Quote:
Originally Posted by slip up 2
Patti...as i read your posts remembering the first post you made & you so sure you would never understand any of this chargin about blood counts & what is involved with MDS....with this dreadful disease how wise we have all become....this disease has taught us much about life & living....being so tired and worried yet we still go forward....how lucky we all are to love the people we love & be loved in return....
We did use a walker and a wheelchair as the breathing became an issue, just made life much easier....it is all part of the disease....
This form is like a family we will never stop caring for.
Did find some info on the clinical trial 17280....i googled clinical trial MDS...then went to INCB024360....Birgitta or Dan might understand it....
Take Care
Kate
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Hi Kate,
I found the study!!! Thank you. The write up is different than the report they gave to us at Moffitt, of course that one is about a dozen pages long. Lots of reading.
Our papers say the drug has only been tested on animals for MDS, but later in the report it says the drug has been tested on humans for other diseases. That made Dean feel better. The study will last sixteen weeks, every four weeks is a new cycle. If someone shows an improvement on the drug, it is an oral medication, they can continue using it for up to 12 months after completing the first 16 weeks.
Yes, I feel as though I am becoming an expert in blood counts. Not really, but I sure do know more than I did last year. :-)
We have a small Honda Civic, so a regular size wheelchair would be a challenge, but my neighbor has a small transport one that folds up compactly. It will be easier for Dean, walking is becoming so difficult for him because he is so weak and out of breath.
We are thinking of getting a walker for around the house, I am afraid Dean is going to fall down, so it would make me feel better if he used one.
Thank you again for finding the study! :-)
Love and hugs, faith, hope and prayers!
Patti and Dean