, but not a very good one. The match is 8 of 10. She expects word from the others in about two weeks.
In the meantime I got puzzling but GREAT news from my doctor (see above). He says that since a marrow sample had shown some leukemic material after the chemo treatments he expected it to burn through me like a wildfire and that by this date I would be in desperate trouble indeed. This brand of AML (with 11,17 chromosome transposition rather than the ususal 15,17) is extremely virulent and it is unheard of for anyone to go this long without showing severe illness. On the contrary I'm feeling pretty good and my tests are all coming back negative - the latest only a week ago. He called me unique! That's the first time anyone's ever said that in a GOOD way. Woo-hoo!!!
So, I'm feeling pretty good (as long as I get two serious naps daily), there might be a donor available, and it appears that my immune system is either holding the cancer at bay or has killed it off entirely.
In light of this last part, my doctor wants to possibly defer the marrow transplant even if a perfect donor appears. A far more sensitive test for 11,17 AML is coming out in late summer and it makes sense to wait for that if possible.
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About six weeks ago my idiot doctor FINALLY made the formal request for my donor search to proceed (about FOUR MONTHS LATE!!!!) and the people in Seattle immediately found four possible marrow donors. One is in the States, one in Spain and two in Italy. Makes me wonder what the hell my great-greats in eastern Europe were up to way back when. Couldn't resist a Latin lover it seems.
Today I talked with the coordinator and she says the one here has been fully tested and found to be an acceptable match, but not a very good one. The match is 8 of 10. She expects word from the others in about two weeks.
In the meantime I got puzzling but GREAT news from my doctor (see above). He says that since a marrow sample had shown some leukemic material after the chemo treatments he expected it to burn through me like a wildfire and that by this date I would be in desperate trouble indeed. This brand of AML (with 11,17 chromosome transposition rather than the ususal 15,17) is extremely virulent and it is unheard of for anyone to go this long without showing severe illness. On the contrary I'm feeling pretty good and my tests are all coming back negative - the latest only a week ago. He called me unique! That's the first time anyone's ever said that in a GOOD way. Woo-hoo!!!
So, I'm feeling pretty good (as long as I get two serious naps daily), there might be a donor available, and it appears that my immune system is either holding the cancer at bay or has killed it off entirely.
In light of this last part, my doctor wants to possibly defer the marrow transplant even if a perfect donor appears. A far more sensitive test for 11,17 AML is coming out in late summer and it makes sense to wait for that if possible.
# posted by Bert Wiener @ 1/24/2005 01:51:00 PM 
