A PATIENT PERSPECTIVE

Cholangiocarcinoma Australia

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.

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It is essential to use the intro kit at the very beginning, before making any big decisions.

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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

Trial One: Attica failed

Gem/Cis combination

  • Very difficult and debilitating.
  • Just short of 6 months I had an exponential metastatic breakout through lungs and across the top of the liver and under rib cage (Stage 4)
Trial Two: Keynote 158 – Keytruda succeeded
  • 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-headed, 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 – 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

The Checkpoint Pathway

Including CTLA-4  & PD1 checkpoints.
Speakers: James Allison, PhD, (MD Anderson), Gordon J. Freeman, PhD, (Dana-Farber), and Philip J. Gotwals, PhD) (Novartis)

  • Note my result was via Keytruda which blocks the PD1/PDL-1 pathway.
  • Also discusses Ipi/Nivo combo – Ipilimumab blocks the CTLA-4/B7 pathway

Surgery

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.

Chemotherapy

It would be easier to say that I became very sick for 5.5 days out of every 7. I lost a lot of weight due to a severely reduced appetite, and could only tolerate sweet foods, primarily smoothies, fruit, and ice cream.

  • Extreme weakness
  • Nauseous
  • Extreme loss of Appetite
  • Weight loss
Immunotherapy – Keytruda
  • Severe cytokine storm over 2 weeks
  • Severe body itching and scabbing
  • Weakness – accumulating

Note: Itching and weakness extended to 18 months post my last infusion

Video

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.

I have 3 sisters as well, all have had problems.

  • My youngest sister had Cervical Cancer in her 20’s – but all good now
  • My middle sister has Crohn’s
  • The eldest of my 3 sisters had aggressive breast cancer, but has now been through the 12-year mark.

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!

Perhaps I am better to explain my thoughts & thinking process, as in my view a positive attitude is just a derivative of my thinking actions. Positive is nothing in itself, just a word that I think is very overused and confused as an action.

My thoughts continually tried to lead me back to the safety of solid ground

Understanding that it’s all a process of converting thoughts into things, helped me through the overwhelm and into some blue-sky thinking. It helped me file it all into meaningful places – yes even the trash.

I taught myself to see it as a process  – Incoming ‘thoughts’ are the epigenetics sensors to my whole environment, and ‘thinking’ is the actions I take on those thoughts – It wasn’t 100 %  but it helped reduce clog and overwhelm. Sometimes I think it was just the challenge of this that distracted me -I will leave that up to others to decide. Either way, this had a significant impact.

Here are my two most dominant thought habits I created to think upon.

“Anything and Everything is possible, as long as I remained open and willing to its reality. This allowed my willingness to rise up from within, like a bright beacon so that Opportunity and Luck could find their way to me.”  I think we are all born with this beacon within, I think for many of us, it takes a significant event to switch it back on.

“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.

A little unrealistic often seemed to help

I immersed myself into these thoughts with such depth that it was real, I could somehow slip into my own “Alice in Wonderland” “Wizard of Oz” or “Where the Wild things Are” – sometimes I felt as if they were all one, and other times I just skipped from one to the next – yes pretty weird stuff, but I didn’t resist, I enjoyed it, but most importantly it allowed my dreams to find their realities without the need of anyone else’s approval.

Looking back with the benefit of hindsight

I had no idea that this TAT process would increase the quality of my “Thoughts to Thinking” – who would, but I can now see very clearly that the “Mind” really does try to lead the body in the right direction. I just had to listen for myself. (TAT was just my made-up acronym)

What do I think I have learned from this?

Thoughts are our greatest resource, the ability (& freedom) to think upon our thoughts is the second, then acting on them from within is our third most significant resource. I unknowing allowed this whole process to flow and lead me – without this, I would not be here now.

Cholangio the Beast busted through my front door

It was late 2016, and little did I know that I was fast approaching the climb of my life. Cholangiocarcinoma gave me no notice, thrusting me over an edge into a bottomless & suffocating abyss. When I landed I had to make fight or flight decisions – total paralysis sets in – yet I felt a strong urge to decide and quickly, for a time it seemed I could do neither. I did make a decision – it was neither fight nor flight, I had seen the results of both, I had to do it differently if I was to beat the dire stats.

And so the long climb began – in cycling terms, I had to find a rhythm and then begin grinding it out until I could see the top of this climb. 

I guess my personality ended up becoming my best weapon, I got over myself and out of my own way. I made the decision to try and walk alongside the beast, to its ways, and hopefully negotiate a better outcome. I also decided that I needed to become the best patient I could be.  I needed to lead and inspire all those skilled in cancer care to lift themselves above and beyond their best, so we could beat this cancer beast together.

I decided that I had to keep the pedals turning – but my mind wandered between my passions for cycling and running – In the beginning I pictured myself grinding it out on the climb of my life, but over time I mostly pictured myself running (& walking) – not sure why? 

I had to keep taking that next step and the one beyond that, no matter how painful, stupid, insignificant, or small it seemed in the moment. When you have cancer as serious as Cholangiocarcinoma, it’s all about surviving the moment – so any momentum is good, it is proof of life – and I chose life.

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Steve and Claire Holmes