A PATIENT PERSPECTIVE

CHOLANGIOCARCINOMA AUSTRALASIA

Steve Holmes

Cholangiocarcinoma, a terminal diagnosis, that led to significant surgeries, treatments that failed, and then to a modern-day medical breakthrough in cancer outcomes.

Facts

Important starting point
CCA Introduction Pack
Website resources
Patient and Caregiver groups
My current projects

CCA: Cholangiocarcinoma

  • Extrahepatic (Distal) Cholangiocarcinoma
  • Terminal – 6 months without intervention
  • Potential surgery candidate

TOTAL SURGERY: 25 hrs

Whipple Surgery:
December 8th, 2016
Performed by 7 surgeons over 12 hours
Removed

  • Gallbladder
  • 2 Lymph Nodes
  • 80% Stomach
  • 100% Duodenum
  • 95% Bile Duct
  • 33% Pancreas

Aneurysm:
2017 January 5th
Major Aneurysm Event to the Main Hepatic Artery – My life was now being measured in minutes to seconds. Click here to view images taken just 30 mins before I fell unconscious, and the ambulances called.

Details

  • One month post-Whipple Op. while recovering at home, I suddenly passed out and began vomiting up large volumes of blood
  • Ambulance response was fortunately very swift.
  • Interventional Radiology Surgeon Tom Snow & a large medical team were ready for my arrival and performed a 5-hour Op.
  • End result – Termination of the hepatic artery
  • This artery supplies approx. 30% of the oxygenated 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 crews arrival
  • The Luck factor:  Dr. Tom Snow was in the car park about to leave, and was called back just in time.
  • Biopsy: Yes (from surgery)
  • IHC finding: Absent MLH1 /PMS2 = dMMR | MSi-high + PD-L1 Positive – Keytruda match
  • Molecular Profiling: Yes
  • Lynch Syndrome: Negative
  • Mutations: Trial Parent – Merck retains these confidential to the trial conditions.

TREATMENTS: 2 Trials – 22 months

Trial One: Hamburg, Germany
Chemotherapy

  • Via RBWH
  • 6 months weekly Infusions Gem/Cis

Trial Two: Merck, California, USA
Immunotherapy

  • Keynote trial 158
  • 5 years to 2023
  • Keytruda/200ml Infusions (3 Weekly)
  • Ceased infusions @ 15 months (voluntarily)
  • Ct Scan – monthly, 3 yrs
  • Plus ultrasound for the emergence of thyroid lesions
  • Infusions & blood draws – I have lost count on how many – all my veins have long since collapsed

Keytuda worked

  • Large response at day 3 – all debilitating pain that inhibited breathing and movement ceased.
  • Day 4 to 19 – became very very ill due to the cytokine response, I was totally bed bound and in trouble. I came 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 – In the sake of brevity – we were all speechless – this was not expected, as we were aiming for a 9-month positive response at best. At this point, no one had succeeded, but I was to discover later that ‘Rose’ a patient on the earlier Keynote 029 trial had also succeeded, so I was number 2.

Please visit www.steveholmes.net.au/personal to fill in the gaps

  • Continued another 12 months of infusions
  • Continued to san intervals 3 monthly – remain NED
  • Now on 6 monthly

Interview

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 5 days my stools turned a pale clay color with a yellowing of the eyes and skin set in. This was followed by severe persistent itching over my entire body.

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.

As many will know, changing Doctors is very stressful. At that first meeting, we meet with a young woman who worked for the surgeon (Harald.) It was my understanding that we were going to discuss the removal of a blockage, but she seemed to be discussing cancer and a thing called a “Whipple”. It was only a few minutes into her prepared consultation, that Suzanne realized I had not been told that I had cancer. A very embarrassing moment for her, but an enormous abyss for me. From that moment on, Suzanne went from being very clinical to very considerate and caring.

I now had a cancer that I could not pronounce. I remember thinking very briefly- it can’t be all that bad because I had never heard of this before, but this was quickly shattered as Suzzanne outlined the scale of a Whipple op and its complications.

Too much to digest –

My Wife Claire went to Dr Google and then immediately phoned 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

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. We are a team and always have been so that’s how we approached the avalanches of information and overwhelm that seemed to come from nowhere.

We learned that knowing what mutations were driving my cancer’s growth, was vitally important. Cancer is an enormous dark subject, and knowing my mutations, helped screen out the avalanches of unnecessary information. It was still very scary, but less paralyzing and this helped free up my mind when making decisions.

I became very careful about what and who you let in, I was very vulnerable and fragile, the overwhelm was ever-present. My decisions were always mine, and I understood the value of having the right people in my head – this shaped how I made decisions.

All I wanted to see and hear was there is a way through this, I wanted evidence that others had succeeded. The medical world could not or seemingly would not give me any hope.

I had seen my younger brother go through a battle with Cholangio the Beast, only 2 years before. Graeme had taken the fight head on to Cholangio, but he became punch drunk from his effort and with no energy left, succumbed. I decided on a different tack, I created a parallel type world in my mind, a world where I embraced Cholangio the Beast. I could see myself walking alongside it, learning its ways, in the hope that I could somehow negotiate a better outcome.

There is no manual for overcoming this type of challenge, there is no right or wrong way, no tough or smart advantage, you just have to have an unconditional willingness in the absence of all hope, to simply get back up and take that next step. I learned to never question this – questioning just weakened my resolve.

My younger brother Graeme also had the exact same diagnosis in 2012. Graeme battled for just over 18 months – RIP 3rd May 2014.

This is a very rare and aggressive cancer that has a 6.8 month average survival period (excludes Liver cancer stats) – very similar to pancreatic, yet this is not hereditary.

On a lighter but serious note –

AND AS TRUE AS A ROO’S TALE

Fair Dinkum Mate – as True as a Roo’s tale
2012: I Broke my neck seriously in the GC100 Cycle Event – I was suddenly paralyzed from head to hip down my ride side for 8 months.
2013: Full recovery- My first ride in 9 months – a typical 5:00 am start in the pitch black for a “Surf to Turf ride from the Gold Coast’s coastline into the hills. As we neared the first big climb, I finally got to take my first turn at the front of our group of 6 riders, it felt great to be back! That was when “Life Happened On Me” once again – before I had time to settle in a Roo flashed out of the tree line and onto the road – I was hit head-on by a bloody big Roo. Now go figure those odds! Yet luck was somehow still on my shoulder. An angry Roo was entangled over my front wheel and handlebars, our heads clashed eyeball to eyeball for the briefest of moments before it slammed its tail into the ground and in one big bounce disappeared back into the dark tree line.

I was in shock and I could sense the panic from all behind me – I felt the confusion, concern, and fear from my riding buddies – had I broken neck again? and who was going to break the bad news to my wife Claire!  Ha !!!! I walked away with a black eye a busted bike and a bloody big Roo Story!

About Thoughts

Little did I know that they would lead me back to the safety of solid ground

These were and still are my inherent and dominant thoughts.

“Anything and Everything is possible, while you remain open to its reality. It’s your “Willingness Beacon” so that Opportunity and Luck can always find their way to you” – Sagh –

“My reality is my reality and your reality is yours” – this distinction and understanding became a critical component in preserving my sanity, and seeing through the statistics and those who believed in them.

Looking back, at my “thoughts” in the midst of extreme stress and chaos, and how I chose to act on them (the “thinking”) provided significant lessons in the opportunity of life. I had no idea as to the quality of my “Thought to Thinking” process at that time – who would. But with hindsight, I can now see with clarity that the “Mind” really does try to lead our body back to safety. Thoughts are the first ally, thinking upon those thoughts is the second, and listening to them is the third ally. I unknowing allowed this to flow and lead me – without this, I would not be here now.

Cholangiocarcinoma sneaks up from behind.

In 2016, little did I know that I was fast approaching the climb of my life, Cholangiocarcinoma typically only reveals itself when it is very advanced, throwing you into a fight or flight mode – for me it was very paralyzing, for a time I could do neither.

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Steve and Claire Holmes