Hope is stronger than fear, or stop me if you’ve heard this one before

I’ve blown it by not posting the past three days but I feel adjudicated by reading The Cuckoo’s Calling by Robert Galbraith (JK Rowling’s alias). I’m not finished but it’s an enjoyable read.  Lots of explanatory stuff, very little action. I’ve not felt great, which I’m trying to get over by Thanksgiving. Good and bad days are unpredictable, in spite of the painkillers, heated blankets, sunny days. Acupuncture helps a bit, but the current set-up makes it difficult to receive the amount of treatment needed to establish pain control.  With me it’s an evolving and complicated game of whack-a-mole for which consistency is critical. Alas, I’ll deal with what I have and hope for better days soon. I’ve got 5 acupuncture seeds in each ear and 3 on my right hand fingers to help with my breathing and skin toxicity. I need about 20 more for bone pain…

The biopsy results are in… my tumor tissue (from the collapsed left lung, no less) is PDL1 positive! Whether this is a result of chemo or Merck’s different assay (as opposed to Genentech’s), I hope it’s predictive for my response. A few more screening tests and with any luck at all I can start the trial.

The biopsy was a feat of efficiency, done at Ronald Reagan UCLA Hospital in Westwood (LA). From the valet to the cafeteria, I was impressed by the precision of the hospital’s well-oiled machinery. My nurse from Yorkshire (Leeds, specifically), England chatted cheerfully about her travels, set me up on the CT scanner bed, and injected a cocktail of morphine and Versed (midalozam) into my IV. I don’t know if the amount was insufficient or the lidocaine applied topically to my chest hadn’t taken effect, but I definitely felt the stab through my lung when it came. Yep, I surely did.  The resident who performed the procedure (a handsome young guy named Dr. McGraw) told me to take a breath, hold it, then plunged the giant needle in my chest (through the front, Pulp Fiction style). Once the thing was in he left it there, intermittently dropping tubes for samples. (Hubs says it’s much like drilling for core samples, though with more primitive implements) He clipped away as if he were pruning roses. I wanted him to start whistling but he didn’t. Then it was over. I was alert and ravenous, eating ancient flight pretzels from the bottom of my backpack, orange slice candy, whatever I could get my hands on. The doc came in to check on me, shoved a heated blanket roll under my back to keep me on my side and said an x-ray wouldn’t be done since, well, the lung was already collapsed. We chatted a bit about the difference between PD1 and PDL-1 inhibitors, what was edible at the cafeteria, then he wished me luck and for all I know went back to his office for Playstation.

Now that I’ve cleared that hurdle I’m faced with a bit of dilemma. A slot in the (Clovis) CO-1686 trial – the one I’ve been waiting over a year for – may open up in the next two weeks. It’s still in Phase 1 dose escalation, but it’s so close that I’d rather risk getting on now rather than continue waiting till it reaches Phase II.  As I’ve mentioned before, I believe my chances of response to that drug are much greater than to the Merck Anti-PD1 agent – which is the clinical trial I’m about to embark upon. I’m in a quandary, because starting the Merck trial would prevent me from the Clovis trial for now, and possibility of response is only 24%. BUT, response could be durable, lasting over a year. There are also scary side effects, whereas the Clovis drug has mild to none. The duration of response to CO-1686 is in the range of 6-10 months but it’s a blissful, if short period, I hear. I’m torn.

Hubs has a business trip to Nashville and I may join him. If I don’t make it to the end of the year at least I can say I went on one trip in 2013. For now I’ll focus on giving thanks for a good run, and remember my Dad, who passed away exactly 6 months ago on the 28th. I’ll light a candle for the fallen, say a prayer for the lost, and rally the universe for grace to blanket each one of us.  May we transcend the darkness, each in our own way.

Love to all.


6 thoughts on “Hope is stronger than fear, or stop me if you’ve heard this one before

  1. Hi Jazz and lovely to read you, as always. Glad the biopsy went as well as can be expected. Bloody hurts though. I am lining up for the Clovis trial, and will also have to have a new biopsy of the needle aspiration type! Wish they hadn’t told me that. Not sure how the newly discover brain mets factor in – I get MRI results tomorrow. Fairly anxious I must admit.

    Really hoping you get on the trial!

    Tale care, well as much as you can. Alternatively, take your drug of preference!

    • Oh Gail, I am greatly distressed by the brain mets discovery, and the new difficulties it entails. I wish there was something I could do to help. Can you hire a driver/helper, perhaps someone on a foreign work visa? I suggest it as our friend in NZ did just that and it was the best thing he ever did (well ok, they’re a couple now, but that’s beside the point). Will you have your biopsy in the waiting period before your next MRI? Will you do WBR first, then the Clovis trial? Sorry about the questions… please keep us posted.

      I’m rallying the universe on your behalf and tying a prayer ribbon for the dissolution of each brain met!

      (((Big hugs)))

  2. Jazz, I also very much felt my last biopsy and was glad I’d been working on self control as it was important that I not move and flinching would have been the natural response. Tough girls, aren’t we. Interesting that given the fact that your lung is already collapsed you don’t have to remain motionless after the procedure.

    I think that’s great that you were positive for PD-1—one more card in your deck. Given the opportunity, I might play the Clovis; give them some time to figure out more about these Pd-1 agents, including the side effects.

    Either way, glad there are still paths for you to travel. Keep on keeping on and a Happy Thanksgiving to you.


    • Dear, dear Linnea – you are as tough as they come. So proud and reassured to be in the company of brave girls, unafraid to cast light on paths untrammeled. PM me any time, I have strong shoulders and open ears – I think of you often, even though I’ve not demonstrated it. I hope your new setting allows you to reflect and maintain the strength and peace you need to keep trucking.

      Anytime you want to head out this way on a wild hair, a room awaits 🙂 Best of luck to us and may merry and bright find you this holiday.

      Much love, Jazz

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