It has been a long time since I posted anything here. I didn't want to freak-out Nancy with the "inconvenient truth." But it seems we are past that point now.
The inconvenient truth is that if you flunk your first round of chemotherapy---especially if it is a chemo that is considered to be the gold standard of chemotherapies---you are, statistically speaking, "up the creek."
So, for the past year or so, I have been shopping for a paddle---in the form of a clinical trial.
My local oncologist had been recommending for months (maybe a year) that I do a second round of chemo, this time with a combination of Bendamustine and Rituxan. I have resisted. I do not like what I read about the history of Bendamustine and the data upon which its official approval as a lymphoma treatment was based---that the trials were arranged to make it look better than it really is. Nor am I encouraged by an Italian survey of Bendamustine users that turned up the detail that 67% of them were dead within two years. That doesn't sound like success to me.
I went to Memorial Sloan Kettering Cancer Center in New York City to discuss with Dr. Jae Park his clinical trial with Revlamid (lenolidamide)---a variation on the old thalidomide. It sounded pretty promising. I went back to Mayo Clinic in Minnesota in early December and met again with Dr. Timothy Call, who recommended a clinical trial with a new experimental drug called PCI-32765, and upon my return began looking on the Internet for one. I also visited Dr. Jennifer Brown at the Dana Farber Cancer Center in Boston. I am impressed with all three of these CL specialists.
A visit to www.clinicaltrials.gov turned up several PCI clinical trials that were apparently available, but direct contact with the listed hospitals revealed that most actually were not available any more.
I'll spare you the crazy details of how some hospitals/clinical trials seem to do a "bait and switch" ("Sure come on down for an appointment," and then when you get there, they tell you, "Oh, that trial you've been asking us about for two weeks actually isn't available any more, but we have this other trial.")
I can say with some great relief that I was recently notified that I have been accepted for a PCI trial at the National Institute of Health. It has been so difficult to find one that suits my circumstances, that is (was) still open, and that also will accept me that I am almost afraid to jinx it by saying "I'm in." But unless they pull the rug out from under me in the next two days, Nancy and I will be traveling to Bethesda, MD, next Tuesday to get me started.
PCI-32765 differs from chemotherapy in two major ways: (1) it's a pill, not done intravenously; and (2) it (reportedly) doesn't blast away your immune system in the war against excess white blood cells. To over-simplify, it seeks to halt or regulate the production of CLL cells.
I am pretty sure the next six months won't be a "walk in the park." Undoubtedly there are risks. But it's time to get moving on this.
