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#1
Fri Oct 7, 2016, 12:24 PM
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Doing Ok...
Hi - Thanks everyone for your thoughts, prayers and concern. I'm still here!
I entered the hospital about a week before schedule with a fever and abdominal pains. Many bagfuls of antibiotics later the infection cleared up and I was able to get back on transplant schedule - my brother donated 10million stem cells (he was unable to donate last time due to coronary issues) - and the transplant went off as planned on Monday - it was nice for many reasons that he was able to donate this time. I had a reaction to one of the antibiotics and am left with very red, sometimes painful legs - along with edema probably associated with chemo - so i'm a bit uncomfortable, but so far still very much alive. I really appreciate everyones concern - hopefully my legion of new stem cells will engraft quickly and I'll get back on track. Relapsing is definitely humbling and generally to be avoided. Thanks again. p.
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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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#2
Fri Oct 7, 2016, 02:14 PM
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Thank you for the update Paul. It is interesting that so many of us understand exactly what you are experiencing at this time. It is hard to offer much more than you already know so hunker down and ride this out the best you can. I hope they caretakers can keep you comfortable and help you get as much sleep as possible.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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#3
Sat Oct 8, 2016, 09:38 PM
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It's great to hear from you, Paul. I've been checking almost every day since 21 Sep to see if there's news from you. I'm sorry to hear that you've had a rough time and hope that very soon you will experience full engraftment and be feeling much better.
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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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#4
Mon Oct 10, 2016, 01:35 AM
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Fingers crossed for a speedy and full recovery. Its great you still have the energy to keep people updated :-)
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Now 30yr old. Diagnosed AML dec 2015 (Most likely MDS prior). Trisomy 6. Runx1 mutation also. Had induction and consolidation chemo. Marrow failure ++ so SCT on 21st of March with MUD. Married with a 1yr old!
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#5
Tue Oct 11, 2016, 10:51 AM
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Hi Paul. Before having my transplant I spoke to a friend of a family member who had recently gone through a transplant for MDS, and he also had some complications along the way. No fun. My experience has mostly been good, but I still have some lingering GVHD, and I still have a few other issues. The whole transplant process is not an easy thing for anyone, and we are all wishing you a fast recovery.
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
Thu Oct 13, 2016, 12:42 AM
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You can do this ...
assume you are on the 8th floor at Sloan, although last time they were opening up another floor for transplants, but that does not matter.
Stay engaged and focus, or maybe not focus, on the next hour, use whatever drugs you need to get through the day. Or let your caregiver handle things, that is our role. Ativan was a nightly ritual, helped with sleep and also helped with eating, a few bites does help. Just heal and take a step forward!
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Debbie, wife of Mike age 58, diagnosed RAEB 2 April 2010. Initial blast count somewhere between 10-15% then 20% after two treatments of Dacogen. Completed induction therapy 8/2/2010. BMB 8/31/10 - 4% blasts. SCT 10/1/2010. Relapsed in 10/2014, second transplant from same donor on 12/31/2014.
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