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.
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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 you must first believe it is possible when everyone else knows it is not.
You have to look through the impossible to where it could be, then take that next step and the one beyond that until momentum engages, lifting you up and above the pain of the now, transporting you to that place where dreams can breathe.
A place where your dreams, visions, and aspirations are free to rise up to their reality and make plans for their outward appearance.
All that was required was for me to get out of my own way and let it happen ~ Steve
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.
Stage 4 to *NED
*NED – No Evidence of Disease
Cholangiocarcinoma is also known as ‘Bile Duct Cancer”
Cholangiocarcinoma is an aggressive and rare cancer that originates from within the bile ducts of the Liver. The outlook for this diagnosis is very dismal with less than 8% surviving 5 years, and if metastatic stage 4 as I was, then that reduces to less than 1%
It had been less than 6 months since being diagnosed and I was now confronting the grim outlook of just weeks if not days to live when a Hail Mary Pass came in from Dr. Matthew Burge in the form of a highly speculative international clinical trial.
I could barely muster the strength to hold a pen and sign the clinical trial documents. Pembrolizumab commonly known as Keytruda 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 3 days after my first infusion. Three days is my unofficial version, as my complete and full NED response was not officially confirmed for another 9 weeks via CT Scans. The turnaround result was very evident as I literally went from bedridden to running on that third day, although I must clarify that running was more of an aspiration that rose up as I felt an amazing freedom being able to walk a few metres outside in the warm sun. Yip, I got ahead of myself and tried to stride out to see if I could muster a small celebratory run, hmmm it was then that I discovered I could not lift my legs to run. Let’s just say I was very fortunate to have not tumbled and broken something. Claire was horrified, and in reflection, I cannot blame her. See “Diagnosis & Timelines” below (NED = No Evidence of Disease)
CCA Patient Toolkit | The Cancer Toolkit | Flamingos & Me
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.