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#1
Sat Jun 25, 2016, 04:11 PM
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Happy 3rd re-Birthday to me
Today is my 3rd re-birthday from a SCT for MDS thanks to my wonderful donor. I hope I get a chance to thank him someday. The past 3 years have not been easy. Main problems have been fatigue & depression. I have been very fortunate to not have any problems with GVHD. I am finally beginning to feel like my old self again. So to all of you just starting on this journey, hang in there, it does get better. God is good and I know that my faith and the prayers of friends and family helped me get this far.
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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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#2
Mon Jun 27, 2016, 08:41 AM
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Vickij,
Congratulations on your 3rd re-birthday! It is great to hear that you are both disease free and cGVHD free this far out from transplant. It gives me hope. It is also great to hear that you are beginning to get back your energy, as fatigue has been one of my nemeses. Dan
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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
Mon Jun 27, 2016, 09:06 AM
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Hi Vickij - Congratulations on your 3 year re-birthday!!
Not being quite a year out yet from my transplant- its inspiring to hear stories of others who are still plugging away at life years after transplant. Sorry its been difficult for you - but great you don't have GVHD. Fatigue and depression often go hand in hand and can be difficult - sounds like you are able to draw strength from your faith and loved ones - which should help you through dark times. Hopefully as you gain strength and energy you will fell less depression. For me, the transplant experience is a big lesson in learning patience. I had been prone to mild depression most of my life - Now when I find myself thinking negative thoughts and on the brink of despair I remind myself of all the people who helped me through the transplant - from my donor, doctors, nurses and family to people I hardly knew who have told me they were praying for me -it helps change my focus from sadness to gratitude - Stay well and stay strong. You'll be in my prayers. Best wishes, Paul
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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#4
Tue Jun 28, 2016, 10:11 PM
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Congratulations, Vicki J. Great that you're emerging from the fatigue and depression. God bless you and give you long life!
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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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#5
Wed Jun 29, 2016, 11:48 AM
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Hi Vickij. We are all glad to hear that you are mostly doing well. I had a STC for PNH in Dec 2011. I have had some GVHD and a few other issues along the way, but I would do it all over again. I too had a MUD donor who I have never met or communicated with. By that I mean that he never replied to my letter that I sent. I was told only that he was 27, had type O blood, (diff than mine), and lived in the U.S. Like you, I have some fatigue every now and then but it seems like it is less than it was in the last few years. I hope that you continue to improve and are able to work through any issues.
Mario
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MARIO, 52, DIAG IN 2011 W/ PNH, MUD IN DEC 2011. MINI TRANS PSL DENVER/ SOME MILD GVHD. CURRENTLY TAKING JAKAFI FOR GVHD.
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#6
Wed Jun 29, 2016, 01:41 PM
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Congratulations vickij!
Quote:
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Kathie - 54 yr old mother of 4, pancytopenia since 11/2014, moderate AA 8/2016, small PNH clone (now increasing), monitor bloodwork every three months
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