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Old Sun Nov 13, 2011, 01:50 PM
TheBirthofLove TheBirthofLove is offline
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Join Date: Mar 2011
Location: South Florida
Posts: 8
Mom had allo-SCT to treat secondary MDS (RAEB1). Relapsed at 60 days and now has AML

Hi everyone,


My mom was diagnosed with MDS back in August, 2010. She had RAEB-1. Her MDS was secondary to her original cancer. She had stage IV bartholin gland cancer, which she managed to beat. She did a round of Revlimid and that failed. Her blasts were 8% at that point. Then she did a few cycles of vidaza and she responded pretty well to that. Her blasts were still the same, but her counts came back up and she was no longer transfusion-dependant. We decided to pursue a BMT at Moffitt. She got a perfect match with an unrelated donor. She tolerated the conditioning very well. She engrafted and her counts came back into the normal range. Her first bone marrow biopsy looked good, but there were still two bad chromosomes in the marrow. She had acute GVHD of the gut and still does. Suddenly, her counts started dropping, so they did another bone marrow biopsy last week (about day 60 post transplant). We were called in for an emergency meeting with the doctor a couple of days ago. There we were informed that her transplant had failed. She now had 39% blasts in her marrow and had relapsed and now had AML!


As you can imagine, we are completely devestated. Because she relapsed so soon after transplant, we were informed that her prognosis is extremely poor. Secondary MDS is notoriously harder to treat and more aggressive. She is only 62. We were told she could try vidaza or go for a month of in-patient chemotherapy in the hospital. We were also given the choice of doing nothing. BUT, whether she receives treatment or not, the outcome is pretty much the same. Due to the various factors affecting her disease, we were told her prognosis is months to a year at best. It was completely unexpected and shocking. She chose to go on the vidaza anyway since she had been on it before and it can't hurt, but the docs do not expect it to help. She doesn't want to spend a month in the hospital at this point and frankly, I really can't blame her.


I don't really know what I am looking for here. I am totally at a loss. I never really considered that the transplant could fail...and this soon...and with such dramatic, tragic results. It's heartbreaking...
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