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#26
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I have had 2 separate doctor's from different hospitals tell me that as well. They gave me a reason at the time, but it was a mute point for me because I had absolutely no response and my blood counts were getting worse. Multiple ATG and Campath do something to make transplants more difficult later on. I have read that as well. The AA/MDS International Foundation (www.aa/mds.org) touches on that if you look up Immunosuppressive Therapy and go to "Second ATG". I have seen it other places before. Having said that, I can't site you the medical reason why that is so, but I will continue to look. I also know that the more transfusions you have - the more antibodies you build up and that is more difficult for a transplant, too. Good Luck, Marian
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Marian , Dx 12/25/09 w/ hypoplastic myelodysplasia and 10% PNH clone. Dx changed to SAA in 1/10, treated w/ unsuccessful horse ATG and cyclosporine. Dx of unclassified MDS or acquired bone marrow failure, PNH clone 39% (after ATG). Due for BMT in Sept or Oct 2010. |
#27
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Experts!
Laura,
You are so right on the "experts." There is a great lecture here from a conference at the Fred Hutchinson Cancer Research Center up in Seattle. Actually, a lot of the presentations on that page are worthwhile, but the short one by Dr. Eilhu Estey is great for the perspective it offers on "Standard" treatments. His illustration is a 65 year-old person with high risk MDS. Normally, without MDS, this 65 year-old has 20 more years to live. With untreated high risk MDS, he's likely to die at 66, eliminating 95% of his standard life expectancy. If he takes the "standard course of therapy," i.e., Vidaza, he gets to live until 67, and only loses 90% of his life expectancy. Estey make the point that a year, in this case, is better than nothing -- but there's no way that the 9.5 months gained on average for Vidaza justifies calling it a "standard course of treatment." It makes sense, in that scenario, that some folks opt for non-standard treatment in clinical trials. Like me, thinking about Campath! Anyhow, it makes sense that the 8-month window between your ATG and transplant prep meant the ATG was a positive instead of a negative. I'm relatively low-risk, so I think my doc is more worried about a scenario in which I do ATG now, follow with cyclosporine, that works for a year or so, then I do a couple years of Vidaza, then I come for a transplant. The prior exposure to ATG across that longer window makes it less effective the second time around. At least that's her thinking. My transplant doc is at Wake Forest University. They are mostly into non-myeloablative (reduced intensity) transplants, particularly for the over-50 set. But my Doc has experience with the big-gun transplants as well, having spent some years at Stanford. Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com |
#28
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Hey Marian!
Hey Marian!
What you say makes perfect sense to me given what my doc has said. There's definitely some resistance or whatever that can build up to ATG. I've read about some folks not responding to horse ATG being switched to rabbit ATG or vice versa. My doc is also a little worried about the build-up of antibodies from multiple transfusions, particularly since I picked up my first one (as yet unidentified) last transfusion. Transplant is such a dicey deal in the best case that I think transplant docs tend to be pretty cautious folks about other pre-transplant treatment that can mess things up down the line. Looking at your sig line, looks like you've had a rough go of it in terms of diagnosis bouncing around and such. I wish you great luck with your impending transplant! Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com |
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