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.


Kind regards
Steve

A modern-day penicillin moment in medical history

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.

The “Checkpoint Pathway” discovery has opened up new molecular frontiers.

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.

Life happened on me, and it did so in a very big way.

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.

The Abyss came to me

My mind fell over its edge, spinning out of control. When I landed, the world I lived in had changed.

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.

I desperately wanted to find others who had succeeded.

I wanted to see how they had beaten it – I needed hope that it could be done.

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.

Life is always the opportunity

and the opportunity is born from the challenge of living that life.
Details and Inner thoughts

A little intro

I would describe myself as the classic modern day ‘Active Lifestyler’ which really means I am over 50 and clinging to my diminishing youth. Living on the Gold Coast is a pretty cool place to build a lifestyle which blends all the essential elelments of work and play. I am love cycling, running and a regular play in the swim in the ocean. I am generally up and in to it around 5am most days and of course the coffee.

My Family

Born: Waikanae NZ
Live: Main Beach Gold Coast Australia since 2005
Married: Claire January 1989 in Waikanae.
Daughter: Georgia (b: 1994) Educated Thomas Kennedy Junior Academy (NZ) + St Hilda’s (Gold Coast) + Bachelor of Business via QUT (Brisbane). Georgia works in a Clinical Management role for Babylon Health in Vancouver. Babylon is rolling out a new wave of AI health innovation aimed at healthcare services delivered by an “App” platform between Patient and Doctor.
Son: Zach (b: 1990) – Educated Thomas Kennedy Junior Academy (NZ) + TSS (Gold Coast) + Bachelor of Commerce via Bond University (Gold Coast) also Bentley University (Boston USA). Zach specialises in Business Turnarounds and Carve-Outs, which began with Deloitte Australia where he also qualified as a CA Accountant and held the position of Senior Manager in their “turnaround division” up until 2016. 2017 he made the leap into the European Venture Capital fund environment.

Chief Evangelist for Cholangiocarcinoma

To my younger brother Graeme RIP 2014
You and I share the exact same in so many ways as brothers do – we unfortunately shared the exact same diagnosis – you were first, then it was my turn. Graeme, you did not make it, the New Zealand health system so badly let you down. I owe my life to the open-minded Australian health system and the talent it fosters within.

Unenviable History
  • 2002: Bells Palsy – 4 months unable to speak properly – full dynamic recovery.

  • 2008: Collapsed with anaphylactic shock, needing emergency intervention (prawns were the trigger).

  • 2010: Diverticulitis – lower bowel – minor surgery to rectify.

  • 2012: Broken neck, a complete (through) break @ C6 paralysing me from head to hip down the right side for 9 months (full recovery at 12 months).

  • 2015: December – Emergency 5 hr surgery – Gallbladder ruptured, with complete disintegration.

  • 2016: November – Diagnosed with CCA – terminal – 6 months to live – no cure – no treatment options.

  • 2016: December 8th Surgery – ‘Whipple’

  • 2017:  January 5th – Emergency surgery – Whipple complication – aneurysm within Hepatic Artery – My life in the hands of Dr Tom Snow, interventional radiologist, who only had minutes to seconds to save my life.

  • 2017: July – CCA now fully Stage 4 Metastatic – Liver and Lungs – I had little time left, a few weeks at best.

  • 2017: October 10th – a remarkable outcome – NED (No Evidence of Disease). I became the 2nd ever CCA patient in the world to fully respond and overcome this cancer. Currently, via Merck’s Keytruda there are 3 of us – 2 x USA, 1 x Australia.

Chief Evangelist for Cholangiocarcinoma

CCA: Cholangiocarcinoma

  • Extrahepatic (Distal) Cholangiocarcinoma
  • Cancer of the Bile Ducts connecting the Liver Stomach and Pancreas
  • Terminal – 6 months

TOTAL SURGERY: 25 hrs

Whipple Surgery:
December 8th, 2016
Performed by 7 surgeons over 12 hours
The Whipple removed

  • Gallbladder
  • 2 Lymph Nodes
  • 80% Stomach
  • 100% Duodenum
  • 95% Bile Duct
  • 33% Pancreas

Aneurysm:
2017 January 5th
Aneurysm Event – Main Hepatic Artery – My life was now being measured in minutes if not seconds.

  • One month post-Whipple Op. At home beginning my recovery, I took a sudden turn passing out and began vomiting up large volumes of blood
  • Ambulance response kept me alive to reach GCUH Emergency
  • Interventional Radiology Surgeon Tom Snow & a large team  of experts performed a 5-hour Op
  • Found the hole in the artery and restricted bleed out
  • 100 % Termination (removal) of the hepatic artery
  • This artery supplies approx. 30% of the blood to the liver
  • This event was a direct complication of my ‘Whipple’ Operation
  • If not for Claire’s cool head and decisive actions I would not have survived until the ambulance crews arrival
  • Luck also played a factor, as  Dr. Tom Snow was leaving the hospital car park at the time & was called back just in time
TREATMENTS: 2 Trials – 22 months

Trial One: Hamburg, Germany
Chemotherapy

  • Via RBWH
  • 6 months weekly Infusions Gem/Cis

Trial Two: Merck, California, USA
Immunotherapy

  • Keynote trial 158
  • 5 years to 2023
  • Keytruda/200ml Infusions (3 Weekly)
  • Ceased infusions @ 15 months (voluntarily)
  • Ct Scan – monthly, 3 yrs
  • Plus ultrasound for the emergence of thyroid lesions
  • Infusions & blood draws – I have lost count on how many – all my veins have long since collapsed
CCA – Cholangiocarcinoma

Further information
CCA Australia & NZ or Cholangio Foundation

Along with Pancreatic, Cholangiocarcinoma – CCA is the most hostile of all cancers, with no curative outcome or early detection advantage.
An adenocarcinoma is a tumor growth that originates within the bodies epithelial tissue (skin) layer around all our organs. This skin layer has a mucus-secreting layer of glands that line and protect our vital organs.

CCA invades many connected organs via the bile ducts, it does so completely undetected with stealth and speed, and typically goes undetected until a stage 4 outcome. Impacted organs –

  • Liver
  • Gallbladder
  • Stomach
  • Pancreas
  • Duodenum
  • Lungs
  • Lymph Nodes
  • Also the Spine and Brain can be impacted

Survival – Outlook

  • 5 yr Survival = less than 8 %
  • 5 yr Metastatic Survival = less than 1%
  • Average survival period: Extrahepatic = 6.7 months
  • Average survival period: Intrahepatic = 13.2 months
  • Average survival period: All = Approx. 7 months (this stat is improving)

Cholangio an undefeated Cancer Beast

Currently Merck leads the charge to defeat this beast, and also thankfully other drug companies are fast becoming more relevant in dealing with the many mutation variants that occur in cancer.

The race to conquer cancer
Cancer treatments now about highly targeted and specific treatment of your specific cancer mutation. Most cancers have subsets defined by their mutation. ie bowel cancer patients can no longer just be identified as ‘Bowel” they must also be identified by which mutation type is driving the cells to become cancerous – it’s these mutations that immunotherapy intervenes in.

Phase one trial complete with one success, and now a Phase two trial is almost complete.
I am in the Phase two trial – one of 9 – I was the only full response. Below I have also included two other outliers – Matt and Melinda.

  1. 2015: Phase One Trial – Keynote trial 028. This trial produced the first-ever full NED patient response – Rose -USA – in her 70’s.
  2. 2015: Matt Reidy, off trial and privately treated also succeeded becoming NED.
  3. 2016: Melinda Bacchinni who had limited success on TIL regimes, switched to Keytruda and had immediate success becoming NED.
  4. 2017: Phase Two trial: Keynote 158
  5. Immune Checkpoint inhibitor (ICI) made the CCA  breakthrough. ICI was first successful with Melanoma, then Lymphoma, and now Lung cancer patients. These 3 cancer cohorts are now qualifying to use ICI treatments in the first line setting (ie. bypassing surgery and chemotherapy)

Success is not guaranteed, but the word cure and cancer are now being referred to in the same sentence as immunotherapy.
We, 4 patients, have now joined the 1% of the 1% across all cancer cohorts.

My current projects
Contact Details


Chief Evangelist for Cholangiocarcinoma

There is no manual for dealing with this type of overwhelm. I had to find a way to lighten the load, and writing everything out of my head, felt like the right thing to do. What unfolded over time, was that I had unwittingly created an alternate world – something fresh out of “Alice” or the Wizard of Oz” – a place where my inner most dreams and possibilities could become my realities, free from the overbearing burdens of other people’s logic and realities that had me buried before I was dead.

My story here has evolved from “My Walk with Cholangio the Beast” to the “Chapters of Me” which became the spaces I created to reassemble my thoughts – they are bare and raw. It is my intent to evolve them over time, and I am equally sure, they will evolve me forward as I learn from them – they represent what has happened and give me a foundation to rebuild.

Sharing my thoughts and thinking.

I gained greatly from reading the efforts of others battling life-threatening cancers, but it is very rare to find a success story in Cholangiocarcinoma. I feel a responsibility to share my experiences – to help others facing what seems like an unwinnable challenge.

Anything and Everything is possible, so long as I remain open to it.
An Unconditional Willingness lights up my mind so that opportunity and luck can find me in the dark.

Rise and Rise again until lambs become lions – (A line from a movie)

Momentum is life, without momentum there is nothing –
My experience has been that momentum begins deep, deep within the mind and it leads the body to express its reality.

Take that next step and the one beyond that –
Steve get up, get up, get up, take that next step and the one beyond that, until momentum reaches out and engages, lifting me up and beyond the now. Transporting me to that place where my dreams and visions and bath and play in their own realities, free from the consent and logic of others.

My reality is my reality until my last breath
My Reality is my reality, and yours is yours, this became a critical understanding it gave me resilience, but in reality, I became so busy building my own reality, which left little space for others  – including uninvited fears.

When the music stops, sometimes you just have to make your own

Music enhances and expands the mind beyond its conscious measures –
This is the Music that allowed me to enter another world – my world of “Alice” and “Oz.” It provided passage to transcend the pain of the now, to Walk on Water, and turn fiction into fact. Link to my Channel

Chapters of Me was created as an instinctive effort to free up my overwhelmed mind. I needed to find some type of footing and control. Chapters of Me remains a place to store my thoughts –  Click here to View

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.

Letting it all out like a tweety bird in spring