Got back very late last night from NIH. What a long day: up at 3:15 a.m., catch a 6:00 a.m. flight. Return flight delayed. Finally back in bed at 1:30 a.m. Pretty darned tired. But, given the cards I was dealt some years ago, I am darned lucky I have the opportunity to hobble through such a 22-hour ordeal.
Here's the report: Even though I had to go off Ibrutinib for 14 days (knee surgery), my blood test numbers continue to march in the right direction. Amazing.
One little oddity: some other lab rats---not just me---have been reporting brittle, splitting fingernails after about a year on Ibrutinib. Hmmm; tough choice: CLL or split fingernails? Split fingernails or CLL? Yet one must wonder: Are the brittle, split fingernails an outward manifestation of the same process that made my knee (meniscus--that supposedly cushiony pad in there) more fragile? Nobody knows.
One other thing: there has been some fearful chatter in the CLL community about a possibly horrific price tag for Ibrutinib, once it becomes commercially available. Folks have been throwing around bankrupting kinds of numbers. I can report "from the front lines" that when I signed for my newest batch of Ibrutinib at the NIH pharmacy yesterday, a thirty-dollar price per pill flashed onto (and quickly off) the screen. Precisely where this number comes from, I cannot say. Is it a rock-bottom actual cost of small-batch manufacture, one we could expect to go down with larger-scale production? Is it a price we could expect to rise, so as to include a return on investment not now included in that price? Or is it just an arbitrary accounting device used at the moment by NIH and/or Pharmacyclics? Your guess is as good as mine, probably better.