Thread: 2nd transplant?
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Old Fri Aug 19, 2016, 08:29 AM
PaulS PaulS is offline
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Join Date: Sep 2014
Location: New York
Posts: 247
Hi Bailie - glad to hear that you've been traveling - two weeks without internet, what a concept!

Yes, recent deaths are very sad. I still miss Tracy.

i had one round of Vidaza along with Veneteclex that I take daily. I'm set for another round in a couple of weeks. It seems likely at this point that a second transplant is inevitable - We don't want to wait until I get weaker or sic, my brother seems healthy enough to be the donor this time - and while the medications may have some impact on the course of the disease, it seems unlikely that it would cause a long term durable remission or cure - that said, nobody's ever tried this before in a relapsing MDS patient so there is perhaps a slight ray of hope. I understand the preliminary data treating patients with just MDS and the drug combination is promising - and maybe I can make some small contribution to medical science.

In the meantime I'm trying to prepare emotionally for another transplant.

The first transplant allowed me to recover sufficiently feel strong again - appreciate life and loved ones in a new and better way - go skiing, finish a renovation project on a beautiful inn in the Adirondacks, take my wife to the beach, attend my son's college graduation feeling strong and filled with pride - hope and love - and best of all, see both my children maturing into amazing young adults. So the transplant one was overall a very positive event - its been the best six months of my life in many ways. Hopefully transplant 2 will go more smoothly and lead to a more durable cure. I'm determined to be an inspiration for those on this board dealing with serious issues and maybe contemplating a transplant of there own - I don't want to end up another sad story! I'll need all the support, thought and prayers from everyone to get there.

Thanks all
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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