Family member newly diagnosed with MDS

Posted by sdtpats @sdtpats, Sep 15 8:46am

Hi everyone,

I have a brother newly diagnosed with MDS. He has had low platelets in the 70,000 range for 7+ years and has been on a wait-and-see, but they just diagnosed it officially last week. We are heading to the Mayo Clinic next month for further discussions. Thank God, he doesn't have any symptoms yet.

Do most people in this situation go straight to the stem cell transplant? Is there an interim step? He's 56 and we want him to live a very long and healthy life. Thanks for any advice!

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suetex | @suetex | Sep 16 6:57pm

I think it is very individual. I was having IvIg (for another reason) at least a year and a half ago when my platletts fell and I thought it was a drug reaction. My oncologist sent me for a bone marrow biopsy and diagnosed the MDS. No stem cells in sight yet (or even talk of them.) I've had a treatment for anemia that went well and thats it.

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