iwCLL 2013: Dr. Byrd Discusses If and When to Stop and the Long Term Use of Ibrutinib

In this last part of my interview with Dr. Byrd from iwCLL 2013 in Koln, Germany, he speculates on the issues of long term risks of using ibrutinib, and the complex concerns about stopping the medication.

This segment's posting was delayed due to some technical issues, so please look back to the prior part one and part two to get oriented.

The updated news from ASH 2013 about the long term safety concerning ibrutinib continues to be encouraging. Most problems, including serious infections, occur most often in the first six months. The longer we take the pill, the fewer the problems.

The data on late relapses is still very thin because they are so few and far between, but it is clear that they do occur, mostly in the usual suspects, those of us who have been heavily treated or have high risk and unstable genomics such as deletion 17p or 11q.

Sadly, the Kaplan Meier curves are not longer straight lines going out towards eternal life, but they are still pretty great. Below are the ones from about six months ago from NEJM. The latest data is little changed.

KAPLAN MEIER CURVES FROM DR. BYRD'S ARTICLE IN NEJM 7/4/2013

Will they continue there downward droop? Will it accelerate? We don't know the answers yet.

Because every step down is a lost life, we are not being greedy when we want the great results to be even greater.

Dr. Byrd does make an interesting and important point about going off meds. Most relapses occurred in those who had only been medication for a short time, and without the selection pressure of ibrutinib blocking the BTK pathway, there is no survival advantage to mutating past it and therefore little likelihood that we will see that resistance develop off med. That's good news and if confirmed in clinical trials and hopefully soon, in real life experiences, could have major implications on how we dose the medication and control the cost.

Here is the video:


Since that meeting, we do have some answers to a few of the questions that were unanswered in Germany.

We know what the pills cost. About $91 each retail. About what was expected.

We are seeing some new interesting late side effects. In contrast to the minor annoyance of brittle nails, some of us are enjoying thicker, curlier and darker hair.

Maybe there is a whole new marketing opportunity for Pharmacylics and Janssen. Insurance may be hesitant to pay that kind of cost for control of cancer, but the price of vanity has no limits.

I will let you be the judge on the effects on yours truly.

Selfie from my Balcony 1/19/14