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#1
Thu Oct 9, 2014, 06:42 PM
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Finding the "right" doc
Any ideas about how one would go about identifying a dr in the UPMC system who has shown insight in the treatment of MDS patients?
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Al, husband of Marie, dx Sept 2013, treated with epo, vidaza and revlimid with no response. Needs transfusion every 2 weeks. 
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#2
Fri Oct 10, 2014, 12:05 AM
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Quote:
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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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#3
Fri Oct 10, 2014, 12:18 AM
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Well, since the OP is from Pittsburgh, I'm guessing they mean the University of Pittsburgh Medical Center. If your own heme/onc doesn't know anyone there, you could always call the department, ask to speak to an RN, if they let you, and ask them who treats the most MDS patients in the group. They want to get patients to the correct physicians, in my experience. If that doesn't help, you could call the MDS Foundation and speak to the patient advocate. They know the doctors who specialize in MDS, and can steer you in the right direction.
Mags
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Margaret, age 68, dx MDS 5 q- 5/09- now RCMD; also MGUS. TP53 and TET2 mutations
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#4
Fri Oct 10, 2014, 01:00 PM
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You can also check with you insurance company. They may have a list of in-network physicians and their specialities.
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