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Old Mon Dec 19, 2011, 10:25 PM
Greg H Greg H is offline
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Join Date: Sep 2010
Location: North Carolina
Posts: 660
Hi Erica!

It must be a serious drag to be in the hospital for so long while making what seems like no progress.

You started out by asking whether immunosuppressive therapy is a viable option for treating AA. I think you can tell from the responses so far that the answer is yes. But plenty of folks also choose transplant.

You've gotten great feedback from folks on the standard approach to ATG and cyclosporine, but I think we all could probably agree that kidney failure might be a good reason to stop the cyclosporine. And I don't think we can blame the good folks in the hematology wing at Wake for the fact that Andre's kidneys proved to be more sensitive to CSA than the kidneys of some other folks.

Your docs, by reintroducing the CSA and gradually increasing the dose, are hoping to see some response, without trashing Andre's kidneys again. That seems like a very sensible approach and exactly what needs to be done before resorting to more ATG or some other drug.

That said, I'll bet, if it can be done safely, given the infection risk, procuring a discharge for Andre and letting him sleep in his own bed for a while would do worlds' of good for his morale (and yours).

A couple of folks have mentioned the National Institutes of Health, whose docs are very well-respected experts on AA. One thing that you might not have picked up on is that, if you can obtain an appointment at NIH, it will cost you and your insurance company nothing. You'll have to get to Maryland, of course, and pay for a hotel, but any testing and consultation would be free of charge, because NIH is a taxpayer-supported research institution. It may be an option worth pursuing, given that your husband's case is proving a bit more challenging than some. If you're going to take that step, it would make a great deal of sense to do it before bring more ATG or any alternative.

Take care!

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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