The Luckiest Unlucky Guy I Know!
In every struggle, especially one as daunting as cholangiocarcinoma, there are those who rise to face their challenges head-on. Matt Reidy is one of those individuals. Diagnosed with stage 2 extrahepatic CC, Matt’s journey was marked by resilience and grit. He didn’t just return to life with his family—he found a new, hard-won sense of normalcy. Matt’s path wasn’t easy, but in each step, he discovered clarity and purpose, transforming his experience into what would become a light for others to follow.
Today, Matt dedicates himself to making the complex world of cancer care a bit more navigable. He knows that for patients and caregivers, the flood of medical information can feel overwhelming, even paralyzing. So he shares what he’s learned, simplifying the mountains of information into the insights he wished he’d had along the way. In doing so, he has become a guide—someone who’s crossed through the unknown and returned, lighting the path forward for those who feel lost, overwhelmed and weary.
For Matt, this work is about more than survival; it’s about giving others the strength to face each day with courage. Every community needs these wayfinders, those who embody the reminder that while the journey may be steep, there is always a way forward. Matt’s message to all who encounter this journey is clear: What may feel insurmountable can, in time, become a source of strength and purpose. His life is a testament to this, a true beacon of hope for those struggling to find their way.
Matt’s journey into the unknown depths of a cholangiocarcinoma diagnosis was anything but straightforward. From that first moment, he embarked on a path that would ultimately reshape his life and sense of purpose. In his video presentation, one particular highlight—a simple banana—stood out. While Matt may not have fully explained its significance, I see it as one of those strange, almost poetic connections in life—a small reminder of his resilience and the unpredictability of the journey he has endured.
Matt Journey: Shines a light on what is possible
In 2013, Matt’s life was suddenly disrupted by an unexpected diagnosis: stage 2 extrahepatic cholangiocarcinoma. As an IT professional, Matt was used to problem-solving, but this new challenge required resilience of an entirely different kind. Despite his diagnosis, Matt approached each step of his journey with the mindset of not just surviving but finding meaning and purpose along the way. Now, he shares his story to provide hope and practical support to others on the same difficult path.
But it wasn’t an easy road. In the early years, Matt faced the realities of his diagnosis head-on, navigating setbacks and breakthroughs in pursuit of hope and healing.
Facing Down Cholangiocarcinoma: The Early Years
Matt’s symptoms were subtle at first: mild itching, fatigue, and a feeling of being “off.” Routine blood tests revealed alarming liver enzyme levels, leading to further investigation. What followed was a whirlwind of tests and a diagnosis that altered everything. Initially treated with a liver resection, Matt received promising news—clear margins and even the word “cured.” But one year later, he faced recurrence, a challenging reality for many cholangiocarcinoma patients. Despite multiple surgeries, chemotherapy, and six grueling weeks of radiation, Matt’s battle was far from over.
As he would say, “I’m the luckiest unlucky guy I know.” But I see it differently—yes, he’s been fortunate, but in truth, Matt made his own luck. His journey has been defined not only by resilience, a trait when responding to cancer but by qualities that set him apart: a natural discipline and inquisitiveness. This relentless drive to ask questions, seek answers, and challenge what he was told allowed him to uncover options and possibilities that might have otherwise been overlooked.
It was this consistent tenacity that kept Matt’s momentum going, helping him find an unseen pathway and, ultimately, beat the odds.
In 2015, his medical team identified an actionable mutation in his tumor’s genomic profile, leading to treatment with Keytruda (Pembrolizumab), a groundbreaking immunotherapy that finally brought him to a state of No Evidence of Disease (NED)—a milestone he has maintained ever since.
Matt’s Diagnosis and Treatment Highlights
Here’s a closer look at the critical steps in Matt’s journey—his diagnosis, treatments, and the pivotal moments that defined his fight against cholangiocarcinoma.”
- Diagnosis: In December 2013, Matt began experiencing mild itching and fatigue, symptoms that initially seemed inconsequential. Routine blood tests, however, revealed alarmingly high liver enzyme levels, prompting further investigation. He was soon diagnosed with stage 2 extrahepatic cholangiocarcinoma at a top Virginia hospital, a rare and aggressive cancer of the bile ducts.
- Initial Surgery: To address the cancer, Matt underwent a liver resection that removed affected portions of his liver. Surgeons achieved clear margins during this operation, providing a sense of hope, and the term “cured” was even cautiously mentioned.
- Recurrence: One year later, at his post-resection check-up, Matt’s CA 19-9 tumor marker levels had risen, and imaging revealed a small lesion in the peritoneal cavity, indicating a recurrence. This recurrence marked a critical juncture, as Matt was advised that further resection would be challenging due to the tumor’s proximity to vital structures.
- Chemotherapy: He began a regimen of Gemcitabine and Cisplatin at the Medical College of Virginia, though he only completed two rounds (six infusions) due to the severe side effects. Despite this, his CA 19-9 levels dropped temporarily, a sign the treatment was having some impact.
- Failed Surgery and Radiation: Returning to Mayo Clinic for surgery to remove the recurrent tumor, doctors found it too close to the bile duct to safely excise. To manage the tumor, Matt subsequently underwent Intensity Modulated Radiation Therapy (IMRT) combined with oral capecitabine chemotherapy over six weeks. Unfortunately, this treatment didn’t yield the desired outcome and led to permanent pancreatic endocrine dysfunction, requiring lifelong enzyme replacement therapy.
- Keytruda (Pembrolizumab) Breakthrough: In 2015, genomic profiling through FoundationOne revealed a MLH1 mutation, a mismatch repair deficiency that made Matt a candidate for Pembrolizumab (Keytruda), a then-new immunotherapy. Matt’s disease profile did not meet eligibility for a clinical trial, forcing him to cover the costs of Keytruda out of pocket. Despite this financial strain, he began treatment with Dr. Andrew Poklepovic in Richmond, leading to a dramatic drop in his CA 19-9 levels. Since beginning Keytruda, he has remained in No Evidence of Disease (NED) status.
Reflecting on his journey, Matt shared his insights with others, hoping to inspire and uplift the cholangiocarcinoma community. In 2017, he addressed the Cholangiocarcinoma Foundation Conference with a message that echoed his gratitude and strength.”
A Message of Hope
In his 2017 presentation at the Cholangiocarcinoma Foundation Conference, Matt reflected on his journey, expressing deep gratitude for the advances in research that led to treatments like Keytruda. He encouraged patients and caregivers alike to keep hoping, to keep fighting, and to remain open to new treatment possibilities. Matt’s story is not only one of survival but also one of resilience and community—a story that reminds each of us, as he put it, to find meaning in the struggle and to use our experiences to light the way for others. For a deeper look into Matt’s journey, read his original story: The Luckiest Unlucky Guy
Yet Matt’s impact extends beyond his own journey. Determined to help others navigating similar paths, he turned his experience into actionable resources and community support, reaching patients far and wide.
Expanding His Reach: Genomic Focus and Community Building
Matt’s journey didn’t end with his own treatment. Together with his colleague Wei Wang, he co-founded Genomic Focus, a service designed to guide cancer patients toward personalized treatment options. Genomic Focus is a lifeline for those navigating complex treatment decisions, offering tailored, actionable insights for patients at no cost. Matt’s experience in the trenches of cancer treatment informed every aspect of this service—he knew firsthand how precious time and clear information can be.
Beyond Genomic Focus, Matt has become a pillar in the cholangiocarcinoma community, founding the Cholangiocarcinoma Immunotherapy & Targeted Therapy Facebook group. Here, patients and caregivers find not only support but a source of clarity in the often confusing world of targeted and immunotherapy options. Matt has transformed his experience into a guiding light for others, helping them make informed decisions and navigate the emotional toll of this disease.
Circling back
In 2019, Matt and I connected which began solidifying a shared mission that drives both our work to this day. Together with Claire and Mandy we continue building bridges for patients and caregivers, helping light the way forward.
Making the most of a bad situation is cliche but absolutely true at its core – need is what drives us to this day. Thank you to the Cholangiocarcinoma Foundation who provided scholarships to both Mandy and me – the beginning of a long meaningful and constructive friendship.
Meeting for the first time: 2019
Matt, Steve, Claire and Mandy Wallace (CCF NZ)
Cholangiocarcinoma Foundation Australia
Facebook Page
Facebook Community
[…] there is also maverick patient in the mix – Matt Reidy from Virginia USA who did not qualify for a trial, but privately funded his own successful […]