This whole process of shopping for a clinical trial reminds me of choosing and applying for admission to a college. Which is the best one for me? Will they admit me? Are all the slots filled?
As recently as ten days ago, I thought I had no options left, or only poor ones. Sort of like applying for Harvard but having to settle for an on-line course at the University of Phoenix. But maybe I got lucky.
Four days ago Nancy and I drove seven hours south to the National Institute of Health (NIH) at Bethesda, Maryland.
After sending in all my CLL-related history---pages and pages of faxed medical records---I was invited to visit NIH to see if I fit their specifications for a clinical trial evaluating an experimental drug called PCI-32765. Click here and then scroll down a bit and you'll find more than you ever wanted to know about PCI-32765 and how it works. The basics: it's not a chemotherapy. It's a daily pill and it interferes with the development of CLL. And test results so far are very encouraging, almost in the "too good to be true" category.
They stuck a bunch on needles in me---blood tests, bone marrow biopsy, CT scan, EKG---and asked me to come back next week for one more biopsy and to take the first dose of this stuff.
They tell me that by next weekend, my lymph nodes will already have shrunk dramatically. Works for me. At the moment my head is so swollen I feel like someone stuck an air hose in my ear and started pressurizing my skull. My ears are all plugged up, either from swelling or a head cold the likes of which I have never had before. Ever try to talk when under water? That's what I sound like to myself right now.
Seven hours of driving is an ordeal to get there, but it's worth it. Then I am supposed to go back once every two weeks for two months, and then maybe once or twice more in the six-month trial. For those trips, maybe I can fly down there or take the train, when I am feeling more energetic.
The staff at NIH could not have been more accommodating, more personable, better listeners, or more competent. Picture a college campus the size of Cornell and realize it's all medical. Quite amazing.
Dr. Mohammed Farooqui, the guy managing this clinical trial, impressed me very much. Susan Soto, the nurse who does all the scheduling, went out of her way to listen in an earlier phone conversation to the urgency of my situation and to make things happen without delay. She gets my number 2 Valentine's card this year, after Nancy, of course.
These next four or five days, before starting treatment, will be tough ones, as I have had to stop taking Prednisone, which was about the only thing having a beneficial effect these past few weeks, keeping the swelling in check at least somewhat. Since stopping it, the swelling has been going crazy.
Four days. Just four more days.
