Thank you to Dr. Cathy Hughes, Dr. Keong, Dr. Tom Snow, Dr. Matthew Burge, Merck, and the 2018 co-Nobel prize winners Dr. Jim Allison & Tasuku Honjo. This is our family that you saved.

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 overcome a Terminal Stage 4 diagnosis, via Merck’s International Clinical Trials with Checkpoint inhibitors.

Without 2018 Nobel Prize-winning scientists James Allison and Tosiku Honko 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 Cholangiocarcinoma to NED

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)

Details

Click here to view CCA Australia
Patient Perspective Interview

Original Diagnosis (by Surgeon)
  • Extrahepatic (Distal) Cholangiocarcinoma
  • Terminal – 6 months without intervention
  • Potential surgery candidate
Timeline 2016 to present
  • 2016 October: Diagnosed Extrahepatic – ‘Distal’ – Terminal < 6 months (without surgery)
  • 2016 November: Curative Surgery (Whipple) became an option
  • 2016 December: Whipple Surgery – Successful with clear negative margins, but surgeons expected recurrence and underlined that I might survive another 18 months. They also emphasised that chemo and radiation were not an option to prevent cholangiocarcinoma and as such could do no more for me. But I had a cycling moment – a connection with the number 2 surgeon (Dr. Keong), he had done some private research and discovered a trial he thought I could qualify for – he was really just throwing me a bone to ease his bad news.
  • 2017 February: Valentines Day: Clinical trial via Royal Brisbane -‘Attica’
  • 2017 July: Metastatic Stage 4: liver/diaphragm and both Lungs
  • 2017 August to present: Clinical Trial: Merck’s Phase 2, Keynote 158 via Royal Brisbane (1 of 9 CCA patients participants globally)
  • 2017 October: Full & Complete Response. NED – I became Merck’s 2nd ever CCA patient to achieve this – as 0f 2021 there are now 3 of us globally.
Surgery (s) – Total 25 hrs

2016 December: Whipple Surgery removed

  • Bile Duct (95%),
  • Gallbladder (100%),
  • Stomach (80%),
  • Pancreas (33%)
  • Duodenum (100%),
  • Lymph Nodes (2).
Surgical Complications

2017 January 5th
Aneurysm Event – Main Hepatic Artery – A complication of my earlier Whipple Operation, which plunged me into a sudden fight for life with only minutes if not seconds to spare.

  • 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 crew’s 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
Clinical Trials

To be clear, if not for the speed and skill of Claire and then Dr. Tom Snow (Interventional Radiology Surgeon) this chapter of my story would not have been written and the aneurysm would have been the end of my story.

2 Trials

Attica – (Hamburg)
2 years:6 months of Chemotherapy + 18 months of surveillance

  • Via RBWH (Brisbane)
  • Gem/Cis Chemotherapy Combination
  • Every Tuesday 5-6 hr delivery (every 3rd Tuesday rested)
  • CT Scan Schedule: 9-10 weekly
  • 12 hr days Include Bloods, Chemo, and Transport

Experience + Results

  • Unfortunately, my experience was very debilitating for 6 days out of every 7
  • I lost approx 20 kilograms and found eating very difficult (Only able to eat sweet foods/shakes etc)
  • 5.5 months I quickly became metastatic Stage 4 Mets liver and lungs and was removed from the trial.

Keynote 158 – Merck, California, USA
5 years: 2017 to 2022: 2 years Keytruda infusions + 3 years of surveillance

  • Via RBWH (Brisbane)
  • Immunotherapy: Immune Checkpoint Inhibitor:
  • Trademark name – Keytruda, Clinical name is Pembrolizumab (pronounced pem-bro-lee-zoo-mab)
  • Infusions 3 Weekly (Tues) Dosage/200ml over 30 mins
  • Hospital and traveling time including blood 4-5 hrs (Much simpler)
  • Ct Scans schedule: yr1 x 9 weekly, yr2 x 12 weekly, yr3 x 12 weekly, yr 4 x 6 monthly – ongoing

Experience + Results

  • Large response at day 3 – all the debilitating pain that inhibited breathing and movement ceased.
  • Day 4 to 19 – I quickly declined and became ill; Deep itchy chest cough, severe cold night sweats (all night), sudden temperature spikes, extreme weakness and light-headedness, breathing was difficult and I was unable to function, I became totally bed-bound and in real trouble. I came very close to conceding to my last breath.
  • Day 20 – miraculous recovery – sitting up and later that same day walking – amazing dynamic turnaround
  • Day 21 – Made the trip to Brisbane for the second infusion. All went well
  • 10 weeks – 10th Oct 2017 – 3 infusions completed, First Trial Scan:
  • Pre-trial scan metastatic activity showed (1) Lungs: too many to count. Top of the Liver and under ribs: Multiple large and invasive tumors.
  • Scan 1 Result – all metastatic tumor activity was gone. NED – To describe that moment when the scans rolled up on Matt’s screen, well lets just say we were all speechless and a long silence and pause followed, this was not expected, as our best-case scenario was some evidence of shrinkage and perhaps 9-months on the very optimistic side I could be cancer free! At this point, no other CCA Patient had succeeded. I later learned that ‘Rose’ a patient on the earlier Keynote 029 trial (4 CCA patient participants) had also recorded a full and complete response over a 2-year trial period, so I became the second patient success.
  • Continued another 12 months of infusions
  • Continued to 3 monthly scans
  • Remain ongoing complete & full response (NED)
  • Currently 6 monthly
  • Complications: yr3 emergence of 4 thyroid lesions – scans in line with the above regime
    18 month – Fine needle – benign – 12 monthly scans as of May 2021
About the Checkpoint Pathway

Including CTLA-4  & PD1 checkpoints.
Speakers: James Allison, Ph.D., (MD Anderson), Gordon J. Freeman, Ph.D., (Dana-Farber), and Philip J. Gotwals, Ph.D.) (Novartis)

Note my result was via Keytruda which blocks the PD1/PDL-1 pathway. (Checkpoint Pathway)
Also discusses Ipi/Nivo combo – Ipilimumab blocks the CTLA-4/B7 pathway

CCA – Cholangiocarcinoma

If you are a newly diagnosed patient your best starting point is the CCA Patient ToolKit

CCA Patient ToolKit
Best Cholangiocarcinoma Patient and Caregiver resources

Along with Pancreatic, Cholangiocarcinoma – (CCA) is the most hostile of all cancers, with no curative outcome or early detection advantage. Primarily a Cholangiocarcinoma (Bile Duct Cancer) is an adenocarcinoma that is a tumor growth that originates within the body’s 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 and this provides the cancer to move mostly undetected.

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

Highlighted in red is my specific diagnosis

  • 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
  • Overall average survival period is improving slowly but still sub 12 months.
Cholangio is 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 are 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 was completed with one patient success outcome, Phase two trial is ongoing (now in yr 5)
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, privately treated with Keytruda succeeded – NED ongoing.
  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 initiated: ie Keynote 158
  5. 2017 -18: ICI -Immune Checkpoint Inhibitors recognized success in treating Melanoma, Lymphoma, and Lung cancer patients. These 3 cancer cohorts qualify as first-line treatments

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

  • Bell’s Palsy
  • Anaphylactic Shock Event
  • Diverticulitis
  • Broken Neck C6 – Paralysed right side 9 months

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.
Children – Georgia (Vancouver) and  Zach (London)

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.

More Links

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 unrealistic has helped me see beyond the limitations of their realities. ~ Sagh

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