Steve Holmes
Cholangiocarcinoma Survivor
MyStory
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.
ThankYou
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My Family
Claire, Georgia, Zach, and Myself
My Diagnosis
- Cholangiocarcinoma (CCA)
- Stage 4 Extrahepatic (Distal)
- Metastatic/terminal
- 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, I had to believe it was possible, despite everyone knowing it was not.
I had to look through the impossible to where it could be and take that first step, and the one beyond that, until momentum reached out and embraced me, lifting me up and above the pain of the now, transporting me to a place where my dreams could breathe and their visions and aspirations were free to rise up and bathe in their own realities and make plans for their outward appearance.
This is how we made it to the moon, and how we do remarkable things today that just yesterday were impossible.
Your reality is yours and mine is mine, therein lies a distinction that saved my life.
All that was required was for me to get out of my own way and let it happen ~ Steve
Stage 4 to NED in 3 days
25 Hours of Multi-organ Surgeries + 2 international clinical trials
In July 2017, I found myself facing an unthinkable reality: a stage 4 terminal cholangiocarcinoma (CCA) diagnosis with just weeks, if not days, left to live. My younger brother had succumbed to the same non-hereditary cancer two years prior, leaving me to navigate uncharted territory.
It was then that Dr. Matthew Burge presented me with an opportunity to participate in an international clinical trial for pembrolizumab (Keytruda), a highly speculative chance that became my lifeline.
Despite being barely able to hold a pen, I managed to sign the documents for the trial. Astonishingly, I responded to the treatment within just three days of my first infusion. Over the course of nine weeks, this response was officially confirmed as a complete and full NED (No Evidence of Disease). During this time, I went from being mostly bedridden, almost unable to sit up, to walking normally. In doing so, I became the second-ever known CCA patient to succeed from a stage 4 terminal setting.
Today, I am in my sixth year as a participant in the Keynote 158 clinical trial. This unexpected and miraculous journey has inspired me to create the Cholangiocarcinoma Foundation Australia, and separately Cholangiocarcinoma Foundation New Zealand focusing on patient empowerment and parity through next-generation patient-advocate strategies.
A Grateful Acknowledgment:
I owe my life to the medical professionals who turned the seemingly impossible into reality. Dr. Tom Snow’s surgical skill, Dr. Matthew Burge’s leadership through two international clinical trials, the medical team administering Pembrolizumab, and the support of my wife Claire and the Gold Coast Ambulance team were instrumental. James Allison and Tusaku Honjo’s collaboration on the checkpoint pathway, earning a Nobel Prize in 2018, laid the foundation for this breakthrough. Their combined efforts have allowed me to share my story of hope and resilience.
Seemingly Insignificant Moments:
My journey underscores the power of seemingly small moments that shape our lives. Dr. Kwong’s personal interest in my cycling stories led to his extra effort in discovering a potential clinical trial led by Dr. Matthew Burge. Kwong’s willingness to go the extra mile and our immediate decision to say yes to the clinical trial opportunity set the first domino in motion. Dr. Burge’s emphasis to me that engaging an oncologist that not only knows of the diagnosis but has current expertise and experience with that specific cancer diagnosis became the foundation of my success. These profound moments drive my mission to empower others facing similar diagnoses.
In Summary:
I am here today, grateful for the dedicated life-saving interventions, the medical breakthroughs, and the unwavering support of those around me. My success story, as unlikely as it may have seemed, provides a testament to a saying I carved out of difficult lived experiences: “My reality is mine, and your reality is yours.” It’s a simple yet profound realization that allowed me to dare to look beyond the impossible to new possibilities and then set about making them real. You simply cannot achieve this if you carry the weight of other people’s realities. As awkward and unsettling as this was, I had to release myself from that burden. This insight was the source of my personal resilience and, I hope, a beacon of hope for others. It’s an example of what is possible.
As my first clinical trial nurse so wisely said; “Steve, I know that cancer has taken so much from you, but it can also give back so much more if you let it!” – IF YOU LET IT! These words resonated with me, and with this realization, I set about getting out of my own way. I allowed my innate willingness and potential to rise up and lead me forward.
My pictorial journey
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.
Here is a great Ted talk, let’s just say it captures Jim Allison at his best
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).
- Main Hepatic Artery (100%)
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 of Keytruda infusions + 3 years of surveillance
Clinical trial Keynote 158
- 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 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
It is important to understand when reading this section, that patient outcomes are exceeding patient statistics. Many who embrace both cancer and patient literacy are performing better than what these stats elude to.
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.
- 2015: Phase One Trial – Keynote trial 028. This trial produced the first-ever full NED patient response – Rose -USA – in her 70’s.
- 2015: Matt Reidy, off-trial, privately treated with Keytruda succeeded – NED ongoing.
- 2016: Melinda Bacchinni who had limited success on TIL regimes, switched to Keytruda and had immediate success becoming NED.
- 2017: Phase Two trial initiated: ie Keynote 158
- 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.
I want to ensure that life lives on within us and as such I will also share this;
During a cricket training session, my father Dennis at just 52 years old suffered a massive heart attack and passed away on the cricket pitch in front of my brother Graeme and me. Graeme and I were in the nets hitting practice shots and Dad was fielding and returning the balls back to the bowlers. At the time, I was 29 years old, newly married to Claire, and expecting our first child. Graeme was 27 years old and Dennis was 52.
Links
CCF Australia | CCA Patient Toolkit | The Cancer Toolkit
Private 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 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.
Letting it all out like a tweety bird in spring
