I just got back from The National Institutes of Health a couple days ago.
It was about "as expected"---that is to say, they confirmed that my four-year run on Ibrutinib is coming to an end. CT scans in February confirmed that my lymph nodes are starting to grow again. I really didn't need a CT scan to tell me that. I can feel them in my armpits and a bit in my neck, too. Enlarged tonsils are interfering a bit with breathing while sleeping, reminiscent of five years ago.
While I was at NIH, they laid me on an operating table and used a double-wall needle to crank lymph node tissue out of my armpit. Analysis will tell them if there is any chromosomal change in the nature of my CLL. I suppose they are also looking for what is known as Richter's Transformation, a change from CLL to another form of blood cancer. It can happen, but usually earlier in one's relationship with Ibrutinib.
So now it's on to Columbia-Presbyterian Hospital on March 8 to see about enrolling in another clinical trial, this one for a drug known as ABT-199 or Venetoclax. Its reputation is that it is so effective that it has to be dialed-up slowly over the course of a multiple-day hospital stay so as not to overload the kidneys with dead, decomposing CLL cells, and that it works where Ibrutinib has begun to fail.
There is a solid basis for hope.
I am going to be interested to learn what Medicare and Capital District Physicians's Health Plan (CDPHP---my supplementary health insurance plan) have to say about all this, for unlike NIH, where EVERYTHING was free (they even paid for my air fare each time), Columbia-Presbyterian has already billed $500 just for an initial conversation back in November.
It looks like a clinical horse of a different financial color.
