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Old Sat Nov 12, 2011, 07:38 PM
Robi1Knobi Robi1Knobi is offline
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Join Date: Mar 2007
Location: Austin, Texas USA
Posts: 98
Hi everyone!!

I'm so excited to see so many of us on here, going through the same thing. It makes me happy to know I'm not the only one...I can't tell you how much I appreciate ya'll reaching out & sharing your experiences with me too. I was actually the 1st person that started on the Danazol trial in August, guess I got there first! All 3 of my blood levels have been increasing, hgb 10.8, wbc 2.1, platelets 71. Side effects: increased migraine headaches (6 last month), a FEW extra chin hairs, increased energy & (ahem) sex drive, and a little weight gain (5 lbs). My local hematologist told me that I'd grow more hair, so I'm keeping my eye on Groupon for hair removal coupons! All of you that have TERC or TERT, are your parents that also carried the gene alive? My Dad and Grandfather both died in their 40's from liver cirrhosis, and I know my Dad had COPD, probably undiagnosed pulmonary fibrosis. Drinking & smoking didn't help, neither did being Irish, there was no luck involved (. Do you guys work? How do you stay healthy? I take Juice Plus plus juice on my days off, try to avoid foods that I think I have an allergy too (dairy). I want to get tested for antigen white blood cell food allergy tesing, but they don't do that at NIH, and its a $750 test. I think it'd be important to know if we are allergic to foods, so our immune systems don't have to work so hard. I haven't need a blood transfusion since May 2011. I use an incentive spirometer I got from work for my breathing, whenever I'm short of breath I use it and I cough & then its easier to breath. Love, 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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