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Hi Dee
I guess that Dr. Young wants to try Danazol because he has seen some good results from other people with TERC mutation. My counts from Nov. were: wbc 3.09, rbc 2.29, hgb 8.4, hct 24.9, platelets 61, and he didn't say anything about how my marrow looked this time. After my visit, I needed my first transfusion in Dec, of course my counts went up, but are starting to go down again. My January labs were: wbc 2.8, hgb 9.8, hct 27.9, platelets 62, anc 0.7. My Dad and his Dad both died in their 40's, and Dr. Young thinks they might have had the same mutation, since they both died with liver, blood, and lung problems. My mom and daughter were both tested, both negative, thank goodness. How is your nutrition? Have you read any books by people that have beat cancer? That's what I'm trying to go by...
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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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