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Old Mon Jul 20, 2015, 08:27 AM
PaulS PaulS is offline
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Join Date: Sep 2014
Location: New York
Posts: 247
Hi Kerpaka -- sorry to hear about your diagnosis -

The numbers you report are a little different than I'm used to - but it looks like you are normal or nearly normal in everything except platelets - which look fairly low - but not dangerously so. Am I reading your numbers correctly?

I assume they found dysplastic cells in the marrow which led to the diagnosis of MDS? Its great you have no blasts. Have you had low platelets for a while? Any other symptoms? How do you feel?

If you cytogentetics come back OK and your counts stay stable you could be watching and waiting for a while. The course of the disease varies significantly and some people go many years just watching. Lets hope you are one of them. In the meantime, make sure you have a hematologist you feel good about and who answers your questions to your satisfaction. You may consider a second opinion from a center/doctor specializing in MDS - I believe there is a Center of Excellence in Toronto -

When and if to start Vidaza can be a tricky question - but it seems for now your doctor is being conservative - which is not a bad thing. As long as you feel good and your numbers stay where they are - life is good and enjoy - and try not to worry too much. If things change, there are treatment options that may also work for a while - maybe a long while - The only cure is a transplant - but it sounds like you are a ways from having to think about that route - Stay positive - Best wishes, Paul
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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