I'm scheduled to start treatment for CLL in a few weeks. I live in the USA and have an opportunity to participate in a randomized clinic trail of FCR vs. Ibrutinib/Rituximab for treatment naive; < 65 years old subjects. The only health issue I have is CLL, (no blood pressure problem, Cholesterol, etc.) so I'm not on any prescription drugs. I have (a) no deletions, (b) the B-cells are negative for ZAP70 (18%), (c) IGH somatic hypermutation in B-CLL. The IGH V allele identified was 3-30*01 F. My WBC has gone from 140K to 240K in a year with a large tumor load.
What criteria have others used to decide whether to participate in a trial; and/or to go with the FCR course of treatment. The idea of taking pills (Ibrutinib) for an unknown amount of time is not very appealing. The study representative said that the very expensive medication would be supplied as long as I was responding to it (1 year or 10 years). That is very hard to believe that a drug company would agree to provide such an expensive medication indefinitely. Thanks for any response.