Hi All:
Just wanted to let all know that I saw the doc yesterday and got the report from my bmb. The 5q- is back, so I am no longer in remisssion. Last April it was gone, Sept was questionable (two reports – one said 5q- was gone, other said it was back) Jan says it is back.
This has not effected my counts as they have been staying fairly steady even if slightly low. The good thing is that I still am not getting the txs. The hgb is 13.6 and the crit is 40 so I am not in need of red cells.
I am still getting the phlebomoty every two weeks to get rid of the iron.
The doc gave me 3 options – continue as I am taking the revlimid, stop the trial completely (which I do not want to do) and up the med from 5mg to 10mg, which I chose to do. I will have to watch very closely, as when I first started out I reacted to the 10mg dosage. Now that my body is used to the med, I may be able to handle it with no complications. Time will tell us how things go.
I still have my energy and feel well, so I can’t really complain.
The “Poster Child” just lost her position for Revlimid. If my body reacts like we want it to, I may regain my position. Heeee!Heeee!
My prayers still go out to all of you, the patients and caretakers and to find a cure for this dreaded disease.
Naomi
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