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Old Sun Aug 28, 2011, 04:56 PM
Robi1Knobi Robi1Knobi is offline
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Join Date: Mar 2007
Location: Austin, Texas USA
Posts: 98
Danazol for TERC mutation

Hi friends ). I just started a Danazol trial August 11th for my AA with TERC mutation, and pulmonary fibrosis. I haven't noticed any changes or felt any different. Dr. Scheinberg told me I am #1 out of 25 patients starting on the study. I hope to talk to some of you on here..Thanks, Linda
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Linda, 47 yo, married, mother of a teen, moderate AA w/ TERC mutation (2007 NIH), Pulmonary Fibrosis 2010, was on Danazol study (Aug 2011-2013 & restarted 9/14/15), last transfusion May 2011. On Promacta now. Needing a double lung and stem cell transplant.
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