I am posting from the Cafe Kerouac In Columbus OH awaiting another 12 week monitoring session for my extended Clinical Trial using PCI-32765 (Ibrutinib). It has been 6 years and 9 months since I started therapy.
From an anxious post by an HU CLL forum member over a high ZAP-70 report I got inspired to write an article focussing on ZAP-70. ZAP-70 is frequently ordered in an attempt to assess prognosis along with other commonly known tests such as FISH (Fluorescence In Situ Hybridization) that looks for chromosome aberrations, CD38 and IGHV mutation status. ZAP-70 is reported as a pathologically active marker in CLL if it is positively expressed on >20% of B cells or if less than <20% it is considered negative – a switch on or off metaphor. This is overly simplistic for ZAP-70 is much more. When I was diagnosed with very favorable markers but with a sole exception of a very high ZAP-70 (58%+) I wanted to learn more which eventually led me to gamble on a very early Clinical Trial using PCI-32765 (Ibrutinib) after failing two standard therapies.
For a window into the complexity of CLL I invite you to go to the just published CLL Tribune cllsociety.org/the-cll-trib... for my journey with CLL and a closer look at ZAP-70. CLL can be a nasty killer and cat like in its habit of playing with us like a captive mouse over time. My philosophy has been to let CLL be my teacher not my fear. Learning biology through the lens of CLL has been both an education and has helped me to cope, arming me with knowledge to make better treatment decisions.
WWW
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ThreeWs
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‘’CLL can be a nasty killer and cat like in its habit of playing with us like a captive mouse over time’’.
So true WWW.
I so agree with your philosophy of learning about your enemy, taking the sting out of its power and trying to find a way to regain control. It’s an approach I try to embrace but sometimes the vulnerability kicks in and it’s necessary to re-group and re-focus again. A very helpful post particularly for those of us contemplating treatment in the non too distant future.
Thank you for posting this WWW, very interesting. Congratulations also on your philosophy of empowering yourself with knowledge to give you confidence to make those difficult decisions. This is so important.
At six years and nine months in treatment you must have been a very early Ibrutinib patient, and I'm very glad it's working well for you. The information provided by you and other patients on this kind of trial is invaluable, and I wish you continued good health.
I was one of the few Ibrutinib patients to have suffered aberrant heart arrhythmias that not only included A-Fib but tachycardia as well.
Context is important to get any value from a patient experience. In my case I first experienced arrhythmia right after my first cycle of FR (Fludarabine/Rituximab). I was diagnosed with A-Fib prior to entering the early Clinical Trial with Ibrutinib. The Tachycardia was controlled via right atrial ablation and over several succeeding months the A-Fib got worse until I underwent a Pacemaker (PM) implant and an AV (Atrial/Ventricular) node ablation in May of 2012. Since then I have not had any clinically bad heart issues.
Note: I was born, as was my father, with congenital bradycardia (Low heart rate at 45bpm at rest) This was likely a foundational issue which triggered my problems but may not be, nor is likely everyone's cause for A-Fib or tachycardia when on Ibrutinib. There are several known preconditions that predispose people to A-Fib. The PM is keeping my heart rate in the normal range (60-100bpm) at 78bpm and this likely to prevent a pathological escape mechanism from my former and dangerous low heart rates recorded in the 30s after taking Ibru from inducing the chaotic rhythms of A-Fib to occur.
A comprehensive evaluation of a patient's heart health may red flag some at higher risk.
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