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Old Tue Jun 4, 2013, 12:21 PM
Robi1Knobi Robi1Knobi is offline
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Join Date: Mar 2007
Location: Austin, Texas USA
Posts: 98
Smile Weaning after August visit to NIH

I was told that they will start weaning my Danazol dose after my August visit. I don't know about everyone else, but since I've been feeling so great, I worked my butt off & paid off my credit card debt this last 2 years, also fixing our house so if I do get sick, we could sell it and get into a house that my husband can afford on his income alone. I know ya'll know what's important now, and a big house and car payment ISN'T it. I hope ya'll have been enjoying the freedom from transfusions, and almost feel like your old selves, I know I do...
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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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