Finally the hoop jumping paid off

I want to write a long post about this and maybe later I will or maybe this will turn into one. After all it took a bloody long time to get here. Twenty-one months of fighting cancer and 13 months fighting the medical system for the one immunotherapy drug in trial that ‘may’ have some hope for metastatic triple negative breast cancer.

Breast cancer is still one of the leading causes of death in women (despite it being and I quote an acquaintance ‘one of the best cancers to get’!!!) and despite many more people surviving breast cancer, there are still too many lives taken. Just this week another young mum in my support forum was taken too soon. Leaving 3 young children (below 5) and a husband in the wake and destruction of TNBC. A disease with no cure or targeted therapy to control it.

Due to this lack of treatment, finding a cure or even a treatment to control spread could be big bucks for big pharma. Only 15% of breast cancers are triple negative, but it’s still a decent segment for big pharma to make money from. As a result of this there are lots of different clinical trials for triple negative patients. On the surface this is good, but the reality is finding them, working out how to get on them and passing the eligibility criteria are complex tasks even for the most tenacious and energetic terminal cancer patients. Almost an oxymoron in itself. It’s a wonder anyone meets the trial equivalent of an algorithm. All this searching and hoop jumping just to be a lab rat for future triple negative patients and possibly buy yourself a few more months in the process.

The first trial I found was perfect and gave me immunotherapy as a given as it was the combo they were trialing. Partnerships were with old chemos or additional triple negative targeted therapies. Everyone got immunotherapy, Atezolizumab. An attempt to find Atezo’s killer combo (or survivor’s combo). Unfortunately this immunotherapy trial wasn’t available to me as my reoccurrence/secondary cancer had been discovered in less than 12 months after my primary diagnosis. In short my proactive nature which had insisted on the scan that found the tumour was 4 months too early to be eligible.

Other trials I found I wasn’t eligible for because my tumour wasn’t big enough yet! Frustrating doesn’t even cover it. Eventually I found a trial that I was eligible for by 1mm of tumour measurement. This trial involved months of travelling to the research hospital only to get disease progression and find out I was on the placebo.

The second clinical trial was another mission to get on. Loyal followers of this blog will remember that. This trial yielded another 4hr round journey to get the standard or care drug I could have got on my doorstep. A journey worth it for the chance of getting Atezolizumab. A money can’t buy drug. Those of you playing attention know that that time I was rewarded with the control. Atezolizumab missed again. I was the last person to get on this trial globally. There was a part 2 to this drug and if I met certain eligibility criteria the second part could be open to me. It was beginning to sound like the bonus schemes most of the consultancies I’ve worked for offered. Unlike those, stage 2 finally paid out. All the hard work, hoop jumping and waiting had delivered.

Today I am proud and frankly astounded to report that I have Atezolizumab running through my veins. Hopefully playing with it’s wingman chemo Eribulin to finally have some impact on this aggressive and relentless cancer. Let’s hope it buys me some more time and doesn’t make my quality of life too grim with the toxicity.

All glamour in my cold cap, but happy to finally be giving immuno a chance to work.

Who thought I’d be celebrating getting my 8th chemo agent and an off label drug. Funny where life takes you.

Bit like this journey, the post didn’t end up being short either. However, did beat Brexit to a different post.

30th January 2020

Magpie Scientist (Poem 10)

Picking up promising words that glisten in social media,
Forum posts, global medical press articles and Google scholar,
Emerging treatment targets buried deep in academia,
I read early clinical trials celebrating 9 months extra, with horror.

I feel relatively well; how can this be?
I prepare for the worst, but hope to defy statistics.
I refuse to believe this will happen to me?
When is the time to be positive or pessimistic?

Meticulously searching for eligible, global, clinical trials
Does my tumour have infiltrating lymphocytes and is this best?
Wondering if I’m allergic to Chinese hamsters in vials,
Ambiguity over different antibodies for PDL-1 status test.

Targeted treatment options limited,
I’m on the very edge of science, searching for hope. 
Cancer cells lurking and all I want is to get rid.
Researching into the night; no time to mope.

Finally feeling I have narrowed my search,
I’m no scientist, but I’m driven to discover insight,
Back and forth between science and my life I lurch,
Being my own advocate, following the path I think is right.

Acquainted with this secondary tumour for less than a week,
Meeting the Principal Investigator, whose language I only partially speak,
Eligible through the reams of small print, but waiting for scans,
Not spread too far, big enough to measure is the result we seek.
Awaiting the results, continuing to read, making back-up plans.

Three weeks from secondary diagnosis to placebo/immunotherapy in hand,
Obsessive nature; no sleep; tenacious yet polite; everyone moving at speed,
Navigating changing hospitals; biopsied bits of tumour flown to distant land,
Late night forums; wonderful women who’s advice I heed. 

Laser focus sacrificed presence now, for longer with my children,
Shutting down the outside. To go after what’s inside.
Driven to search for other ways,
And now I may have lots more days.

Started March 2019 finished July 2019

One of the many pages of post it notes and late night scribbles