Today was clinical trial meeting day. Dr Pooja (also known as Dr Jain) had invited me over to the once seen on reality TV “St Jimmys” hospital in Leeds.
Louise, my stepdaughter, made her way over the Pennines in her new Peugeot and, after a battle to find friction with the icy road, we departed to Leeds.
My sister joined us there after a nuisance of a train journey designed to advertise how the “Northern Powerhouse” plans that usually get cancelled to fund London based transport schemes should actually get a justified investment of taxpayers’ cash.
The large multi-storey car park at the hospital drew us towards disabled parking spaces but, alas, we discovered that most of the hospital’s target market have a disabled badge and ended up miles away from the entrance in a normal space.
On arrival, we were taken into a room by Wendy, who I assume is a nurse, who took responsibility for reading consent forms and disclaimers. It seems I have now given permission for them to share my blood and 2016 biopsies with Cancer Research UK. Given the guarantee of death for declining to do so, I grabbed the pen and signed.
Although I’d advised Louise that this process could be brutal, she wasn’t prepared for the news that only 5%-7% of patients who get to this stage will receive any treatment with experimental drugs. My likely departure is tough on a lot of people, but most of all my kids.
Eventually we were called in to meet Oncopooj who introduced us to two other people in the room. I’ve still no idea who they were, but will assume I’ve assisted with their medical training.
Oncopooj commented on my palsy, recapped my recent medical history and clarified a few pieces of information. What did come out was that I’d need a blood test as I’d had no recent biopsy. My original 2016 NHS biopsy would also work its way down to the Royal Marsden hospital for testing. And, although I’d previously been told my BUPA funded spinal biopsy was useless, there was a promise to request the tissue from that anyway.
The conversation revealed Oncobabe had told them I didn’t need a new biopsy for her treatment. But it became clear that a new biopsy would help them determine more effectively if I am suitable to join the trial. That triggers something for discussion in my next meeting with Oncobabe. Oncopooj wasn’t going to offer to collect one herself.
That, and a long wait for yet another blood test, pretty much concluded the meeting. A couple of months before I find out if I’m accepted for trials. I had a 2% chance of afatinib. 60% chance of osimertinib. Now a 5-7% chance of wonder drug three, or a placebo. I’d rather not get the placebo.
It’s a long shot. But the number, while low, is not statistically irrelevant. And even if accepted, the idea of years of extra life is probably beyond these new treatments.
At the very least, I’m now a statistical contributor to an important medical study. It might, in a few years, be responsible for saving your life. Or the life of one of your children. I’d love to say that’s my reason for attendance. But no, that’s the consolation prize for if my efforts at self preservation fail.