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Life on a phase I clinical trial: A blog by patient advocate Lesley Stephen

Last updated on 20 May 2020

To mark International Clinical Trails Day 2020, we spoke to breast cancer patient and advocate Lesley Stephen, about the positive impact a phase I clinical trial has had on her quality of life. 

When I was told in late 2015 that I’d secured the last place on a phase I clinical trial, I didn’t in my wildest dreams think I’d still be on that trial almost four years later and thriving. I’m a mother of four and was diagnosed with de novo Her2 breast cancer that had spread to my liver, lungs and bones – then a year later it spread to my brain.

Following my diagnosis, I rattled through the standard treatment lines fairly quickly, with 12 brutal cycles of chemotherapy dramatically reducing my quality of life. I knew of a couple of women who had done incredibly well on clinical trials, so I asked my long suffering and very patient oncologist to find a trial for me.  It took some time, but after the latest ‘miracle’ drug for my her2 cancer failed and I was told to ‘get my affairs in order’, he found the last place on a trial in Glasgow.  

A week later, in November 2015, I travelled to Glasgow to meet Iain, the lead investigator on the trial.  After consenting to go on the trial, and spending a few days getting prodded and probed, I finally started on the trial on day four.  

I’ve looked back at my diary from the time, and here’s what I wrote:

It’s a very simple protocol, 6 little yellow pills every morning, alongside Herceptin every third week.  I will go through to Glasgow every week for six weeks to get assessed.  After nine weeks I will have another set of scans to see what’s happening with the cancer.  At the moment, five days in, I think I feel some improvement.  I don’t want to get too carried away with it, but my coughing is less and I’m breathing better.  I can’t quite make all 50 steps from our basement to the loft in one go, but it feels much less like the personal Everest it used to.

Amazingly, after five days I had already noticed an improvement! And then at my first set of scans nine weeks after starting the trial, I received the news that the tumours in my lungs had all but disappeared. S222616 (or Epertinib as it has since been renamed), was destroying the cancer, and with none of the side effects of chemo. 

Four years later, I am still on S222611. Since I started on this trial, I have cycled across the Golden Gate Bridge, trekked in Zion National Park Utah, sailed the coast of Croatia, climbed the Duomo in Florence and much more.  I’ve seen my eldest son start at university and my youngest daughter enter her last year in primary school.  

Because I’ve felt so well, I have also been able to get involved in campaigning – specifically to enable easier and wider spread access to clinical trials for other metastatic cancer patients.  While I no longer ‘work’ in the formal sense of the word, this amazing trial has given me the extra time to work as a patient advocate for the National Cancer Research Institute and for the International Cancer Genome Consortium. I also work with patient led groups, such as METUP UK, to effect change.

Given the barriers that exist to enrolling on a clinical trial, such as easily finding trials available and stringent exclusion criteria set by pharma companies, it is a wonder I made it onto this trial – and even more of a wonder that it is still working, more or less.  In the last year a few small tumours have popped up – one in my lung and one in my liver – but the plan is to remove them and to stay on the trial as it’s still keeping 95% of the cancer away. Should Epertinib stop working for me, I’d look to enrol on another clinical trial if possible, instead of going back to standard treatments.

I feel incredibly lucky a clinical trial has given me this chance to extend my life and I will continue to campaign for all cancer patients to be given the same opportunity.  

Lesley Stephen.jpg
Patient advocate Lesley Stephen
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