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#1
Fri Jan 2, 2015, 11:08 AM
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Four years post BMT
Greetings all,
It's been awhile. Just wanted to report the good news that my 4 year checkup and bone marrow biopsy were all great. I have some issues with skin and eye GVHD but am doing very well otherwise. There are more detailed updates on my blog, http://mausmarrow.com, but all in all life is good! Happy New Year! Karen
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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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#2
Fri Jan 2, 2015, 01:10 PM
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It had been quite a while since we have seen an update from you Karen. This is great news. Congratulations on 4 years!
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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#3
Fri Jan 2, 2015, 02:56 PM
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Karen,
I'm glad you're doing well and past yet another milestone. I hope your eye condition will improve now that you're off steroid drops. My wife had to try a few types of eyedrops (prescription and over the counter) before finding what worked for her, but of course every case is different. Her eye problems were the results of the radiation she received, not GVHD.
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#4
Fri Jan 2, 2015, 04:58 PM
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Thanks, Neil! I've run the gamut of eye ointments and drops, both OTC and prescription, including special compounds, but I have high hopes for the scleral lenses.
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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
Sat Jan 3, 2015, 05:30 AM
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Yay! Well done, Karen. That's great news.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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#6
Thu Feb 5, 2015, 01:36 PM
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Congrats Karen. I am 3 yrs post trans for PNH. I have similar GVHD issues which are slowly improving. I had a MUD which I was told was the absolute best poss match that I could have. We all hope that you continue to do well.
Mario
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#7
Thu Feb 5, 2015, 08:08 PM
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Karen
Great news. Do you have a BMB every year ? I have a problem with dry eyes & dry mouth.
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62 yr old female. dx AA 3/12.treated with ATG 4/12.dx MDS 4/13. MUD BMT on June 25th,2013
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#8
Fri Feb 6, 2015, 03:25 PM
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Johns Hopkins does BMBs every year for the first 5 post transplant.
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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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