My particular flavor of CLL has a complex karyotype and a deletion of the short arm of the 17th chromosome. And a clonal Notch1 mutation- This is all bad.
What that means is that my CLL is unstable and has a tendency to mutate. These mutations can lead to more aggressive clones of CLL that are resistant to therapy, or in worse cases transform into nastier blood cancers.
That last process is called Richter's Transformation.
I have now been on ibrutinib for over four years and 8 months.
Most Richter's Transformation happens in the first two years of treatment so I am well past the high risk period for that life threatening development. For that I am deeply grateful.
I do have a recognized mutation that does confer resistance to ibrutinib in PLCƔ2. This mutation can turn back on the signaling blocked by ibrutinib, essentially rendering the drug impotent.
My small subclone of CLL that has the PLCƔ2 mutation has been slowly growing for about two years now. That is until my last blood test that showed it had stabilized over the last 84 days, and had in fact dipped a tiny amount.
For that I am also grateful.
This is quite unusual as the usual pattern is a relentless climb in the number of resistant cells.
Why it happened and what I can do to keep it going down is a mystery. I would like to think it is because I have been exercising more, but that is a wild conjecture. But after I finish this post, I will work-out, just in case.
I know this might be just a pleasant respite on the road to relapse, but I'll take this sweet repose. And wish for more
For those whose CLL is more tame, the news is nearly always good, but most folks with my nasty mix of genetic freakiness have already progressed a long time ago.
While I was at the 2016 ASH meeting in San Diego last month, I had the opportunity to sit down with Dr. George Follows to talk about real world data on 300+ CLL patients being treated with ibrutinib compared to clinical trial data. You can view our interview here on the CLL Society website.This is important as too often the data is much better in the clinical trials than in the community, but for ibrutinib, this does not appear to be the case. And for those without bad markers, the results are very encouraging. If you want a personal response, or just want to stay in touch, please email me at bkoffmanMD@gmail.com. I have no other way of contacting. Thanks. Stay strong. After all, we are all in this together. And please visit our website: http://cllsociety.org for the latest news and information.