View Single Post
  #11  
Old Fri Nov 4, 2016, 02:35 AM
DanL DanL is offline
Member
 
Join Date: Dec 2010
Location: Denver, CO
Posts: 590
Data,

I experienced a decline in counts at around 6 months. I had very hypocellular in the marrow at 5-15%, and my counts were quite off. I also had some evidence of cytogenetic mutations in 1 out of 25 cells analyzed. My doctor spoke of doing some form of a boost, but thought that the declining numbers was due to GVHD or relapse potentially. I was put on vidaza and rituxan to try and combat both simultaneously, also to get rid of the steroids that I was on to try and tackle the gvhd.

After a single cycle of vidaza, my counts started improving, and by the time we finished with the rituxan, my gvhd had begun to quiet down. I had minor gvhd on most of my skin - really noticeable on the arms, legs, and face/neck. I had upper and lower gi symptoms, problems in my joints and eyes. All but the lower gut gvhd improved pretty well.

The part of your biopsy that concerns me is the dyspoesis, but that could be marrow stress from drugs or viruses, or hypocellularity.

End result of your question - yes, I had declining counts about 6 months in - the diagnosis was relapse or gvhd - both of which may have responded to vidaza and rituxan.

I have only really had gut gvhd with occasional flare ups in the other areas, but I am down to a low concentration of tac, regular photopheresis, and a small dose of budesonide every other day. Counts are really close to normal currently. All treatment with Vidaza and Rituxan ended in Feb 2015.

Good luck getting this challenge out of the way.
__________________
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.
Reply With Quote