There is a daily "list-serv" for folks with CLL, and I have learned a lot from it. So I thought it only fair to post my own experience and observations.
A couple people wrote to me to ask (as I had asked of others), "How did you think-through it all to this decision?"
Here is what I wrote back:
"A very hard decision, indeed. And I asked lots of people whose opinions and analytical skills I had come to trust the very same question. It's a bet, not a sure thing.
For me, it had come down to FCR, FCR Lite, or just R.
Actually, the folks at Mayo Clinic (Dr. Tim Call, who I think is wonderful) I went to see for a second opinion back in May of 2008 recommended PCR. It substitutes Pentostatin for the Fludarabine. But in comparative tests, the PCR, (the Mayo prescription) didn't do quite as well as the FCR (the prescription favored by Keating, Wierda, et al at M.D. Anderson Center in Houston)
I asked Chaya Venkat (who has written extensively about FCR Lite at her amazing Web site at http://www.clltopics.org/) if she could discern any reliable, predictable circumstances under which FCR Lite was a more appropriate choice. She said, in short, "No." The facts are these: It does hammer the immune system less, but it also requires "topping up" with Rituxan periodically forever and the tests were done on a relatively small population and not very long ago, meaning it doesn't have the track record that FCR does.
I wrote to Dr. Terry Hamblin (one of the top CLL experts in the world, in England)---with some guilt, given his own cancer---and posed the same question as I did to Chaya Venkat. I asked if he had done a pros /cons appraisal of FCR versus FCR Lite. He quickly wrote back to say "no, but I am considering it."
I came across some correspondence with Dr. Keating---clearly on the all-star team of CLL experts--- who said that one's reaction to the immune-suppression of FCR is likely based, more than anything else, on the condition of one's immune system before undergoing treatment. And mine has been quite good. I am fortunate in that I have kept myself in resonably good athletic condition over the years, not a tri-athlete, but O.K.
I wrote to Wayne Wells, a fellow patient, one whose writing and analytical skills are sharp and clear. He had just made his own decision and to see his face back in April, you'd know why. He had golf ball lumps all over his neck and cheeks. Very serious. It was Wayne who pointed out to me the short track record of FCR Lite, and I immediately saw the truth in it when I dug to verify it. For him, getting his first treatments by an "ace" was important, so he opted for the long-day's drive from rural, western NY to Columbus, Ohio, and Dr. John Byrd, where they went with a sequential, rather than simultaneous infusion. Wayne's own unique symptoms seemed to call for that, and unfortunately he has had some kidney issues as a result. Latest word: he's doing O.K.
About Rituxan alone: My appraisal, after long hours of study, is that (1) the first blast is the most important and (2) every time you use it, its power diminishes. I met a guy at the CLL Conference in Niagara Falls, back in May, who had just completed his 54th round of Rituxan over the years. I think it is the only medicine he has ever taken for CLL (maybe dietary supplements). He is a diehard road-bike cyclist (the Lance Armstrong sort) and in otherwise good shape, but one could see in his neck and face that he had CLL, and he acknowledged that every time his biking performance was declining, he knew it was time for more Rituxan. He was fervently hoping for Humax to be approved as a replacement for the Rituxan. Long story, but I could not hold him up as a "poster boy" for continued reliance on Riutuxan-alone over the long term, especially compared to other available options.
In short, I guess I evaluated them all much as I might comparative investments in this crazy economy. Downplay the short term performance, look at the real fundamentals, look at my OWN circumstances, and try to predict the long term outlook for the dollar. Add 'em up, recognize that there is no perfect decison---only good ones (and probably more than one good one)---and place your bet.
My decision was complicated by the cloud of H1N1 Flu hanging over us all at this moment. Unfortunately, my symptoms gathered steam now. I could not procrastinate any longer, hoping green tea extract would keep it all at bay until the flu season subsided. It had to be now. So I basically announced to my employer that I would have to work from home via computer for the next few months, in a sort of self-imposed quarantine. He thought I was over-reacting, I think, but said O.K. Yesterday, 25% of the staff was out sick. I think I got that call right.
Since posting my brief decision for all to see, I was contacted by a very kind lady who said she made the same decision I did. She said she has been in complete remission for eight years. One experience such as hers does not make a trend, but it sure was nice to read. Eight years would get me to 71---a far better outlook than where I was last week.
Alan
