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
It was July 2017 and I was confronting the grim outlook of just weeks, if not days, to live when Dr. Matthew Burge presented me with a highly speculative international clinical trial that could be my Hail Mary Pass.
There had been no previous survivors from a stage 4 and terminal CCA setting. In fact, my younger brother also had the exact same diagnosis and died two years prior to my diagnosis. It is extraordinarily rare that two brothers had the same non-hereditary cancer.
I could barely muster the strength to hold a pen and sign the clinical trial documents for pembrolizumab, commonly known as Keytruda. This drug 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 three days after my first infusion to go from bedridden to sitting and walking normally. Three days is my unofficial version, as my complete and full NED (No Evidence of Disease) response was not officially confirmed for another nine weeks via CT Scans.
I became the second-ever CCA patient to have ever succeeded from a stage 4 terminal setting.
Today, I am in my sixth year as a participant in the clinical trial Keynote 158. My unique experience has inspired me to create the Cholangiocarcinoma Foundation Australia, a Patient-Centric Research and Social Enterprise that utilizes next-generation patient-advocate strategies to prioritize patient empowerment and parity throughout the process.
In summary:
I am forever grateful to the medical professionals who have played a crucial role in my journey from a stage 4 and terminal cholangiocarcinoma diagnosis to being NED (no evidence of disease) for six years and counting. I owe my life to Dr. Tom Snow, who made an amazing surgical save, Dr. Matthew Burge, who led me through two international clinical trials and recognized the biomarkers that qualified me for Keynote 158, and the medical team who administered the checkpoint inhibitor therapy Pembrolizumab (Keytruda), one of the most significant modern medical breakthroughs since penicillin. I also want to acknowledge the support of my wife Claire and the Gold Coast Ambulance team for their fast actions. Without all these people, including James Allison and Tusaku Honjo, who collaborated to make the checkpoint pathway possible and earned the Nobel Prize in 2018, I would not be here today to share my story of hope and resilience. As a side, there is nothing better than an academic with his feet on the ground and a personality to go with it, so take a look a Jim in full swing.
The first domino
My story highlights the importance of seemingly insignificant moments that can so quickly shape our lives in profound ways. One such moment came when Dr. Kwong, a member of Harald Puhala’s Whipple surgery team, took a personal interest in my passionate cycling stories (which was really a way for me to distract myself from the obvious) Kwong explained that was nothing more that could be done for me, however, he mentioned he had been doing some homework on this cancer and began outlining clinical trial he had found, it was being led by Dr. Matthew Burge out of the Royal Brisbane and Women’s Hospital. He also added that it was highly speculative and would probably not work, but worth a try.
Without hesitation, we said yes, and Dr. Kwong got on the phone to organize it. If he had not gone out of his way and mentioned this trial, and we did not immediately say yes, then I would never have met Dr. Matthew Burge.
Also, another profound moment occurred during our first consultation, Dr. Burge emphasized the importance of engaging an oncologist who had not only heard of this cancer but also had current expertise and experience with it, as it would probably define my survival outcome. These words have become the foundation of my patient success and drive me to empower others facing a similar diagnosis.
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
