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Old Mon May 16, 2016, 08:06 PM
DanL DanL is offline
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Join Date: Dec 2010
Location: Denver, CO
Posts: 590
Greg,

I totally understand the whole once you are in the hospital thing. I spent about 80 days in and out of the hospital last year, some for pain management for my hips, then developed severe pneumonia, then had an infection in my line that resulted in the line being pulled. I was also in for recurrent cellulitis and swelling in my feet......totally awesome stuff, but 5-16 days per visit.

That being said I went into transplant with about 15% peripheral blasts, they may have dropped back down to 11 or 12%, but either way, they were high. I did a fully myeloablative chemo regimen though.

My guess would be that you would be doing a reduced intensity conditioning - maybe follow with some vidaza to help it along. I think that mausmish did this for 12 months afterwards because of her risk status. I took 6 months of vidaza after i relapsed 6 months after transplant.

I am wondering if you might want a little bit of gvhd to get a little bit of the graft versus mds effect. I know that gvhd can be a bit of a pain, but I am pretty sure that it has been responsible for continuing to fight off the disease. GVHD is definitely one of the morbidities to look out for, but relapse is usually really bad.

I did read an interesting article about controlling gut gvhd with basically butter extract - it looks like there is a compound in butter that protects the gut from GVHD - at least in mice - so if your cholesterol can handle it, extra butter on everything!

Good luck with the next few weeks and months as you begin making the big decisions again.

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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