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Old Mon Apr 11, 2016, 11:10 AM
bailie bailie is offline
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Join Date: Dec 2013
Location: McMinnville,OR
Posts: 825
I think it helped that I was totally prepared when I had my one appointment. I had a stack (about 4" high) of all my relevant appointments in chronological order and categorized. This information included all of my pulmonary function tests, original diagnosis, one lung resection and all tests after my initial diagnosis. The appointment lasted about 40 minutes. The doctor clearly explained that the appointment was not for any medical advice, but to send to headquarters the necessary information to determine my reason for classification. The "triggering" information was naturally the presumed exposure to Agent Orange in Vietnam, a stem cell transplant, 19 cycles of Vidaza, less than great pulmonary function tests and the fact that I have never smoked and relapse after stem cell transplant. The SCT was the primary reason for my assigned disability but the other supporting data greatly contributed. There all different levels/conditions of MDS that makes it difficult for the VA to use a blanket judgment for everyone with MDS. I was given about seven months to live with my original diagnosis (RAEB-2). Some people live for many years with some forms of MDS.

I still think (my layman opinion) that it is very doubtful that Agent Orange was the reason for my MDS. Exposure to Agent Orange can sometimes cause genetic abnormalities, but so can the hundreds of other chemicals that a person can be routinely exposed during their lifetime. Just this morning on the news it was reported that BPA (cancer causing) has been used in almost all canned foods in the packaging process (100 percent of Campbell's Soups) for the last few decades. I am in contact with most of the people in my Vietnam unit and I am the only person affected with MDS that anyone is aware. Unfortunately, I have had four friends diagnosed with MDS in the last three years. None were in Vietnam. One did smoke until age 45. We all had dissimilar backgrounds. There are so many reasons/exposures that can cause MDS that it is pretty much impossible to narrow the cause to perhaps exposure to Agent Orange. I think it is very generous of the VA to award me this disability.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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