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To Begin MDS Treatment? And with what?
I am new to the forum and have been through a bit of a ride over the past several months. I was originally diagnosed and treated for ITP - Platelets were 21k, RBC/WBC were normal. I went through high dose prednisone for about 6 months (including the weaning cycle), had 2 rounds of treatment with Rituxan, and was taking Imuran for about 3 months. In August I got PCP and began the Prednisone taper and quit taking Imuran. This timing also coincided with my highest platelet count since May - I was up to 96k and held steady for about 1 month. In the last two months I have dropped back down to the 30-45 range and held pretty steady.
Also in August, my diagnosis was changed to MDS with predominant Thrombocytopenia. I have mild dysplasia (<10%) in my RBC and WBC lines, trisomy 8, mildly hypercellular marrow - 70-80%. I have the inverted cd4/cd8 ratio as well. Recent BMB (12/18) showed no changes since the July BMB.
My doctor is pretty concerned about the low platelets and wants to begin treatment with Vidaza. Although I know that this is the first drug of choice and follows the NCCN guidelines, I can't help but to wonder whether immuno-suppressive drugs might be a better approach. Both seem to take 3-4 months to kick in....My basic internet research seems to suggest that immuno-suppression works well with Trisomy 8 low and intermediate risk, young patients.
Does anybody have any experience with this situation? Any suggestions on what to do? What to ask? Has anybody gone the immuno-suppression route first and then gone to Vidaza or is it typically done according to guidelines - Vidaza then on to immuno-suppressives?
I feel like I am pretty well researched at this point and should probably have a little more trust in the doctor, but want to get some feedback from the people whose lives are affected directly by the disease.
One last note, we have activated a search for a bone marrow donor - but given that I am IPSS-1, there is not a rush on the part of the BMT doctors to move forward.
Sorry for the long introduction. Any help out there?
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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