If your path is blocked then go around, sometimes the longest way home is the quickest way home

UnCancered

The Claire and Steve Holmes Story.

Steve went from being a healthy passionate cyclist to a terminal cancer patient with just days to live, then back to cycling 400kms per week, and pioneering a new integrated patient-led era in cancer response.

Steve, aided by Claire, had defied the impossible, flipping ‘Cholangio’ on its head to record a historic medical milestone – a dynamic ‘full-and-complete-response’ something never before achieved from such a late-stage setting.

What is Cholangiocarcinoma

Cholangiocarcinoma originates in the lining of the bile ducts. Bile Ducts are slender tubes that collect and transport the bile produced in the liver down to our small intestines where the bile helps break down the food we eat.

Bile duct cancer presents grim statistics: only 3 to 5 percent of patients survive beyond five years, with the average prognosis between 7 to 12 months. With surgery the only medical curative option the post-diagnosis approach has been a mostly passive ‘care’ and palliative strategy.

Symptoms, Diagnosis & Treatments

How did it begin?

It began on an easy Saturday morning coffee ride with friends with Steve experiencing a sudden onset of fatigue. Returning home to lay on the couch he noticed his eyes and hands had become yellow, so a doctor’s appointment was made for the next morning. It took just a few days to establish a blockage in the bile duct was cancer.

Steve’s Diagnosis

Steve was diagnosed with Stage 2b Extrahepatic and Distal Cholangiocarcinoma, located near the pancreas, and given a 6-month prognosis. He was eligible for Whipple surgery. Only 15% of patients qualify for surgery and of those 85% see a recurrence within a year, contributing to the grim 3-5% five-year survival rate.

Whipple Surgery

The Whipple is a multi-organ procedure, undertaken by a team of 7 surgeons, involving the removal of:

  • 95% of the Bile Duct
  • 100% of the Gallbladder (Cholecystectomy)
  • 80% of the Stomach (Gastrectomy)
  • 33% of the Pancreas (Pancreatectomy)
  • 100% of the Duodenum (Small Intestine)
  • 2 local lymph nodes

Surgical Complications

Post-surgery, Steve faced 6 weeks battling invasive surgical infections and an emergency situation 1 month post-op: a life-threatening aneurysm in the main Hepatic Artery, narrowly avoided with seconds to spare.

The total surgical effort amounted to 25 hours.

Clinical Trials

His cycling conversations amused the surgical team, but more importantly became a vital bridge to the next stepping stone following the extensive surgeries and with no further traditional treatment options available. A clinical trial that as the surgeon speculated would probably not work. As Steve put it, – ‘They threw me a bone to chew on.”

ACTTICA-1 Trial: Dual Chemotherapy

  • Endured weekly, 12-hour chemo sessions, badly tolerated.
  • At 5.5 months, a dynamic metastatic breakout under his ribcage, across the top of the liver, and in both lungs.
  • Progressed to late-stage, Stage 4; removed from the trial.
  • Prognosis: weeks to days.
  • The condition worsened, with laboured breathing, and unable to remain seated.

Keynote 158 : Immunotherapy

  • Last resort Hail-Mary pass. Too weak to sit or hold a pen, his oncologist assisted him in signing consent.
  • His Oncologist with a warm and assertive smile exclaimed after the signing: “Steve all you need to do now is stay alive for 30 days until the first infusion. We’ve got this, we will drive this straight through the centre of the barn doors.”
  • Underwent his first 3 weekly infusions, in August 2017.
  • Responded on Day 3, all pain had dynamically gone and he could sit up and walk freely.
  • Day 4 onset of a severe Cytokine Release Syndrome (CRS Level > 3+) lasting for 12 days
  • Achieved a complete and full response, confirmed at the 9-week scan.

Quote – On Becoming Cancer Free

A Graduating Moment: In a moment that felt akin to graduation, my oncologist, Matt, offered a few transformational words of wisdom: “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 with the opportunity you have been given – see you in 3 months”

Steve and Claire’s story is about –

Shifting Perceptions And Changing the Angle of Attack

How does anyone survive an unsurvivable diagnosis? Go around it, walk on water, do whatever it takes– the only right way is whatever works.

When cancer blocks our path we must pause, find our poise, and see it as it is, not as we fear it to be. Only then can we see it clearly and begin taking steps within our power. We cannot control that we have cancer, but we can control how we respond to it. Understanding the reality of cancer—stripped of its reputational wrapping and mythical fears—frees and empowers our minds to respond with deliberate actions and the perseverance needed to repair our health.

Translating Success To Process

ICU hospital beds provided the seed and motivation, and cycling provided the introspection, vision, and transformative workshop.

Their Experiences Identified A Critical Gap

Professionals excel in diagnosing and treating but are not as adept in preparing patients for the challenge of overcoming cancer beyond that point.

In response to this critical gap, the Optimal Cancer Response Process (OCRP) was conceived. OCRP represents a paradigm shift, transforming the conventional healthcare model into a comprehensive, patient-integrated response strategy. It simplifies the complexities of cancer treatment while weaving in essential human attributes—objectivity, perception, action, and willpower—into the fabric of a response. By systematically breaking down the cancer journey into manageable steps, OCRP equips patients to become co-pilots in their treatment, fundamentally shifting how we respond and survive a cancer diagnosis.

Steve and Claire’s initiatives span three crucial areas

They innovate and develop process-driven response solutions and strategies for cancer patients across three key areas, aiming to significantly enhance today’s patient outcomes.

  • OCRP – Optimal Cancer Response Process: The OCRP initiative goes beyond mere patient involvement by implementing a higher level of integration. It represents a comprehensive fusion of medical science, evidence-based medicine, best practices, and human resilience capabilities, marking a fundamental shift in both perception and action when responding to a cancer diagnosis.
  • Cholangiocarcinoma Foundation Australia: A patient-led initiative that delivers response solutions and strategies, providing highly targeted support and education not only for patients but also for their communities, medical professionals, and the broader industry, fostering a united response against Cholangiocarcinoma.
  • cancerREADY Workplaces: – Cancer’s CPR: Expanding the OCRP principles to the workplace, cancerREADY Workplaces offer readiness, response, and support solutions before they are needed, directly mitigating the dire statistics associated with late-stage cancer diagnoses.

Pioneering Patient-Led Integration

In embarking on this journey, Steve and Claire have not only navigated the tumultuous waters of a cancer diagnosis but also transformed how we approach a serious cancer diagnosis—from traditional ‘care’ to a more proactive ‘response’ style.

The Optimal Cancer Response Process (OCRP), alongside the Cholangiocarcinoma Foundation Australia and cancerREADY Workplaces, epitomizes this shift towards a patient-integrated cancer response.

Their pioneering approach stands as a beacon, illuminating the path for patients, caregivers, and professionals towards a more complete and comprehensive, patient-integrated, process-driven approach to diagnosis.

Steve and Claire’s story is a testament to the power of shifting perceptions and changing the angle of attack against cancer, proving that when we reimagine our approach, we can indeed turn the tide in this fight.

A Final word from Steve and Claire

What we undertake today is the embodiment of that “something special” Matt highlighted. Contributing to the empowerment of others, offering them the tools and knowledge to face their battles, stands as the ultimate reward and purpose of my efforts – a heartfelt thank you to Matt.

What was different about Matt? Apart from the skill and expertise required as an oncologist, as fellow cycling tragics, we shared the attributes of human resilience; An open mind, bold deliberation, persistent creativity, and an unrestricted willingness toward our objectives. Hills are not climbed from the couch, they require endurance and belief beyond the pain. And so you now see the seeds of my integrated response process approach?

We sincerely hope that our personal experiences can drive and shape innovation and change in healthcare, that improves patient outcomes by today’s measure. We are about ensuring that today’s science benefits today’s patient survival.

Steve’s Quote

Cancer has been a very deep challenge. Equally deep has been distilling our successes into a process patients can easily understand and benefit from.

We quickly realized that the task of extracting lessons from their emotional cocoons revealed a profound truth: the emotions were not just carriers but integral components of each success.

Additional

Optional Information

2 brothers diagnosed with the same aggressive terminal cancer and 6 months to live.

“Steve survived, but Graeme did not. Steve’s survival became part of a modern-day medical breakthrough, providing a new pathway for how patients can better respond to and survive a serious cancer diagnosis.”

Surviving stage 4 metastatic and terminal cancer is remarkable in itself, it attracts attention, and therein lays a new unexpected responsibility.

Cancer patients suffer a lot, that’s what it is to be a patient, so anything that I can do to alleviate that suffering is a good thing, a positive thing, a meaningful thing. Sharing my story, knowledge, experiences, and wisdom in the best way possible does exactly that, it helps make other patient’s lives more liveable and shines a light on what is possible.

I find a lot of patient suffering comes from not understanding things and the confusion and overwhelm that comes from that. So helping people understand their diagnosis and options is a good start to improving their survival chances.

I have also learned the advantages of becoming cancer-ready, just as CPR awareness and basic knowledge can improve survival rates.

Personal and Details
  • Originally from Waikanae, New Zealand, moved to the Gold Coast in 2005.
  • Married with children: Zach – London, Georgia – Australia.
  • Steve’s cycling provides an “introspective workshop on wheels, filtering thoughts, experiences, and concepts inspiring innovation and transformative thought.”
14,000 Cycling Challenge

Steve is cycling the equivalent of Australia’s coastline to raise funding for Patient Navigator Journals to be delivered free to every patient. Imagine pedaling around the entire coastline of Australia – that’s 14,000 kms. It’s a challenging journey, but one with a purpose far greater than the distance.