Simple. An underrated idea. Or is it? The idea is incredibly rare and elegant to me. Nothing's ever simple or straightforward anymore, at least in my world. Perhaps I need to make that as much a focus as possible, strive toward that goal in all areas of life. I might make things harder than they have to be. More than likely, that's just the way it is, and more so when one is ill.
I saw the oncologist yesterday, prepared for a "christmas light" PET scan report. While it wasn't entirely negative, it confirms what we know: current machines aren't advanced enough. The "small ill-defined nodular densities involving the right lung zone" were "too small to be evaluated with PET". We know the bastards are chomping away at the sugar, multiplying just as fast as they can, but they're mere tweens and flying just under the radar.
A somewhat complicated discussion ensued. My (simplistic) side—put me back on Tarceva now, it'll wipe the disease down, I'll be on my way for a couple of years. His side (despite saying via e-mail that he would treat me "with Tarceva at least") was–wait a couple of months, then use Navelbine (a systemic, hard-core chemo), but you'd be on two weeks out of three". Translated, this means I'd go in for chemo every week with the third week being a break…so I'd feel shitty ALL the time. What kind of a life is that?
Long story short, in which it was never clarified why he didn't want to immediately return to Tarceva, I said I was more interested in targeted therapy. We know Tarceva works, I want to eke out as much time on it as possible and save other medications for next time. (Later it occurred to me that we may never know if I became resistant to Tarceva, because it was combined with Alimta. We'll never know if Alimta or Tarceva would work as single agents for me, or for how long. Did he want me to use Alimta two years ago and save Tarceva for last? Does he want to wait two more months to ensure enough of a system wash so Tarceva will work again, or does he just not like it? Hmmm.)
What about clinical trials?
He said the clinical trial department was down at the moment (no details), why don't I go over to UC Davis and talk to (Dr.) Gandara and see what they've got to offer? ($ Ka-ching, ka-ching $ !! went off in my head from when I got 2nd opinions at UCSF and Davis) To which I then requested a referral (Kaiser would cover it). He picked up the phone, got the clinical trial coordinator at Davis, zeroed in on a trial using toxic goo from a Japanese sea sponge, placed a request for approval. Ostensibly the paperwork would be sent through the bureaucracy, approved, and the lung cancer expert at Davis (or more likely someone on his team) would evaluate me, I'd get on the trial, or at the very least, he could recommend a particular treatment, and the heat would be off my oncologist. Not too hard for a win-win situation, right? I get the feeling referrals aren't difficult to get, but they're saved for last ditch efforts like these…because Kaiser can't offer me a clinical trial like now. But why is that?
Let me interject here the importance of having an advocate along for appointments like this. At the time, I couldn't think of the right questions to ask. After a lengthy discussion with my friend Julie—a former reporter for Forbes Magazine—I saw the holes. I just hope he'll (the onco) be straight with me when I email the myriad of questions.
He said I only have three referral options for clinical trials: UC Davis, UC San Francisco, Stanford University (where the bro-in-law got the 3-organ transplant). All excellent facilities, right? UCSF has nothing for my situation right now, Stanford has a fantastic trial for a substance called XL-184 with or without Tarceva which is also at Davis, and Davis has two other trials that may be suitable–one for the sea sponge stuff–Halichondrin B, and one for Tarceva + Erbitux (similar but targets a different cell "pathway") which looks interesting. Supposedly there's one for sorafenib (Nexavar, which is currently only approved only for kidney and liver cancer), but I didn't find it on the website. UC Davis wins for most number of lung cancer clinical trials that I may actually be able to participate in, and bonus points for having at least two great shopping outlets on the way (keep that in mind, people who want to accompany me to my appointments…)! So, this is good, I can't complain.
I need at least two more years. That's how long it might take for some new therapies to get to market, Zactima (vandetanib, whose phase III trial is completed) being one of them. Those just entering trials will take longer, but I'm hoping it'll be like technology, where it starts to take half the time to get twice the bang.
Before I left he said, "If nothing else, I'll treat you with Navelbine, with or without Tarceva. Or maybe Tarceva, with or without Navelbine." He also told me the three questions I'm supposed to ask the Davis people, but the only one I can remember is the one about what treatment they'd recommend. What did I do with that pocket tape recorder?