Thank you, Valerie Harper

…for putting your brave face to lung cancer, for calling it like it is, for loving life and having the courage and fortitude to attempt and withstand grueling experimental treatments in the pursuit of time. I and the lung cancer community salute you and your dancing!

It’s time to play Find the Next Rock to Hop On again.  After three months of feeling better than I’ve felt in a year, the August CT scan showed a 1.9cm ground glass opacity (in my only lung). Clearly Tarceva the 3rd time around isn’t keeping the bulls in the pen. I’m now almost 5 months out from the last carboplatin-gemcitabine infusion (May). I’ve tried to get my oncologist to order a round of chemo, but she probably thought things would move more quickly. Sadly, pain level has escalated from 1 to 8/10 in a month. I believe radiation to my bone mets would bring relief, but will it extend my survival or weaken me further?

Genentech sponsors a Phase II trial of an Anti-PDL1 agent (explanation of mechanism of action here) which I’m interested in. Immunotherapy has been the star of the last two ASCO conferences, so it’s got buzz and bucks to back it up. The preference for Genentech’s agent over the more well-known Anti-PD1 agents Nivolumab (BMS, fast-tracked in some cancers) and Lambrolizumab (Merck, fast-tracked in melanoma) is that it doesn’t carry the pneumonitis side effect.  Important when one only has one lung. I managed to line up my ducks, order 15 unstained slides from my 2011 biopsy, drive to the pain-in-the-ass location on Wilshire to be evaluated, but dagnammit – the tissue tested negative for PDL-1 expression (must be positive to enroll in the Phase 2 study).  I’ve just had chemotherapy, which induces expression of PDL-1 on the tumor’s surface, but this means I need a new biopsy to retest.  I would’ve had to get one anyway, but now I really have to have one, so I can have enough tissue to test for cMET (another possible course for targeted treatment) and for the Merck Anti-PD1 trial (I don’t really want to do that trial, but there aren’t many options left) as well.

My preference and hope was to get on a trial for CO-1686, a third generation TK inhibitor effective against the T790 mutation (acquired from all these years of being on Tarceva!). There’s confirmation of its lack of side effects, which would be a relief after years of torture.  Clovis reformulated CO-1686 into a hydrobromide salt tablet, and now the trial is in suspended animation while all current participants are stabilized. Word on the street is Q1 2014 before anyone new gets invited into the club.  What’s a girl to do (to stay alive) for 4 months?

There are a couple other possibilities, but they’re not options unless my tissue expresses the particular genetic aberration. The two leading Phase 2 options are cMET inhibitors (one MAb – LY2875358 @UCLA, the other a small molecule – Cabozantinib or XL-184 @ USC or City of Hope). Other Phase 1 options include DS-2248, a Heat Shock Protein 90 inhibitor (available at Loma Linda and UC Irvine), LY2835219, a CDK4/6 inhibitor (I know nothing about this type of agent), and AMG337, another MET inhibitor. This is all very technical, but stating it here is like talking to myself, sorting it out, trying to see if I’m lucid in my evaluation of the situation. My eyes are glazed over too…

Getting into trials is an intricate, stressful, strategic process. Time passes, symptoms escalate, doctors don’t seem to notice or care, trial coordinators don’t return calls –  it’s maddening. Options are limited by several factors, one of which, ironically, is the length of my survival.  Because I’ve survived so long, I’ve had too many lines of treatment. Most trials exclude those who’ve had more than two lines of chemotherapy, 1 EGFR TK inhibitor, 1 MAb (monoclonal antibody), or those who don’t test positive for the required mutation, protein/gene expression, etc. And of course there’s the logistics of location/travel, insurance, timing – all heaped on a patient already debilitated by disease and treatment.  Jumping through hoops is a true idiom for this situation. For me, the hoops are ever decreasing in size while increasing in number.Cosmic convergence has to happen for things to go just right, and having an aggressive oncologist helps quite a bit. My oncologist is a nice person but inexperienced with aggressive, cutting edge treatment. I wonder if I shouldn’t see another oncologist in the same practice – someone recommended by the clinical trial nurse in Northern Cal?

So, what did I do this summer? Not much. Went to Pismo Beach and Hearst Castle while the inlaws visited. Enjoyed the America’s Cup races in SF, partied with Hub’s kiwi friend/ex-boss.  Quite a large kiwi contingency out for the event! Hubs is completely immersed in riding quads and traveling for work. I was, for a moment, fantasizing about having a blockbuster response to immunotherapy and taking up stand-up paddle boarding. I’m still hopeful but I got my reality check when the pain re-declared itself.  I’d started making plans for fall but I’ve pulled back and cleared the slate, anticipating treatment.

I’m reading Joan Didion and hoping I make it to year’s end!

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4 thoughts on “Thank you, Valerie Harper

  1. Hang in there Jasmin! In our health care system, the squeaky wheel does get the grease. And you are one empowered, knowledgeable advocate for yourself!

    Doris says hello and is wishing you the best.

    • Doctors always ask if I’m an accountant or a mathematician. They wonder how I can possibly be as organized and as knowledgeable as I am. Sometimes I’m insulted. I’d love to bury my head in the sand but if I did that, I wouldn’t be alive right now. Or maybe it’s luck, but somehow I don’t think so.

      Love and hugs to both of you! xoxo

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