The offer of the free mouse avatar came as a bonus, really, explained to me when I visited The Angeles Clinic recently hoping to enroll in an entirely different clinical trial, one I had been seeking for about a year over conversations with a contact at Genentech. It was an immunology trial, testing the ability of something called PD-1 to overcome your immune system’s “blindness” to cancer. For some reason, little understood for a very long time until recently, your body’s T-cells fail to recognize tumor cells as invaders, and so pass by them without reaction. The promise of this new therapy, and others like it in development, was to remove those “blinders,” so to speak, so that your immune system goes on the attack.
A couple of years ago, some extremely promising results, including some durable remissions, came from a melanoma study. (Good explanation of which, for those of us non-scientists out there, comes from Jerome Groopman in "The T Cell Army" in The NewYorker). Since then, even more tumor types, with more intractable profiles, like lung and renal-cell, have shown strong responses as well. The best promise of this new approach was that it would theoretically be applicable to any cancer type—not dependent on its site of origin.
I first learned about PD-1 therapy, as I mentioned, from a friend of a friend who works in this area at Genentech. In our first conversation, he called post-treatment scans of chest tumors melting away the equivalent of “onc porn.” This was a scientist who spoke a language I could understand!
On his advice, I flew to Baltimore in October, trying to enroll in a related study at Johns Hopkins. I stayed with an old family friend, saw the Cone collection at the Baltimore Art Museum, and lugged a couple hundred glass pathology slides over to the Hopkins labs. Turns out an aspect of my tumor disqualified me from participation. Bummer. At the exact same time, I got a phone call from my onc at home: bad scan, progression, time to start chemo again. Double bummer.
Ok, so eight months of chemo go by, and I get a new call from my friend: go to the Angeles Clinic in LA. They’re enrolling hormone-positive breast cancer patients—you meet all the requirements. This is the chance!
I consult my onc at Stanford: she says “Let’s go for it.”
I fly down to LA, where the clinic is about a mile from my in-laws' house. I am already planning my Beverly Hills recuperation lifestyle. Like a perfect match.com or eharmony profile, I meet all the qualifications they are looking for: all they want to know is when I can sign on the dotted line. I break out my date book.
Oh, yeah, and one more thing: I need to go through a 28-day “wash out” period. Get all prior therapies out of my system. I am nervous about flapping out there in the wind, but I tell myself I’ll think of it as a vacation, a “chemo cleanse,” and add some daily green smoothie concoction to really round it out. I’m a California girl, after all.
Well. Cue surfer music: “da na na na na na na na da na na na na….Wipe Out!”
Couldn’t take the wash out for even two weeks. Started feeling horrible: pain, nausea, shortness of breath—it hurt to eat. I spent a fruitless day in the ER just to have them tell me I didn’t have a blood clot: “We’re sending you home with the ‘I don’t know why you’re in pain diagnosis’.” My liver function tests started skyrocketing.
Hmmm. All these months I’d been thinking the chemo wasn’t helping much, it was actually holding a giant conflagration in check. There’s a counterfactual assumption for you.
So we pushed the ejection button: I’m back on a new chemo line. And it is CRAZY but I feel so much better. My bilirubin dropped from 3.3 to 0.7 in one week. I’m no longer gobbling painkillers. I am eating salmon and lentils with gusto.
It is disappointing, no doubt, not to be in on this particular wave of experimental therapy, and darn it, I really, really wanted that mouse or two running out ahead and sniffing out the next best route. But it is also strangely relieving to know that the therapies I’ve been on have not been without merit, and that the one I’ve started seems to be effective already for now.
And the best part is, now that we’ve made our move to the Central Coast, looking out my window every day at the ocean is unbelievably restorative (beats the shit out of Beverly Hills—no offense, Baba and Muma). I’m sending the kids to surf camp this summer. I may just join them. I want to learn to wipe out the old school way.