But first, there would be no success or story to tell without Claire Holmes, Dr. Cathy Hughes, Dr. Keong, Dr. Tom Snow, Dr. Matthew Burge, Merck, and 2018 co-Nobel prize winners Dr. Jim Allison & Tasuku Honjo. This is our family that you saved.
Claire, Georgia, Zach, and Myself
- Cholangiocarcinoma (CCA)
- Stage 4 Extrahepatic (Distal)
- Outlook – less < 1% survival. 3 – 6 months
At the time I was diagnosed there were no known survivors of a metastatic stage 4 terminal CCA diagnosis. To survive and make it back to my family I would have to walk across the sea of statistics and impossibilities that had me dead and buried before I had drawn my last breath.
Your Fiction My Reality
To walk on water, I had to believe it was possible, despite everyone knowing it was not.
I had to look through the impossible to where it could be and take that first step, and the one beyond that, until momentum reached out and embraced me, lifting me up and above the pain of the now, transporting me to a place where my dreams could breathe and their visions and aspirations were free to rise up and bathe in their own realities and make plans for their outward appearance.
This is how we made it to the moon, and how we do remarkable things today that just yesterday were impossible.
Your reality is yours and mine is mine, therein lies a distinction that saved my life.
All that was required was for me to get out of my own way and let it happen ~ Steve
Stage 4 to NED in 3 days
25 Hours of Multi-organ Surgeries + 2 international clinical trials
It was July 2017 and I was confronting the grim outlook of just weeks, if not days, to live when Dr. Matthew Burge presented me with a highly speculative international clinical trial that could be my Hail Mary Pass.
There had been no previous survivors from a stage 4 and terminal CCA setting. In fact, my younger brother also had the exact same diagnosis and died two years prior to my diagnosis. It is extraordinarily rare that two brothers had the same non-hereditary cancer.
I could barely muster the strength to hold a pen and sign the clinical trial documents for pembrolizumab, commonly known as Keytruda. This drug has become an integral component of one of the most significant modern medical breakthroughs since penicillin.
My unexpected dynamic full and complete response thrust me into one of the 1% of the 1% of all cancer patients to completely reverse a Stage 4 cancer diagnosis. It took just three days after my first infusion to go from bedridden to sitting and walking normally. Three days is my unofficial version, as my complete and full NED (No Evidence of Disease) response was not officially confirmed for another nine weeks via CT Scans.
I became the second-ever CCA patient to have ever succeeded from a stage 4 terminal setting.
Today, I am in my sixth year as a participant in the clinical trial Keynote 158. My unique experience has inspired me to create the Cholangiocarcinoma Foundation Australia, a Patient-Centric Research and Social Enterprise that utilizes next-generation patient-advocate strategies to prioritize patient empowerment and parity throughout the process.
I am forever grateful to the medical professionals who have played a crucial role in my journey from a stage 4 and terminal cholangiocarcinoma diagnosis to being NED (no evidence of disease) for six years and counting. I owe my life to Dr. Tom Snow, who made an amazing surgical save, Dr. Matthew Burge, who led me through two international clinical trials and recognized the biomarkers that qualified me for Keynote 158, and the medical team who administered the checkpoint inhibitor therapy Pembrolizumab (Keytruda), one of the most significant modern medical breakthroughs since penicillin. I also want to acknowledge the support of my wife Claire and the Gold Coast Ambulance team for their fast actions. Without all these people, including James Allison and Tusaku Honjo, who collaborated to make the checkpoint pathway possible and earned the Nobel Prize in 2018, I would not be here today to share my story of hope and resilience. As a side, there is nothing better than an academic with his feet on the ground and a personality to go with it, so take a look a Jim in full swing.
The first domino
My story highlights the importance of seemingly insignificant moments that can so quickly shape our lives in profound ways. One such moment came when Dr. Kwong, a member of Harald Puhala’s Whipple surgery team, took a personal interest in my passionate cycling stories (which was really a way for me to distract myself from the obvious) Kwong explained that was nothing more that could be done for me, however, he mentioned he had been doing some homework on this cancer and began outlining clinical trial he had found, it was being led by Dr. Matthew Burge out of the Royal Brisbane and Women’s Hospital. He also added that it was highly speculative and would probably not work, but worth a try.
Without hesitation, we said yes, and Dr. Kwong got on the phone to organize it. If he had not gone out of his way and mentioned this trial, and we did not immediately say yes, then I would never have met Dr. Matthew Burge.
Also, another profound moment occurred during our first consultation, Dr. Burge emphasized the importance of engaging an oncologist who had not only heard of this cancer but also had current expertise and experience with it, as it would probably define my survival outcome. These words have become the foundation of my patient success and drive me to empower others facing a similar diagnosis.
The Checkpoint Pathway
The “Checkpoint Pathway” discovery has opened up new treatment pathways.
My dynamic Complete and Full Response became the second time a Cholangiocarcinoma patient had completely recovered from a metastatic terminal stage 4 setting, via Merck’s international clinical trial keynote 158
Without 2018 Nobel Prize-winning scientists James Allison and Tosiku Honjo along with a very proactive and informed Oncologist Dr Matthew Burge, I would certainly not be here to share my story of survival.
Here is a great Ted talk, let’s just say it captures Jim Allison at his best
CCF Australia | CCA Patient Toolkit | The Cancer Toolkit
Your Fiction – My Reality
Sometimes great achievements can only come at the expense of other people’s realities. I have found that being a little naive and unrealistic has helped me see beyond the limitations of their realities. ~ Steve
Living life is most definitely in the eyes of its beholder, but it sure feels really really good, when we are all on the same song sheet, and fully in sync with the opportunity we have.