25 Hours of Multi-organ Surgeries + 2 international clinical trials

In July 2017, I found myself facing an unthinkable reality: a stage 4 terminal cholangiocarcinoma (CCA) diagnosis with just weeks, if not days, left to live. My younger brother had succumbed to the same non-hereditary cancer two years prior, leaving me to navigate uncharted territory.

It was then that Dr. Matthew Burge presented me with an opportunity to participate in an international clinical trial for pembrolizumab (Keytruda), a highly speculative chance that became my lifeline.

Despite being barely able to hold a pen, I managed to sign the documents for the trial. Astonishingly, I responded to the treatment within just three days of my first infusion. Over the course of nine weeks, this response was officially confirmed as a complete and full NED (No Evidence of Disease). During this time, I went from being mostly bedridden, almost unable to sit up, to walking normally. In doing so, I became the second-ever known CCA patient to succeed from a stage 4 terminal setting.

Today, I am in my sixth year as a participant in the Keynote 158 clinical trial. This unexpected and miraculous journey has inspired me to create the Cholangiocarcinoma Foundation Australia, and separately Cholangiocarcinoma Foundation New Zealand focusing on patient empowerment and parity through next-generation patient-advocate strategies.

A Grateful Acknowledgment:

I owe my life to the medical professionals who turned the seemingly impossible into reality. Dr. Tom Snow’s surgical skill, Dr. Matthew Burge’s leadership through two international clinical trials, the medical team administering Pembrolizumab, and the support of my wife Claire and the Gold Coast Ambulance team were instrumental. James Allison and Tusaku Honjo’s collaboration on the checkpoint pathway, earning a Nobel Prize in 2018, laid the foundation for this breakthrough. Their combined efforts have allowed me to share my story of hope and resilience.

Seemingly Insignificant Moments:

My journey underscores the power of seemingly small moments that shape our lives. Dr. Kwong’s personal interest in my cycling stories led to his extra effort in discovering a potential clinical trial led by Dr. Matthew Burge. Kwong’s willingness to go the extra mile and our immediate decision to say yes to the clinical trial opportunity set the first domino in motion. Dr. Burge’s emphasis to me that engaging an oncologist that not only knows of the diagnosis but has current expertise and experience with that specific cancer diagnosis became the foundation of my success. These profound moments drive my mission to empower others facing similar diagnoses.

In Summary:

I am here today, grateful for the dedicated life-saving interventions, the medical breakthroughs, and the unwavering support of those around me. My success story, as unlikely as it may have seemed, provides a testament to a saying I carved out of difficult lived experiences: “My reality is mine, and your reality is yours.” It’s a simple yet profound realization that allowed me to dare to look beyond the impossible to new possibilities and then set about making them real. You simply cannot achieve this if you carry the weight of other people’s realities. As awkward and unsettling as this was, I had to release myself from that burden. This insight was the source of my personal resilience and, I hope, a beacon of hope for others. It’s an example of what is possible.

As my first clinical trial nurse so wisely said; “Steve, I know that cancer has taken so much from you, but it can also give back so much more if you let it!” – IF YOU LET IT! These words resonated with me, and with this realization, I set about getting out of my own way. I allowed my innate willingness and potential to rise up and lead me forward.

My pictorial journey