Thank you to Dr. Keong, Dr. Tom Snow, Dr. Matthew Burge, and Merck. This is our family that you saved.
A small disclaimer
I write to unload all that has happened, it helps to free up my mind and provide clarity. This can become chaotic at times, but overall it really helps me see things as they are and can be. I hope that by sharing my thoughts and experiences something will resonate with you.
As an immunotherapy super responder, I became “one of the 1% of the 1%.” in just 3 days, and part of the cancer cure equation.
My success was the second time a Cholangiocarcinoma patient had succeeded in becoming tumor-free from a Stage 4 Metastatic setting. Merck’s International Keynote trial 158 had worked.
In October 2016, I was out on my normal Saturday morning 40km cycling ride with mates, when I became overwhelmed with tiredness, similar to the onset of a bad flu or virus. One week later (November) I was diagnosed with Cholangiocarcinoma, an unbeatable terminal cancer that gave me just 6 months to live, and no possible curative outcome – it was just a matter of how long I could last. Surgery held a very slim chance, but the stats were not kind to this outcome either.
I remember thinking “Cholangiocarcinoma” – never heard of that cancer, can’t be that bad – hmmm how wrong was I.
However, whilst I could not control the thoughts that relentlessly avalanched through my mind, I quickly came to realise, that I could control how I thought on them. This became such a critical understanding, it allowed me to find that next step forward, no matter how insignificant or small it seemed in the moment, and those moments seemed endless and suffocating.
What lay ahead of me was not digestible to my unprepared mind, but in hindsight focusing on that next step saved me from defeat, it removed the murky demons of my statistically certain demise and implanted a small sliver of control. This small sliver also shielded me from the invasive realities of others who were politely certain of my impending demise.
Surgery became my first opportunity –
- Called a whipple it took 7 surgeons 12 hours
- In total I have now endured 25 hours of life-threatening surgeries, followed by
- 22 months of highly intensive chemotherapy and immunotherapy treatments.
This has been a physical, mental, and spiritual challenge beyond my comprehension. My vision and my future had been ripped out of me, I suddenly became blind, numb, and very scared as I fought for clear air. When I did find it, I seemed to instinctively galvanise my self-talk, around some very basic raw and crude words – “Steve – get up, get up, get up – take another step no matter what it is, find the momentum. Momentum is life – keep moving even if it is only within my mind” – Looking back these words were momentum they gave me the beginning I needed to make.
Ok, so here is where it gets very murky and tricky to explain. When I began researching, Claire and I could not find anyone who had succeeded, we were desperate to find anything that gave me hope that I had a chance.
So I now have the opportunity to share parts of my story and my more inner thoughts in the hope that it will help you. I would like to underline that I could see no successful outcome until it was. What is important to understand, is that I continued to keep the lights on and doors open to opportunity despite the stats saying otherwise.
Unfortunately, a Cholangiocarcinoma diagnosis, like Pancreatic, provides very poor results. I strongly believe that a significant factor in changing this will be found within the globally connect patient and it’s up to we patients to share any success.
What do I believe has helped me?
Make no mistake, Keytruda saved my life at the last minute of the last hour – a true “Hail Mary” pass by Dr. Matthew Burge, but that would be way too simple to leave it there. I had many other significant obstacles to overcome and a good dose of luck before I had ever had the opportunity to meet Matt and his team.
Below are personal traits that seemed to have followed me into this cancer challenge – I believed they formed the foundations that got me through many tight spots – and I have been through a few.
Acceptance is my reset button in life. Hitting this reset disarms and de-escalates the overwhelm, it shone a light on the treacherous creeping shadows of fear, it allowed me to breathe and begin finding a way forward.
Willingness is the stuff of magic. Humankind has defied gravity and achieved so much powered on an unconditional willingness to succeed often in the face of overwhelming proof to the opposite. Willingness helped me get back up without question.
Writing it all out –
Writing gave me a sense of control, its immersive, engaging and it opens up a parallel world – a world full of new possibilities, this became my go-to. place to rebuild. I essentially wrote myself out of a bad story and into a much better one.
Fear and Distraction
Although fear remains ever-present, it became less intrusive as my mind became focused on what I could do.
Molecular / Genomic profile –
Matt suggested I read the book called “The Gene,” it was difficult at first, but then it all began to fall into place alongside my experiences within the world of immunotherapy. Mutations really do Matter, I am proof of this. If you are reading this as a patient get an IHC test and or a Molecular / Genomic profile completed, it is so important – this is something you must ask for and insist on.