MEDICAL FACT SHEET: Diagnosis-NED
LOCATION: Gold Coast Australia
YEAR DIAGNOSED: 2016
DIAGNOSIS: Extrahepatic – Stage 2
SURGERY 2016: Whipple
SURGERY 2017: Hepatic Aneurysm- See here
MOLECULAR PROFILING: YES – Keynote trial 158
MUTATIONS: Not disclosed – Trial Parent – Merck
TREATMENT: GEM/CIS – Hamburg trial
TERMINAL 2017: Metastatic Stage 4
TREATMENT: Keytruda Keynote 158
QUESTIONS THAT DEFINE
Describe how your journey began
My journey began while cycling on a Saturday morning, when a sudden fatigue set in, and I struggled for the energy to get home and onto the couch and to rest. The fatigue continued to worsen and after a 5 days my stools turned a pale clay colour with a yellowing of the eyes and skin setting in. This was followed by severe persistent itching over my entire body.
What Medical Advice did you seek ?
My Wife Claire went to Dr Google and then immediately phone my Doctor, which led to failed blood tests, Ultrasound and CAT Scans within the first few days. My Doctor arranged for a surgeon to immediately perform an Endoscopy to stent the bile duct blockage and reduce itching (Bilirubin Levels) At this stage the Doctor thought it was Gallstones, but also wanted a biopsy of the blockage
How did you receive / deal with your diagnosis
The Surgeon that performed the endoscopy was not available to share the result of the biopsy, so we had to choose another surgeon to meet and discuss the results with. All I had been told was I had a stricture and blockage that should be removed, and no mention of cancer. At this meeting I was told I had “Stage 2 Extrahepatic Cholangiocarcinoma.
How did you make Decisions
Claire my wife stepped in and led the way – absolutely amazing calm and decisive, never overbearing always considerate and allowing me the freedom to be me and make my own decisions. Personally we are a team, always have been so thats how we approach the avalanche of information and overwhelm that seemed to come from nowhere.
Any unusual or interesting facts?
My younger brother Graeme had the exact same diagnosis in 2012. Graeme battled for just over 18 months RIP 3rd May 2014.
OH YES on a lighter note – but in reflection only – as “True as a Roo’s Tale” CLICK HERE
Mid 2016, little did I know that I was fast approaching the climb of my life.
HOW WOULD YOU DESCRIBE YOUR JOURNEY
An extract from my diary entry in 2017 says it all.
A MESSAGE TO CHOLANGIO THE BEAST
It all happened in the briefest of moments, Cholangio 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 breath.
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 centre. 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 calmed, and from that edge I could see so much more than I had ever seen before.
Your intentions were clear and brutal as you skilfully culled me from the herd, but you unknowingly reactivated and freed my inner drive and vision deep within my centre – I could suddenly see once again, a “Looking Glass” moment beyond your ugly grip.
Cholangio I conceded to your unwanted grip, but as you rejoiced in your victory you loosened your grip for just a moment, and a moment was all I needed, I was ready and re-engaged, slipping your grip and my imminent end.
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 learn’t 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 as parallel.
Another extract from my diary…
A PATIENT GRADUATION SPEECH LIKE NO OTHER
My Oncologist Dr Matthew Burge’s words to me when I agreed to voluntarily remove myself after 15 months of Keytruda infusions.
“There are many that we help a little and some we help a lot, and then there is you.” Go out there and ride your bike and do something special – see you in 3 months”
IN THE REAR VISION MIRROR
24.5 HOURS OF SURGERIES & 2 CLINICAL TRIALS LATER
10.5 hours of Whipple surgery followed by an emergency 5 hr intervention (aneurysm) losing in excess of 50 % of my blood in 30 seconds and within seconds of death. All this in just one month seemed a bridge too far at the time.
What would I do different knowing what I know now?
Before committing to ANYTHING, I would get a biopsy and have a simple IHC test to establish an MSI- High and PD-L1 status. Although at the time I had never heard of any of this – I do now! I was MSi-high and PD-L1 positive which meant I could have avoided ALL those dangerous life threatening surgeries followed by Chemotherapies – that is what my rear vision mirror has revealed.
What I think I did well…
I retained an unconditional willingness to keep getting back up, despite the absence of proof. Making the next step no matter how small, became the obsession. Also I would have to underline that I stuck with the science and eliminated EVERYTHING that is or was proclaimed as healthy -that meant no health shop, shopping from me. When I sat in front of my trial nurse for my regular debriefs there was nothing to add – no supplements, probiotics, microbio booster or THC /CBD – absolutely zippo, I followed the expertise and the science exactly.
A net gain
I lost a lot in those treacherous swamps of Cholangio, but I also gained the friendships of many amazing people, people who taught me far more than I sort. They gifted me with knowledge and experiences that most will never know or realise. What I left behind seems so insignificant in reflection …hmmmm ….
BILE DUCT: 99%
PANCREAS: 33% (head removed)
LYMPH NODES: 2 removed
MAIN HEPATIC ARTERY: Terminated
HAMBURG TRIAL: Gem/Cis 6 months – Weekly (Complete failure)
KEYNOTE TRIAL 158: Keytruda – Merck – 5 years – Complete Response Scan 1 (9Weeks) Trial ongoing to 2022
TRICKS, TRAPS AND ADVICE
Allow yourself to be a little unrealistic often, to transcend the now, to let your mind go to a place where your aspirations can breath, play and bath in their own realities.
My Favourite sayings
- Happen on Life or Life will happen on you
- Rise and Rise again until lambs become lions
- We all have the choice to “Try or not to try” until our last breath.
- Well Meaning but wildly conflicting ambiguous advice, that really only serves to ease the awkwardness of the giver.
- Proof is a luxury – do not let the lack of it become your excuse for not taking that next step.
- Convenience can very often be a trojan horse gift – be wary of such gifts.
- Be Realistic – Realism is in the eyes on the beholder – make sure you live your realism.
ADVICE TO MY CHILDREN
In Sickness and Health for richer or poorer this has worked for me . . .
1. Pursue Perfection!
Pursuing Perfection unhooks you from the traps of a crowded centre. It unlocks aspirations, and allows you to reach into the unchartered unproven potentials at your edge. It is uncomfortable and confronting, but will reveal what others cannot see and allow you to transcend the traps of a crowed centre. This has taken the human race from caveman to spaceman – what could it do for you?
2. Be Remarkable Be Resourceful – Be an Asset
Be a little unrealistic often, to transcend the now, to let your mind go to a place where your aspirations can breath and bath in their own realities and create new plans. Find that one thing that you can be remarkable and resourceful at, an asset, that adds value to those around you and beyond.
3. Learn, Try, Contribute
Learn Learn Learn – Try Try Try – Contribute Contribute Contribute, banish the word retirement and live life as an opportunity until your last breath. That is how you pass it on to to those who follow.
Why do all this?
For my brother Graeme Holmes (30th March 1962 – 3rd May 2014)
Graeme you battled blindly, you had no knowledge of the beast you fought – you had no Warrior support as I have had. You had no chance to make it out of the treacherous swamps of Cholangio and back to safety of solid ground, yet you shone a torch high for me. Graeme I am so so sorry that I did not fully understand what you were going through – How can I thank you other than by my actions.
We do this for Graeme’s wife Shirley, and their two Children Melita and Cody who must continue on without their Dad.
We do this for all those amazing Warriors that we have met and battled alongside, who have unselfishly enriched our life, yet still battle on within the swamps of Cholangio. Claire and I stand ready with our arms stretched out to pull you back up to the safety of solid ground.
Rise and rise again my fellow warriors until lambs become lions.
Steve & Claire