Now 8 months since I had to stop the FLAIR trial of Ibrutinib and Rituximab due to side effects (severe and debilitating muscle and joint pain) I have been pretty well with bloods within normal limits. Now, sigh, the lymphocyte count is up again and the concern is how quickly this will increase.
It has been suggested I might be able to do Unity trial of Idealisib combined with Ublituximab (I think this is the right name) but this would require initial treatment and monthly transfusions thereafter. A huge commitment as I am a travel writer....(insurance would also be an issue) SO I guess I would have to accept FCR instead..... I know there are other new treatments, Venetoclax and Acalabrutinib for example, but not available on NHS.
Any thoughts, dear CLL chums? Merry Xmas and bon courage to all.