Now five months deep into this clinical trial, I must say things are continuing to look about the same, and that is good All of my blood test numbers except one continue to show very gradual improvement. The one exception is the WBC (white blood cell count) number, which actually showed an infintesimally small increase (not the direction you want it to go). I attribute that to the fact that my sinus infection, long ago brought under control, was never fully subdued and is making a very gradual comeback. White blood cell numbers go up when one's body is fighting infection.
That's my best guess, anyway.
Another oddity: When I was at my worst, back in late January and early February, before starting this clinical trial, I was experiencing excruciating bedtime leg cramps. After the February 16 beginning of PCI those legs cramps went away. But in recent months they have gradually started to return.
What to make of that? I am not sure. One theory bouncing around my brain is that perhaps it was not the PCI that halted the leg cramps. Maybe it was the transfusion I received at NIH at the very outset that did that.
One other bit of news: a small group of "human lab rats" involved with this clinical trial has been sharing experiences and observations. One fellow who has been on PCI for more than a year reported that he had to stop taking PCI for a couple days (apparently for somewhat unrelated reasons). The swollen lymph nodes began to return almost immediately, he reported. I guess that tells us whether PCI is a cure or, rather, a therapy.
Either way, I'll take it. For CLL patients, it looks to be the best game in town, making conventional chemotherapy look primitive and barbaric in comparison.