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Old Mon Jun 18, 2012, 12:37 AM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Hi DanL,

I am curious why your doctors are not suggesting trying IST first. You are young and have a trisomy 8 mutation (which is seen in immune-mediated MDS). Your counts are continuing a steady decline. So, why not use this time to see if something like Cyclosporine alone could reverse the trend? Cyclosporine is well tolerated and you could see results in 2-3 months.

I also had reticulin fibrosis +2 and an MDS RCMD diagnosis when things were at there worst. When the immune attack was controlled, the fibrosis eventually resolved as well. Reticulin fibrosis is reversible. Callogen fibrosis is not. As this article points out, reticulin fibrosis shows little correlation with the severity of the disease.

http://www.haematologica.org/content/96/2/180.full

This article talks about the benefits of IST for the treatment of MDS with trisomy 8.

http://bloodjournal.hematologylibrar.../841.full.html

If I were in your shoes, I would talk do my doctor about trying cyclosporine alone during this watch-and-wait period to prevent further damage to your marrow and potentially reverse the disease. Vidaza just doesn't make sense to me. It also isn't a long term solution. IST can be.
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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