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  #1  
Old Thu Dec 1, 2011, 05:42 PM
aprilgrape72 aprilgrape72 is offline
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Join Date: Dec 2011
Location: Mims, Fla USA
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Unhappy When a BMT stops working.

Hi there. My name is April. I have serious AA. I've already had a bone marrow transplant . My Mom was my doner. But as of the last past 2year's, the BMT just quit working. My Doc told Me that My AA is back for sure. He went to get a bi-opsy, but couldn't get a good sample of My bone marrow.He said it's dried up? Tapped out? He dug in My back 4 time's! NEVER AGAIN, I said. Now that the AA came back, I just don't know what to do. My Doc is keeping me alive with blood, nupigin and platelets. I just know there's something out there that can make Me better again. Some drug, or another bone marrow transplant? Maybe a new Doc? Anyway, I'm looking forward to meeting other people with AA. So please, feedback, advise, and Friend's wanted. Thank You for Your time, Always, April
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  #2  
Old Fri Dec 2, 2011, 05:42 PM
DanL DanL is offline
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Join Date: Dec 2010
Location: Denver, CO
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since nobody else has responded, i thought i would take a shot. if you are not getting what you need from your current team, it may be time to find a new one, or at least get 2nd or 3rd opinions. with aa, there are several drug treatment options available. also, i have seen a couple of forum members who went through a second transplant with success. don't give up, and remember that you are frequently your best advocate when it comes to getting medical care.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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  #3  
Old Fri Dec 2, 2011, 07:16 PM
Greg H Greg H is offline
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Join Date: Sep 2010
Location: North Carolina
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i April (or Grape)!

Dan is right; you may need a second opinion. Have you had ATG in the past, before your transplant? That would seem like a reasonable option.

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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  #4  
Old Fri Dec 2, 2011, 10:21 PM
Lisa Z Lisa Z is offline
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Join Date: Nov 2008
Location: Ft. Washington, PA (Philadelphia area)
Posts: 111
I agree. Don't really know what part of FL you are in, but you need to be somewhere where there are AA experts, even if it means going out of state. Has your doctor tried to get you to be seen at the NIH? If not, you ought to push them to do that. And, maybe you do need a new team of docs to work with if they feel they are out of options. As others have said, there are many drugs out there that you likely have not tried yet. Work with an expert who will give you these options. Hang in there!
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Dx. 6/08 with AA, then changed shortly thereafter to MDS. Campath trial at NIH March '09 and have been transfussion independent since June '09
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