My June 1 appointment at the National Institutes of Health marked the 114th day of treatment with the experimental drug PCI-32765, now also known as Ibrutinib.
In sum: Hey, everything still looks good and very positive . . . far beyond what I had any right to expect or even hope for.
Some details: My blood tests show almost no change from one month ago. That surprised me. I had thought a predictable course of events would show continued increased and decreased (as apppropriate) numbers toward normal scores. But that did not happen.
That probably says much more about my expectations than about efficacy of the drug. Dr. Farooqui and the CLL team at NIH seemed unconcerned that the improvement in blood test numbers had tapered-off. And probably I should be, too. I feel very good . . . pretty normal, actually. Compared to where I was in January and early February, it's all still pretty darned miraculous. If my blood test results never get any better than they are now and I still feel as I do now, I'll be quite satisfied.
So what is a plausible explanation for no further improvement in blood test results? It seems obvious to me that CLL cells are still being pushed into the blood stream from somewhere, either from lymph nodes where they had taken up lodging (seems plausible; my once-swollen lymph nodes are just about invisible now), or the bone marrow is still cranking out new CLL cells that are going straight into the blood stream without a stopover in lymph nodes.
The end-of-trial bone marrow biopsy in early August should tell us what is going on in the bone marrow.
What then? What happens after that final trial-related appointment and biopsy (and CT scan)?
I posed that question to Dr. Farooqui and his colleagues. If I heard them correctly, the PCI-32765 will not be viewed as though it were a chemotherapy "cure." In other words, unlike chemotherapy, where "You're done; go home," the expectation is that a daily use of PCI-32765 will go on and on forever, provided there are no adverse effects. It appears that the drug company (Pharmacyclics) has agreed to keep supplying us "human lab rats" with the drug 'til death do us part.
The investor class will likely be doing cartwheels of joy at this. That means thousands of people and their insurance companies paying for the drug day after day forever: a capitalist's dream come true. But I'm not complaining. Quite literally, it works for me.
And there is such an investor class. Data available to me as owner of this blog tells me that a high percentage of the 3,700 "page views" of it have been linked from "Yahoo finance," where someone mentioned this blog and provided a link to it.
Who woulda guessed?