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MDS Myelodysplastic syndromes

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Old Wed Feb 22, 2012, 06:11 PM
djopierce djopierce is offline
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Location: Maryland
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Need suggestions for Dr in Dallas, Tx

Hi, my father, age 69, was diagnosed with MDS in November. It has been a roller coaster ride, he just spent a month in the hospital with pneumonia after his first round of Vidaza. While there, they now tell us the Vidaza was wrong treatment because he has hypo plastic MDS. Was given cyclosporine in hospital as well as neupogen and danazol. Was finally released with an rx for the cyclosporine and home health nurse. After almost three weeks, he still did not have his cyclosporine because the doctor had to approve it or something with the insurance company. we relentlessly called the dr's office and pharmacy, both told us they were waiting for something from the other! Now, he has been hospitalized again because his red cells have fallen too low. Platelets are low too but not dropping as fast as they were before. He was off the cyclosporine too long i think. I am not sure his doctor is experienced with MDS and I don't feel that they care. We need some suggestions please for a treatment center in Dallas area. I would love to take him to MD Anderson, but he doesnt want to travel that far. He may have no choice soon.
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Dad-age 69, MDS RCMD, trisomy 8, diagnosed 12/13/2011, first round of Vidaza complete
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Old Wed Feb 22, 2012, 07:16 PM
triumphe64 triumphe64 is offline
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Join Date: Feb 2008
Location: Dallas, Texas
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Quote:
Originally Posted by djopierce View Post
Hi, my father, age 69, was diagnosed with MDS in November. It has been a roller coaster ride, he just spent a month in the hospital with pneumonia after his first round of Vidaza. While there, they now tell us the Vidaza was wrong treatment because he has hypo plastic MDS. Was given cyclosporine in hospital as well as neupogen and danazol. Was finally released with an rx for the cyclosporine and home health nurse. After almost three weeks, he still did not have his cyclosporine because the doctor had to approve it or something with the insurance company. we relentlessly called the dr's office and pharmacy, both told us they were waiting for something from the other! Now, he has been hospitalized again because his red cells have fallen too low. Platelets are low too but not dropping as fast as they were before. He was off the cyclosporine too long i think. I am not sure his doctor is experienced with MDS and I don't feel that they care. We need some suggestions please for a treatment center in Dallas area. I would love to take him to MD Anderson, but he doesnt want to travel that far. He may have no choice soon.
Doctor Collins will be speaking at the AAMDS patient conference in Dallas in September.

http://www.utsouthwestern.edu/fis/fa...t-collins.html
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Dallas, Texas - Age 78 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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