The day after returning from the oh-so-valuable CLL conference in Niagara Falls seems like as good a time as any to post an update.
First, about the conference: I wrote on my evaluation form "I do not think it would be an exaggeration to say that the previous conference, a few years ago, saved my life." This one was just as good.
The previous one opened doors, and my eyes. It connected me to a network of highly informed patients and of doctors and researchers who care enough to interact "on their own time" with patients, doctors like the late Terry Hamblin (who was still replying to my questions just a month or so before he died), or like Dr. Joe Flynn at The James Cancer Center at Ohio State University, who comes to these conferences because he is both expert in CLL and because his mother died from it; people like Chaya Venkat, who recommended Dr. Tim Call at Mayo Clinic. Dr. Call became my "go-to" expert when I realized my local oncologist was a nice guy whose expertise in CLL was, well, shall we say, "limited"? Plus, I would not have known about the PCI trial at the National Institutes of Health if not for Chaya Venkat and her labor-of-love Web site: clltopics.org.
This second conference brought me affirmation that I had made reasonably good decisions (I think; I hope) since being diagnosed and some new insights:
1. a prediction by Dr. Michael Keating of M.D Anderson Cancer Center that CLL will be more or less conquered within three to five years. I think he is basing this prediction on the advent of PCI-32765 and drugs like it. You can see why I feel lucky to be on the clinical trial for that drug (not to mention that it seems to be working fabulously well for me with no perceived side effects).
2. As we get older, the telomeres on the ends of our chromosomes get shorter and shorter, impairing our ability to battle things like CLL. BUT, exercise tends to keep our telomeres longer than they would otherwise be. So now we have a cytogenetic basis for what we already knew: exercise is good for us.
3. The odds of my ever completely conquering my now-chronic sinus infection are slim (said Dr. Susan LeClair to me over cheese and crackers). It'll likely be a lifelong effort to keep it subdued---darned important to someone now dangerously vulnerable to pneumonia because of CLL.
As for me, here on day 67 of my involvement in the clinical trial of PCI-32765, I could not be more encouraged or happier. The grotesque swelling of lymph nodes in my armpits, under my chin, at my temples and cheeks, and inward, into my throat, that was messing up my sleep? 95% gone. The various categories of blood test results are all heading steadily toward normalcy. Especially encouraging are the blood test results for hemoglobin and hematocrit---the scores pertaining to iron, oxygen-carrying capacity, and energy. I look at them and understand why I can walk the 2.5 miles round the lake so much more easily now and spend a couple hours digging up the vegetable garden without keeling over. Remember, as recently as the end of February I had to be wheeled across the Baltimore airport terminal to catch my shuttle bus to the National Institutes of Health.
An amazing array of things had to fall into place to make this all possible: science, money, the internet, and government policy. Yes, politics: The National Institutes of Health is a government agency (gasp!). Plus, PCI-32765 was invented by Zhengying Pan, a Chinese guy from Shanghai working for Celera, the California-based company that pioneered the unlocking of the human genome. Is it a stretch to say he quite probably wouldn't have been there if Richard Nixon and Henry Kissinger hadn't been willing to engage China politically way back in the 1970s?
