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On May 7, 2012 I took my first dose of PCI-32765 at Ohio State University, in Columbus, OH as part of a phase 1 trial of the drug that would later revolutionize the treatment of CLL as ibrutunib. But for the first several years it was known only by its number.
When I started my trial, less than 200 folks had swallowed the battleship gray capsules that started to shrink my nodes within days and gave me years of a deep, durable and soothing remission. That bought me the time to co-build the CLL Society with my wife and to make my next therapeutic move.
On Feb. 20, 2020, I had just returned from Spain and immediately stopped taking my ibrutinib.
Not all my doctors agreed that I should have stopped. I was doing great with little problem. Why mess up a good thing?
On the other hand, why take a pill, albeit a well-tolerated one, if I don’t need to? It is expensive and is not without some associated risk, especially cardiac in the elderly.
I went with that second line of reasoning. I stopped.
I said goodbye and thanks to my best friend, my bosom buddy, my life saver.
It was hard. It was a security blanket, my guardian angel. I was moving into unknown territory though I had known for a few weeks that I had no CLL detectable by both flow and clonoSEQ.
My morning meds were now pretty skimpy without the 3 capsules that had saved my life when I was running out of options after failing a bone marrow transplant 8 long years ago when del 17p CLL was pretty much a death sentence.
PCI-32765 had controlled my CLL long enough to allow me to jump to my next phase 1 trial, that time of a CAR-T drug, JCAR-014 (I guess I have a thing for unnamed drugs) that was later to be developed into liso-cel.
Ibrutinib not only knocked my relapsed CLL back much longer than the expected 30 months or so, typical for those with my bad prognostics such as del 17p and complex karyotype, it also modulated my T cells that helped control my auto-immune problem (ITP or immune thrombocytic purpura) that almost killed me a few times.
In fact, a big concern with stopping wasn’t just my CLL returning from the depth of < 1 in 1,000,000 cells, but my ITP raising its ugly head again.
You see while about only 1% of CLL patents get ITP, there is no correlation between the extent of the disease and the risk of ITP. For some folks, ITP is the first symptoms of CLL.
The concern was, would the ITP reemerge if there was the slightest trace of cancer around to disrupt my immune system? That is why I didn’t stop in Spain, but when I was stateside I could get regular CBCs and check that my platelets were behaving. Next blood test is tomorrow.
Now while there is no connection between how much disease and the risk of ITP, there is probably a connection between not having any measurable CLL and not having an increased ITP risk. That was what I was counting on.
The discontinuing took an unexpected turn.
The day after I stopped the ibrutinib I got sick, quite sick: fever of 101.5, significant myalgias and pain, a deep chesty cough and profound fatigue.
I slept for most of the next few days and started myself on my emergency stash of Tamiflu. After 5 rough days, I was definitely recovering. On day 8, I still am coughing and sneezing occasionally, but I am better.
There is a similar sounding ibrutinib withdrawal syndrome described in Waldenstrom’s Macroglobulinemia, but that is likely due to residual cancer causing problems. Plus, a cough is not part of the withdrawal clinical picture. I think I simply caught the flu in my travels. Although there was some isolated coronavirus in Spain when I was there, the numbers were tiny and my incubation period was way too short and was consistent with the 3 days that are typical for flu.
As to the CLL, the classic recrudescence is nodes popping up again, often quite quickly, as any residual cancer cells are no longer blocked by ibrutinib’s BTK inhibition from honing back to their protective niches in the lymphatic tissue.
I have noticed nothing when I check in the shower or shaving. NADA!
This is really new territory. So far so good. But it was a difficult decision.
I am feeling most optimistic.