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Old Tue Apr 17, 2012, 04:25 AM
Hopez2 Hopez2 is offline
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Join Date: Aug 2010
Location: New Jersey
Posts: 17
Scared of What the Future May Hold

My husband was diagnosed with MDS at the age of 32. It progressed to AML within months. A BMT was needed immediately with the speed of the onset of the disease; plus he had 3 cytogenetics. Post-transplant was tough. He never got to feeling actually good. He had some decent days, but never great ones. He relapsed at a year and had a second dose of his donor cells - a mini transplant (I forget the actual term). That was in Oct. He almost died from GVHD this time, but the Dr's saved his life. However, he has not had any quality of life since; he sleeps 22 hrs out of the day. I just found out that they found 1 cell with the abnormal chromosomes in the 6 month biopsy which means that the Leukemia is back.
They have told me that they can not cure him and are starting him on decitabine to help prolong his life. I am scared of how the next few months will play out. They told me he will not have much more of a quality of life than he does now, but with leukemia patients, do they normally die from the disease or other complications caused by the disease, i.e. heart, lungs, etc..
Any experience that anyone has had would be extremely helpful.

Thanks,
Hope
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