PATIENT PERSPECTIVE

CHOLANGIOCARCINOMA AUSTRALASIA
PATIENT| RESEARCH | TRIALS| TREATMENT | SURGERY

Steve Holmes

CCA: Cholangiocarcinoma

  • Extrahepatic (Distal) Cholangiocarcinoma
  • Terminal – 6 months
  • Potential surgery candidtate

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.

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

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.

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

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.

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 that’s how we approach the avalanche of information and overwhelm that seemed to come from nowhere.

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.

I have certainly gained unique experience and skillsets from such a devasting health collision. Here are some extracts from my diary entries of 2017 and my recent summaries
A MESSAGE TO CHOLANGIO THE BEAST
  • It all happened in the briefest of moments, …
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 ….
View my story

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!


In 2016, little did I know that I was fast approaching the climb of my life.

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