My Story
My story with cholangiocarcinoma began in late 2021, when what doctors thought was gallbladder trouble turned out to be something far more serious — a rare and aggressive bile duct cancer. In May of 2022, I had a partial liver resection, and I hoped that would be the end of it. Unfortunately, in 2023 the cancer came back in my abdominal lining (peritoneum), and since then, my life has been a series of treatments, setbacks, and small victories.
Between 2023 and 2024, I went through multiple rounds of chemotherapy and immunotherapy. Each time, we hoped it would control the cancer, but each treatment eventually failed to prevent the cancer from progressing. By mid-2024, I was told we had run out of standard treatment options. The chemotherapy and immunotherapy options available for cholangiocarcinoma in Canada were no longer working. I did not qualify for any clinical trials in Canada. And the OncoHelix panel done on my primary liver tumour did not show any targetable mutations. As a wife and a mom to two teenage boys, I wasn’t ready to hear that. That moment was when my advocacy journey began.
In partnership with the Canadian Cholangiocarcinoma Collaborative (C3), I pushed for molecular testing on the secondary tumours in my peritoneum, and that effort changed everything. We discovered that the secondary tumours carried an FGFR2 mutation, which opened the door to a targeted therapy called Pemigatinib. It wasn’t easy — the drug was not yet funded in Canada — but with C3’s and my oncologist’s support, I was able to start this treatment in late 2024. My two most recent scans are showing hopeful signs that the tumours are shrinking.
Furthermore, thanks to C3’s connection with my oncologist, a lasting partnership was formed with my cancer centre — and the impact goes far beyond my own care. Earlier this year, I met a newly diagnosed cholangiocarcinoma patient being treated by a different oncologist at the same centre. Because of the relationship C3 had already built, that oncologist immediately reached out to access C3’s molecular testing program, giving this patient faster access to potentially life-changing treatment. To me, that’s the power of advocacy in action — a win that extends far beyond just one person!
I would not be where I am today without C3. Their advocacy, resources, and relentless work have given me more options, more hope, and more time with my family. That’s why I am so passionate about giving back, raising awareness, and helping other patients facing this devastating disease.
This September, I’ll be serving as an Ambassador for the first-ever CholangioCycle Challenge. It’s more than just a fundraiser to me — it’s a way to unite people across Canada, to ride together for awareness, for research, and for every patient and family touched by cholangiocarcinoma.
I ride for myself. I ride for my family. And I ride for the future we’re all still fighting for.
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