I have been on FLAIR trail since November 2015, finished Rituximab end of March. Suffered side effect from Ibrutinib of severe muscle and joint pains. Despite reducing the dosage to the minimum these continued. So debilitating that eventually it was decided to stop the Ibrutinib completely. After bone marrow biopsy and scan it appears that the CLL has been greatly reduced, down to 5-10% in bone marrow compared to 90-99% at beginning of treatment. WBC down to 61 compared to over 300 at height. I am delighted, feeling much better, back to work now. (Not absolutely better, still like naps, taking it gently..but hey.)
Back on watch and wait, and offered possibility of another trial, Galactic, within next 2 years. This treats with Obinutuzumab, monoclonal antibody targetting CLL cells, suitable for patients who have responded to treatment but would not usually have further treatment until the CLL returns. Basically can we hold it off longer?
Side effects of this are not inconsiderable but there is time to decide. As good an outcome as I could wish.
Very big thank-yous to all who have responded to my past queries and anguish, and courage to all.