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Old Wed Dec 16, 2015, 04:13 AM
DanL DanL is offline
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Join Date: Dec 2010
Location: Denver, CO
Posts: 590
1 year post-relapse update

I just wanted to provide an update on my progress. I received my bone marrow transplant on February 26, 2014. Although engraftment was solid, chimerism was 100% donor and my energy was pretty good, my recovery was not strong in terms of blood counts. I did not have any blasts or other truly negative indicators, but something wasn't right.

On August 13th, my wife's birthday, I got a phone call from the doctor indicating that my latest biopsy showed evidence of relapse. There was only one cell out of 21 that showed relapse, but it was enough to be an issue. I did not have excess blasts. The one cell had trisomy 8, 19, and 22 as well as -1q, so it met the criteria of complex cytogenetics. My cellularity was also very patchy and ranged from 5% to 60%. Chimerism was still 100% donor. I met with the doctor shortly thereafter and we decided to put me through 6 cycles of vidaza for the relapse and 6 cycles of rituxan for gvhd. We were trying to utilize steroid sparing anti-gvhd treatments as I had developed avascular necrosis.

My November 2014 biopsy showed no evidence of MDS, no blasts, no trisomies, no excess blasts. This was one biopsy down, I was hoping to continue with clean biopsies. The following months, I experienced many hospitalizations - the result of my avascular necrosis for pain management. I had pneumonia with 80% of my lungs involved, I had 3 bouts of cellulosis in my feet, 2 requiring hospitalization, and then I spent about another month in the hospital for undetermined GI symptoms. All told, I spent about 100 days in the hospital.

This month, I received the results of my November biopsy - I now have 1 year of clean biopsies - no cytogenetic issues, no excess blasts, 100% donor cells, 55-60% cellularity in the marrow. My peripheral blood counts have finally recovered - 235k platelets, 8.5 WBC, HGB hovering between 9 and 10. I would not say that I am out into the clear just yet as 2 years seems to be a pretty good number for MDS, but 1 year without relapse feels pretty good. I am expecting to get my left hip replaced within the next month, right one a few months after that. I am hoping to see my recovery accelerate in the next months.

Although this has been a bumpy road, I am still very encouraged and hope to have a full recovery over the next couple of years.

I am also wishing all members of this forum good health and success with their respective treatment plans.
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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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