One patient with glioblastoma still alive nine years later
by johnwc on Sat Jan 11, 2014 01:35 AM
I would like to join this discussion.
I'm John and live in Portland, Or. In early December I was diagnosed with CMML, low risk. Two days ago I met with the transplant specialist at OHSU (Oregon Health Sciences U.) and had a frank discussion of my prognosis.
I'm 66 and feel like a robust, athletic young man. (was an avid tennis player) My only symptom is fatigue. My WBC keeps spiking up so we are starting the Decitobene in a few weeks. She said the number will guide the process. Some people can be in remission for years but at some point the drugs stop working.
Transplant timing? The donor search is beginning and will depend on the strength of the match. If good match and I'm still strong, then a mini would be appropriate. I have learned that there are a lot of uncertainties and this disease has a mind of it's own.
Anyway, I wanted to introduce myself and and say Hi to Veronique and Linda, is that correct?
by Txlinda on Sat Jan 11, 2014 02:14 AM
by Veronique on Sat Jan 11, 2014 03:04 AM
by Veronique on Sat Jan 11, 2014 03:23 AM
by Veronique on Sat Jan 11, 2014 03:30 AM
by Txlinda on Sat Jan 11, 2014 04:01 AM
by Veronique on Sat Jan 11, 2014 04:22 AM
by Txlinda on Sat Jan 11, 2014 05:04 AM
by Sunnsurf on Sat Jan 11, 2014 01:24 PM
by johnwc on Sun Jan 12, 2014 11:29 PM
Veronique and Linda, So nice to meet you.
Diane, welcome. It is comforting and to reassuring to have intelligent discussion among us who are in the same boat and facing BMA.
So, after my meeting at OHSU and transplant doc, she emailed me and my WBC has spiked again from 25 to 33, Platelets are 95 and Hemoglobin 13.4. Certainly not bad, but don't like the direction so will starting the Decitabine in the next couple of weeks. Blessings, JOHN
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