Hello everyone – My situation is odd, at best. My 74-year old mother was diagnosed with MDS nearly 5 years ago and swore my poor dad to secrecy about it. He felt like it was wrong to withhold this kind of info from my brother and me, so he told us and then asked me if I would research the disease for him. She refused to give him any information; he had to look at their insurance claim in order to know that it was MDS! He told me that she was giving herself daily B12 injections as well as taking Revlimid and was doing well. Fast-forward 5 years: Dad emailed to tell me that her doctor took her off Revlimid, as he didn’t see it was helping her. After her most recent labs were done and she had returned home, the hospital called and asked her to come back right away to receive platelets and 2 pints of blood.
My dad is fearful of asking her much about all this, given that she has not really let him into the loop. He asked me if I could find out what her future holds if Revlimid is no longer effective, and that’s why I’m here.
I don’t know what grade MDS she has, or if it’s due to deletion 5q. I know nothing other than that she has it and that Revlimid has stopped working.
Can anyone here help fill in some of the gaps for me so I can give my dad some info?
Thank you all!
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