Seriously?

I started writing this on Tuesday morning. A lot can change in a matter of days. Emotional roller coaster feels like a hackneyed and over-used metaphor, one that doesn’t feel adequate to describe the last 48hrs. 

I want to be true to what I felt and wrote a day or so ago, so the tense might jump around in this piece – for any grammar pedants out there, you’ve had your warning. 

In the run up to being on the trial I am looking for signs of hope or good luck. Originally they were sending my eligibility and radomisation request on my birthday. That seemed like a good omen. The very fact that I got the place offered to me after it had previously been allocated, that seemed pretty serendipitous too.

I’d lost the diamond out of my 40th Birthday ring that signifies 4 decades and 4 family members. It was my birthday, the stone was missing, this didn’t seem like a great sign. However, in the dark of the theatre I found the rock lying on the floor. I had found it again, almost instantly. Surely I’d get through elligibility?

I have jumped through every hoop I have been asked to, I’ve anticipated hoops and removed them before we got to them. I’ve organised my own scans with the help of proactive and kind teams in other hospitals.  I have collected my own pathology reports from hospitals in person, scanned them and sent them to other hospitals. I have checked on the nurses screen that ECGs have actually been whizzed on internal systems.  I have been ‘on it’ in the most full on way possible – even for me.

Yet we are still waiting…
I was told I’d have the go ahead and details of which arm I’m on, on Friday…
Monday at the latest…
Yet it’s Tuesday and no news.  

I am sitting in the clinic waiting to see an oncologist for what is supposed to be Day 0 of a new clinical trial. I’m due to start tomorrow, yet I do not know if I am eligible for this trial (I’ve checked myself, but I don’t get to decide) or which arm I will get.   I feel physically sick with anxiety, hope, excitement and panic. An uneasy compound of conflicting emotions. I am emotionally and physically exhausted. 

I feel like I’m at the finish line, but there is no one here. No cheer.  No accolade. I am wondering if anyone knows I’ve sprinted this race?

So I am literally waiting to hear if I get immunotherapy. I’m in a windowless side area of a hospital lobby. Amidst the juxtaposition of hospital buzz and sedentary cancer patients (and their loved ones), standing and sitting in lines. All of us facing the screen waiting for our name, our fate and our next step.  Slowly people are called in.

My husband and I aren’t talking. Not because we are in a grump with each other, but because there is nothing to say or do until we know. Everything else is suspended in time. As a couple with young children you long for one to one time. This is not the vintage of time or location we need right now.

We are biding our time, until it’s time.

Just over an hour after our apt we are called. Not bad. 

From my research as someone at the second line treatment phase (second attempt at a drug or drug combo to control the growth and spread of a secondary cancer and/or local reoccurrence), this trial is the only way I can get immunotherapy in Europe (and possibly The World) at the moment. That is  without robbing a bank, changing the genetic make up of my tumour or bribing a lab technician in a large pharma company. 

I’ve been at this stage before for my first line treatment. I got the placebo.

This time It’s an open label trial so I will know at the start of the trial.  This is because it’s a much earlier phase trial and I’m guessing because the control is a tablet and the arm open is an intravenous Atezolizumab and a tablet of an AKT inhibitor called Ipaterstrib. Still struggling with the pronunciation of the latter. Atezolizumab is now a word my 10 year old can pronounce. I don’t believe in dumbing things down for kids.  After all, ‘immunotherapy’ isn’t much easier to say.  

As yet another aside, when I first talked about immunotherapy with the kids, at the beginning of the year, they were fascinated to hear how that worked.  My son, who fancies himself as a future zoologist said, “Mummy, but how did they find out that Emu’s could help people with cancer?”. Oh how I laughed.

I like the idea of emunotherapy. Frankly I’d try anything right now. 

BING! I’m called in to meet another new oncologist, who works with the one I saw just under three weeks ago. To my relief, I have been accepted to the trial. Phew! It literally was the last place as it has closed globally for review. We’d secured it. However they still didn’t have the go ahead to randomise me (drug lottery). So I was on, but we still didn’t know which drugs I would get. 

Adrenalin was switching on and off like a strobe light. I wasn’t sure I could take much more. I’d already experienced a kind of primeval emotional outpouring on Sunday night. A kind of release that I hadn’t really experienced since being diagnosed in May ‘18.  I was a bit freaked out by my reaction, but it was probably proportional and I felt a lot calmer the next day!

After  another blood test and another 2hr wait in a hospital chair – I was free to go. To go and wait somewhere else. My husband had taken the day off work, but we still didn’t know if I would get immunotherapy, I was provisionally booked for the next day.  

Right now I could do nothing more but go home and wait for the drug sponsor based in a different time zone to get into work and process our randomisation request. 

The way this trial works is you either get the control, or one of 8 other drug combinations.  Capecitabine (a tablet form chemo) is the control, then the other 8 combos are like a cocktail menu with Atezolizumab as the gin or vodka base and the other drugs they combine with it are mixers or other little spirits to pep up the Atezo.  I guess the drug companies aim is to see if they can give Atezo without chemo for it to be effective. What they are seeing right now is that the Atezo works in some PDL-1 positive patients when combined with a taxane based chemo called Abraxane. FDA have approved it in the USA for first line. I wouldn’t be eligible though. NiCE have yet to approve beyond expanded early access programme, due to cost and narrowness of the indications (conditions/disease areas it can be applied to).

OK, this post is starting to feel as drawn out as the real thing was and I’m not sure I can go over it again, so I’ll cut to the chase.  The oncologist called me twice that same Tuesday evening to advise of changes to the trial structure, ratios etc.  We didn’t want to wait any longer for treatment to begin again, so even at a 50/50 chance of Atezolizumab we pushed the button on the lotto machine (it is literally a computer programme).  

I got the chemo.  

8th October 2019 (finished on 10th October when I could bear to write about it again).

7 thoughts on “Seriously?

  1. I have always known you as a positive and determined person but today I want to say “it’s so s**t that life is a lottery!” You are a fighter though and my thoughts are with you every step of the way. X

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  2. Argh! So sorry to hear that Claire, the joy of getting on the trial Last minute, to then get hit with finding out for the second time you didn’t get the treatment you wanted, and needed to get, just completely sucks!
    These blogs are an amazing way to highlight how what can be perceived as a lifeline from
    outside in, is such a lottery, and how it takes it toll…

    Absolutely gutted for you xxx

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  3. It feels so wrong. So not a reflection of the effort you put in to get on the trial. Not a reflection of your status as a young family, an otherwise fit and healthy woman of no health vices. I know, it’s just random. Like the cancer in the first place. It makes me weep. It must make you howl. I want comfort from those little nods from the universe too. I want them to have meaning. I want the lost house buy to mean that there is actually a better one around the corner. I want this random choice to mean the next one for you is not random but something that balances out the injustice.

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  4. I want the lost diamond – found, analogy to be a real thing for you.
    That this ‘emu’ is not the one for you and your next step will prove to be better than this could’ve been. I pray to the might of the universe that your immense efforts are rewarded. Love you xx

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  5. Oh babe, I’m so so sorry you’re going through this and echo all the loving words of those above. Can’t say anything that feels an adequate response to this news. Just sending you love and energy and admiration as always. Xxx

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