I cycled 400 km’s per week and often ran 30kms as well – I did this for years – I loved it –
Fit and healthy people just do not get cancer, do they! Wrong.
My Patient bio.
View my CCA Interview – the hard facts
A Cancer Diagnosis
December 2016 I was diagnosed with a terminal cancer called Cholangiocarcinoma (CCA) and given 6 months. In July 2017 I became Metastatic, and like metastatic Pancreatic Cancer, CCA is the most hostile of all cancers. The stats are dire –
- 1%, chance to survive 2yrs
- 6.7 months of average life expectancy.
- CCA begins within the livers bile ducts and connects most of our vital organs, hence the highest morbidity rate of all cancers.
In an effort to beat certain death, I undertook 25 hours of surgery, which included a Whipple – the biggest of all multi-organ operations.
Why would I try? because surgery was the only chance I had at survival, even though surgery success is slim, with under 5% surviving more than 5 yrs post-surgery. When it comes to cancer, surgery is the only curative option a patient has – full stop. Chemo and radiation can be effective management tools in some cancers but not when it comes to CCA or Pancreatic.
The operations removed …
- Stomach – 80%
- Bile duct – 100%
- Pancreas – 33%
- 2 Lymph Nodes
- Duodenum – 100%
- Hepatic Artery – 100%
Over the past 3 years, my survival has come down to mere seconds and minutes on several occasions.
- Immuno Trial: Globally 9 patients globally qualified for keynote trial 158
- Qualification: To qualify you have to be metastatic and death is imminent – I am the proverbial guinea pig until 2023
- Making Medical History: I was the only patient to succeed and as a result became the 2nd patient ever to overcome Cholangio from a metastatic setting, via the Immuno agent Keytruda. As of 2020, there are now 3 of us.
My younger brother Graeme (RIP) 2014 – had the same diagnosis. CCA is a non-hereditary, very aggressive and rare cancer – 2 brothers/siblings with the same diagnosis drew attention.
Shout out and share loudly those successes that will help others rise to their victory.
It has been a gigantic 3-year survival battle to overcome a metastatic stage 4 cancer that until recently has been undefeatable.
Learning to live with cancer as an asset
With Cancer, you cannot wander aimlessly for too long, you have to decide on something that gives you purpose from within, if you lie down it will take you, it’s that simple. I found writing everything out of my head was a critical step forward, it was a conduit for me to see myself and all that had happened. I gave me a sense of control and a way of seeing, discovering purpose and purpose gave me momentum and to me, momentum meant living.
You can never become un-cancered,
but you can move forward with the assets of what has been learned.
“Happen on Life or Life Will happen on you,” having said that, life still happened on me, and it did so in a bloody big way.
Up until 2017, I led a fit and healthy lifestyle, which centered around road cycling (my passion.) Typically I rode 300 – 500 km/week and participated in many events across NZ/AU.
I have gained a very unique and intimate knowledge within this environment. I decided to increase my relevance and contribution value to the “Cancer Cure Equation” by studying the science of immunology.
- CSIR NET: (Council of Scientific and Industrial Research) – I have attended 2 years of online lectures and panel discussions – I am not sitting the exam, just increasing my relevance and contribution value to those who need my help most – “The Newly Diagnosed patient”
- Primary focus: DNA – RNA – Proteins messaging and microsatellite instabilities, NGS Molecular Profiling, specifically Immune Check Point and Growth Factor Blockades.
- My area of focus is GI (Gastro-Intestinal) Adenocarcinoma Mutations,
- I contribute this knowledge back to “the Globally Connected Patient” – a collective patient and caregiver knowledge hub who gift forward their knowledge, experiences and wisdom to empower the “Newly Diagnosed Patient and Caregiver”
The Immuno breakthrough was thanks to Nobel Prize Winner Dr. Jim Allison’s CTLA-4 Checkpoint pathway breakthrough became the biggest medical event since the discovery of penicillin – the greatest breakthrough in modern medical history, and the first time the word cure and cancer has been used in the same sentence.
Nobel prize -Medicine-Allison
These are the people that saved my life and a family.
- Dr. Jim Allison (Texas USA),
- Dr. Matthew Burge (Brisbane Australia), and
- Dr. Tom Snow (Gold Coast Australia)
Lemons to Lemonade if you are open to this idea?
Becoming such a rare stat in the cancer world thrust me in a new direction where I have met and spent time with International Hollywood Actors and Televisions Personalities, US Senators Aids, along with the most influential science and cancer researchers in the world. Last year I was hosted, cycled with and pampered by Tour de France Cyclists over 1 week of the Tour Down Under. I have formed some very special and amazing friendships, that simply would never have happened if not for cancer. Pretty incredible (almost unreal) stuff for a small-town Kiwi kid. As for the lemonade, I am still working on my unique brand of lemonade, from the lemons I have been dealt.