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Old Fri Feb 27, 2015, 01:11 AM
DanL DanL is offline
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Join Date: Dec 2010
Location: Denver, CO
Posts: 590
1 year post transplant today - update

Today was my 1 year re-birthday. I almost forgot entirely to celebrate, but did make it out to dinner tonight.

Since the last update about possible relapse, I have completed 6 cycles of Vidaza, and 3 days of anti-gvhd treatement with Rituxan, as well as a bunch of other drug changes from tacrolimus, sirolimus, prednisone and hydrocortisone. The good news is that I have had two biopsies since August that have come back with normal cytogenetics, normal blast population, and steadier blood counts. I have remained transfusion independent since leaving the hospital.

My current regimen includes photopheresis, lower dose steroids, tacrolimus, and Rituxan. We are working on reducing immune suppression overall, which is what the Rituxan is all about. Overall, doing pretty well with all of the changes. Some of the predictable issues - I think that I have avascular necrosis once again and will be going in to see the orthopedic surgeon again tomorrow. This is probably the result of corticosteroid use, but the option is GVHD that can run out of control - hips are easier to replace than rampant GVHD is to cure, so a little pain and potential surgery in the future are acceptable.

The photopheresis along with the prednisone and Rituxan seem to be doing a nice job of eliminating skin and gut GVHD as my symptoms have improved. For the first time in a long time, my arms, face and neck have normal color to them - it does not look like I have been exposed to the heat lamps for too many hours - good progress. The doctor has been working to get me away from prednisone for some time and we have begun yet another taper. My body has held up well in terms of liver enzymes, kidney functions, and chemistries, but long-term toxicity is always the concern.

As Bailie has said in the past, if I had to do this over again, I would. It has been the right decision for me, and I still believe strongly in the team of doctors that I have, that the outcome will be the best that was available, and that despite the bumps in the road, that transplant was my best option. I won't say that any of it has been easy or that it is a smooth road, but a road without bumps seems boring.

Thank you all for being available on the forums for the past several years of this journey. I look forward to hearing more success from all of you in the coming year.
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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.

Last edited by DanL : Fri Feb 27, 2015 at 01:12 AM. Reason: incomplete
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