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Old Mon Aug 29, 2011, 12:04 AM
DanL DanL is offline
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Join Date: Dec 2010
Location: Denver, CO
Posts: 590
Greg,

Hard to say with the Revlimid option. Many people experience short-term reductions in platelets/RBC only to see them increase and get back into the normal range after a couple of months. I did see a recent study that tied transfusion independence to initial starting dose, which is 10mg/day as opposed to the 5mg dosage, although many people do respond to the lower dose. A lot of folks go through at least a temporary dose reduction, but this does not seem to alter the overall response.

Although i normally swim upstream, i think that I am falling in-line with the crowd here and saying that Revlimid seems like a logical choice. The very bright spot is that most responses are within 90 days, so you would not be wasting a lot of time on the drug.

For some reason though, I would want to know more about why Thalidomide is off the table. It tends to do well with mild fibrosis and helps increase RBC in a good number of patients when the dosage is not very high, as Birgitta mentioned earlier. 100-200mg/day seems to be the sweet spot.

I am pretty sure the answers are yes, but have you already been tested for the Jak2 V617f mutation and for PDGFRB? For the latter, Gleevec has been used successfully - for the former, I haven't seen a whole lot of research, but a Jak inhibitor might be interesting.

this may have been 4c worth of feedback though.

Good luck finding the answer!
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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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