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#1
Tue Oct 14, 2014, 12:19 AM
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I'm Sweet 16 (years since transplant)!
Dear Friends,
The 16th anniversary of my matched unrelated donor bone marrow transplant for MDS was October 6. While I try to post on that day to let you all know how I’m doing, this time I was off in Las Vegas working hard at a conference (and playing a little, too). Last year, on my 15th anniversary, my transplant doctor dismissed me as a patient (see my post). Since then I have continued to be impressed by the efforts of so many patients, families, and organizations that are actively spreading the word about bone marrow failure diseases and raising funds to support research that will ultimately bring us cures. Although I never like to hear that anyone has been diagnosed with aplastic anemia, MDS, or PNH, the publicity surrounding ABC’s Good Morning America co-host Robin Roberts’ transplant for MDS in 2012 and her subsequent recovery and return to work brought a lot of attention to our rare diseases. So have events like the AA&MDSIF’s Hope, Steps & A Cure walk/runs, which have been held in 11 cities, including Austin, Houston, Indianapolis, Los Angeles, Milwaukee, New Philadelphia (OH), Phoenix, South River, Spokane, San Antonio, and Washington DC. The world’s exposure to our cause will get a further boost on November 19th when the AA&MDSIF will be the featured charity on the Groupon Coupon website! Groupon Coupon will help us all by spreading awareness about bone marrow failure diseases and link visitors to the Foundation’s website. For every purchase of a Groupon Coupon on November 19, the AA&MDSIF will receive a portion of the proceeds. I am grateful to everyone who has helped me get to this milestone anniversary—family, friends, doctors, nurses and my very special bone marrow donor. But the fact that more than 650 new people have registered at Marrowforums in the past year, and that Marrowforums members have made over 4,800 new forum posts in that time, tells me that our work is not nearly done. I’m going to keep doing what I can to support the fight against bone marrow failure diseases, and I hope you will too. Regards to all, Ruth P.S. Thanks to those of you who posted this week in the thread for my 9th anniversary. I don’t know how that thread came up, but your kind words mean a lot to me no matter where they come from!
__________________
Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98 
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#2
Tue Oct 14, 2014, 06:05 AM
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So even bigger congratulations for your 16th, Ruth!
__________________
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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#3
Tue Oct 14, 2014, 07:56 AM
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Congratulations Ruth!!
__________________
Mother age 79, dx MDS RCMD low risk del 20q April 2013, no response to EPO, Danazol. pRBC tx dependent - 2 units every 3-4 weeks, exjade Dec 2013 - Mar2014, restarted Dec 2014
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#4
Wed Oct 15, 2014, 01:08 PM
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Congrats on your anniversary! I am almost 3 yrs for my MUD/BMT for PNH. I've had some GVHD but no other big problems. May we all be well.
Mario in Denver, CO
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#5
Wed Oct 15, 2014, 01:19 PM
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Congrats, and Many, Many, More...
All the Best, and may God Bless!!!
__________________
Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10  ; 5.5% blasts down to 3%, now 1% (post BMT)
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#6
Thu Oct 16, 2014, 05:51 AM
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Hey Whiz - What's happening with you at present? Are you still going to have another SCT?
__________________
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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#9
Sat Nov 15, 2014, 11:48 AM
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Happy Sweet 16 Ruth
__________________
Dena Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great
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