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MDS Myelodysplastic syndromes

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Old Thu Jun 28, 2012, 04:08 PM
PeppersMommy PeppersMommy is offline
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Join Date: Jun 2012
Location: Ontario, CA
Posts: 11
Looking for help for a 2nd opinion in Southern California

The appointment didnt go well. I provided the dr all the research I found on age not being a barrier for "mini stem cell" transplants. The dr said HE doesnt believe in them because 50% of the patients wont live through the procedure. So I asked the dr honestly how long does my Dad have left he said 6 months maybe 1 year. He followed that up with saying,"Im sorry to say it is a grim situation". I told him then the 50% chance sounds like great odds to me the dr again said HE doesnt believe in it. I felt like I was in a movie....surreal is all that comes to mind. Of course my Mom began to cry and my Dad had an empty look on his face.

Today I called the City of Hope in Duarte,CA for a 2nd opinion. My Dads ins will not cover it so I will rally the family because my Dad is NOT READY TO LAY DOWN AND DIE WITHOUT A FIGHT!!!

Does anyone know of another place in So Cal for a 2nd opinion?
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Leslie - Daughter of Wally Becker, 75 yrs old - MDS dx 2010.
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Old Thu Jun 28, 2012, 05:50 PM
triumphe64 triumphe64 is offline
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Join Date: Feb 2008
Location: Dallas, Texas
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Try Ron Paquette at UCLA.

http://www.uclahealth.org/body.cfm?i...etail&ref=9178

He is on the Medical Advisory Board at AAMDS.

http://www.aamds.org/get-involved/ab...advisory-board
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Dallas, Texas - Age 81 - 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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