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#1
Mon Nov 12, 2012, 05:04 AM
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Suffering silently in my rainbows and glitter world
Changed
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27 year old female diagnosed MDS RCUD 2012, GATA2, multiple carcinomas in-situ, SCT 10/03/2013 @NIH, chronic GVHD starting 11/2015 Last edited by rainbows and glitter : Wed Mar 13, 2013 at 09:15 AM. 
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#2
Mon Nov 12, 2012, 05:07 AM
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Continued...
My mind
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27 year old female diagnosed MDS RCUD 2012, GATA2, multiple carcinomas in-situ, SCT 10/03/2013 @NIH, chronic GVHD starting 11/2015 Last edited by rainbows and glitter : Wed Mar 13, 2013 at 09:19 AM.
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#3
Mon Nov 12, 2012, 10:09 AM
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Rainbows
Wow you have been through the ringer. I think you have found a good place to post your frustrations. The bone marrow diseases have so many implications. I hope you can find some answers by going to the NIH. I personally have severe Aplastic anemia and was completely caught off guard with the sudden attack on my body. Good luck in your journey. You are in my thoughts and prayers. Scott
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#4
Mon Nov 12, 2012, 01:07 PM
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You have found a great site for support and information, and NIH is wonderful. I hope they will be able to diagnose and finally treat you after all you've been through. Best wishes and healing thoughts!
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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#5
Mon Nov 12, 2012, 09:54 PM
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I can't imagine going what you have been through. Thanks very much for sharing your story. Prayers coming your way for getting some answers soon.
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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