Personally, I am continuing to do great with near normal counts and no palpable nodes. CT next month in Ohio. All good. Off to Stockholm next week before EHA and just home from ASCO.
Now the community of ibrutinib users including those taking it for other B cell cancers including MCL, WM, and others now exceeds 1500 brave volunteers. Remember that the first trials were only begun in 2009. Many of those phase 1 trial patients are still on drug that tells us something about the durability of the responses, albeit in very small numbers. Still that makes the longest experience with ibrutinib something short of 4 years.
And as with many other biological treatments, the longer we stay on ibrutinib, the more responses, the more complete responses.
One of the nice problems is that when over 200 patients from the early trials were consolidated to look for those who had relapsed after more than a year on therapy, there was only a handful patients to study in more depth. Leaving aside the expected number of Richter's Transformation, about only 1 out of 20 patients had relapsed with CLL. Most were 17p deleted but one was 11q deleted with a history of nasty auto-immune hemolytic anemia. I refer you to Dr. Sharman's nice review of the subject.
Whenever ibrutinib is approved (and hopefully that will be soon), the number of patients taking the medicine will swell. Other oral drugs may quickly follow. We will need to remain vigilant to see if rarer side effects become apparent post approval. And watch for long term surprises.
Many questions unanswered, but we have come so far in so few years.
And this is just the beginning of a new wave of targeted therapy. Ibrutinib and idelalisib and ABT-199 and GA101 are just the beginning of new wave of game changing therapies. Second and third generations of mAB and TKIs are following on their heels. We patients are needed for the trials to maintain the forward progress.
But let's celebrate the progress that we have made.