Thank you to Dr. Keong, Dr. Tom Snow, Dr. Matthew Burge, Merck, and the 2018 Nobel prize winner Dr. Jim Allison. This is our family that you saved.

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 dynamic Complete and Full Response became the second time a Cholangiocarcinoma Patient had ever overcame a Stage 4 metastatic setting, via Merck’s International Keynote trial 158.

My CCA Patient Interview

Life is my biggest opportunity

Personal experiences have taught me that the opportunity and rewards within life, only emerge when I fully accept and embrace the challenges that come with this. The enormity of a terminal cancer diagnosis completely overpowers this reality – yet it remains a reality, that we each must find a way back to.

Family and Details

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% (Me)
  • Average survival period: Extrahepatic = 6.7 months (Me)
  • Average survival period: Intrahepatic = 13.2 months
  • Overall Average survival period is improving slowly but still sub 12 months.

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

A Small disclaimer

I write for myself, to empty out and lighten the load. It gives me vision, purpose, direction, and momentum. Writing allows me to talk to myself, to accept, reset, and find my willingness – a way forward.

Writing loosens the grip of fear, it gives me a sense of control and the opportunity to see what I could not see before.
We all have our part to play in life and this page has become part of mine.

The mind leads everything.

That’s how humans defied gravity and Dr Jim Allison opened up the reality of the “Checkpoint Pathway”

Our Mind is our center, the sum of our Brain, Body, and Environment, and our innate ‘Willingness’ is the nucleus of our mind.
As with most people, I learned that life does not run in a straight line nor play fair. Over time I developed stories and one-liners to cope and navigate the unexpected.

These 5 have been my constants
  1.  “Anything and Everything is possible, while you remain open to its reality. It’s your “Willingness Beacon” so that Opportunity and Luck can always find their way to you” – Sagh –
  2. Be a little unrealistic often, it feeds the dreams, builds vision, purpose, and momentum, when there appears none.
  3. Raw Unquestioned Willingness: We all have this at our center, it’s our minds DNA – who we are, and the stuff of magic – let it rise up. Willingness allows fiction to find its fact – to become its own reality. It’s how I appeared to walk on water and defy the comfortable logic of the masses. It powered my next step and the one beyond that, until momentum, reaches out and engages, lifting me up and beyond the now … Willingness creates its own pathway and builds bridges across the stale realities of the masses.
  4. My reality is my reality and your reality is yours
    This understanding has been such a significant distinction in my life, it has allowed what potentials lay within me, to rise up without suppression, and find their own reality – I just had to allow this to happen.
  5. The Pursuit of Perfection creates momentum, flushes out potentials, keeping self-honesty front and centre, and my direction relevant. The “pursuit” is the primary elixir, and “perfection” belongs within the eyes of its beholder.
Consider this point of view

Life is the opportunity, but only if you fully embrace its challenge. Without fully embracing the challenge, there is no life, no opportunity, no nothing. You cannot prepare or plan for the unplanned, you can only trust in who you are and the willingness you possess within. How you think upon the uninvited thoughts is everything to the outcome.

Snippets of my journey

Life Happened on me and it did so in a 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.

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

Thoughts were relentlessly avalanching through my mind, I was stuck in a cancer vortex, and I could not keep my balance, or breathe normally.

Somehow instinctively within my mind, I crouched down to a stable centre of gravity, and then I slowly began to stand. Throughout this, I was actually sitting in the Doctors consultation chair. I remember thinking I have to take that next step, no matter how small or insignificant. Looking back, that gave me some clear air, to look up and around me. The first thing I saw, was Claire looking back at me, tears in her eyes, Claire had just gone through that same vortex.

And so it begins

What lay ahead is simply not digestible to the unprepared mind, there is no manual for this type of event, but focusing on that next step saved me from defeat, it implanted a small sliver of self-control.

Surgery became my first opportunity.

  • I was offered n accepted a Whipple Operation which took 7 surgeons over 12 hours.
  • All up I have now endured 25 hours of life-threatening surgeries, followed by –
  • 22 months of highly intensive chemotherapy and immunotherapy treatments.

This has been an all-engulfing physical, mental, and spiritual challenge, way beyond my comprehension. My vision and my future had been ripped right out of my centre, leaving me numb, and petrified. Self-talk, and coaxing became my very raw and crude method – “Steve – get up, get up, get up – take that next step, and the one beyond that until momentum reaches out and engages me. Momentum is life – keep moving even if it is only within my mind”  – Looking back these words were actually real momentum, they gave me the beginning I needed to make. Essentially this was the beginning of my response to Cancers attack on me.

I wanted to see how others 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.

It all happened in the briefest of moments.

“You busted through my front door in the dark of night, you wrestled me to the ground, repeatedly raping me to within seconds of my last breath, ‘Cholangio’ you left me for dead, cold and beaten, but I did not die, I still breathe.

Cholangio you took so much from me, yet you left something behind.

As I struggled for my survival I found something deep within me that you could not see nor reach, my “Unconditional Willingness” was still intact protected within my center. You and your cancer army could not reach what you could not see.

Cholangio you pushed me to my edge but I did not go over. As I clung there with just a finger hold left on life, my mind unexpectedly calmed. From my edge I could see so much more than I had ever seen before.

Your intentions were clear and brutal, as you skillfully culled me from the herd, but unwittingly you reactivated my instincts, and freed my inner vision trapped deep within – I could see again, my “Looking Glass” had returned and could see beyond your grip.

Cholangio I conceded to your unwanted grip, and as you rejoiced in your victory, you loosened your grip for just a moment, but a moment was all I needed, I re-engage and slipped your grip and the awaiting noose.

Cholangio I took that next step at speed without hesitation or condition. I continue to move forward with my Willingness’ and ‘Looking Glass’ in hand. I am not limited or daunted by the convenience of proof. Yes, I have learned that proof is born from within the Looking Glass. I know the dangers of an idle and convenient proof that can so easily disarm the pursuit of perfection.

Cholangio I am aware of your stealth, your shadow, and your grip. I know you and you know me. I know your path, you know mine, I will always see your path, so that our paths remain parallel.

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 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 – I find that acceptance of my current situation helps my mind reset, settle and find away forward – it unlocks me, and allows my willingness to rise up.

Willingness is the stuff of magic and dreams, its a expression of who I am. I think Unconditional Willingness can succeeded over the inert realities of others, it defies logic and transforms fiction to fact.

Writing it all out – I have evolved a habit to empty it all out onto paper, I find that it lightens the load and free’s up my mind. It’s another type of tangible reset that helps me see things for what they are, and allows me to write myself into a better story. Writing gives shape and reality, it gives control and hope.

Fear remained ever-present as I faced a fast-approaching demise, you cannot fully escape or get around this. Distraction and Discipline were my best weapons. My best distraction was writing and dreaming about what I wrote. I learned to be very disciplined in identifying trojan horse gifts.

There were many Trojan Horses
My biggest challenge came from the constant flow of well-intentioned and misguided advice, which triggered avalanches of fear and overwhelm. I became very deliberate on what and who I let in which reduced those horrid rampant fear attacks. Knowing this also gave me a heightened sense of control.

Evolving with and into the opportunity

I am trying hard to grow forward from my experiences in a way that helps others today.

Many do not want to be defined by their circumstances, but they will always be shaped by them. It all boils down to this – “It’s not how much we know that counts, it’s what we do with what we know that defines our outcomes

Targeted Knowledge

Molecular / Genomic profile

Matt (Dr. Matthew Burge) suggested I read the book called “The Gene.” Matt said it would be difficult, and it was at first, but then it all began to fall into place due to my experiences within the world of immunotherapy. The bottom line of what I learned, was that Mutations really do Matter, I am proof of this. Mutations are simply mistakes that occur in our DNA replication. If you are reading this as a fellow patient, ensure that your medical team has an IHC test and or a Molecular Profile completed on your biopsy. Please do not assume that they will automatically or willingly have this done on your behalf – that what be a mistake.

I needed this, immediately post-diagnosis, amazingly it did not exist, so I created it.

The Cancer Toolkit is the collective knowledge, experience, and wisdom from the globally connected patient. A peer to peer, patient to patient digital toolkit series for the newly diagnosed patient and their support community. A simplified checklist of “Must Do’s” that will give them a vital head-start to better outcomes.

The Cancer Tool Kit

I will leave you with this –

I feel a strong sense of responsibility to return to the edge of that cancer abyss, I need to stand firm and help pull my fellow warriors back up to the safety of solid ground. I have been both very unlucky and very lucky – I have learned from both, it should be shared.

One last thing that can define your outcome –

You have to pull yourself up first, you have to help others to help you. This will lift them to exceed their best. You have to open up and engage, it will lift you it will lift them – it lifted me.

All the best
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.

Letting it all out like a tweety bird in spring