Understanding Cachexia in Pancreatic Cancer

The video What E-5186 Means to Me offers a powerful and personal glimpse into Christopher Cutler’s journey—a son advocating for systemic change in pancreatic cancer care after the loss of his mother, Heather. It’s a heartfelt message that only scratches the surface of the immense challenges families face when navigating the world’s deadliest cancer.

Christopher’s story resonates deeply because it’s not just about loss; it’s about the fight for better outcomes, equity in care, and the strength required to challenge a healthcare system that often falls short. In the video, Christopher shares how his family’s experience inspired this petition, E-5186, which calls for actionable steps to improve care for Canadians living with pancreatic cancer.

We had a chance to sit down with Christopher to ask him more about his journey, the obstacles his family faced, and the hope he has for systemic change. Here’s the short interview, offering a deeper look into a story that’s driving our movement for change.

What inspired you to share your mom’s story through this petition and video?

There’s a lot of information out there about pancreatic cancer—articles, research—but for me, this had to be personal. Our foundation had done a lot of writing, and I’ve always felt audio is where I’m strongest, but when I started combining audio with visuals and music, something clicked. Using tools like Canva, I realized I could take existing footage and make it into something polished, something meaningful—all from my phone. For some reason I just prefer to make everything on my iPhone.

I’m always looking for ways to connect with people and really make them care. That’s what this video is about. Why my mom? She’s the most important person in my life. This was one of the biggest events I’ve ever gone through, and I couldn’t just let it slide.

I’ve heard too many stories of people struggling with access to trials, treatments, or funding, and the government isn’t doing enough. After everything my family went through, I can tell you at least five things off the top of my head that someone newly diagnosed with pancreatic cancer needs to know: get somatic testing done, make sure you’re on pancreatic enzymes, get on support groups as quickly as you can, and ask about nerve blocks, to start.

My mom was a nurse for 35 years. She trusted the system, but we had to fight so hard—researching late into the night and prepping for every single appointment—to get her the care she deserved. It’s not right that families have to do this.

This video and petition are my way of honoring my mom and making sure no one else has to face the same barriers we did. My mom’s story isn’t a tragedy—it’s a testament to the gaps in our healthcare system. And those gaps have to close.

How did your family navigate the challenges of the healthcare system after your mom’s diagnosis?

At first, I was completely in denial. I didn’t even know what a pancreas was, let alone how devastating pancreatic cancer could be. I was just trying to wrap my head around the fact that it was cancer at all—I didn’t realize it was one of the deadliest cancers out there, with a 90% chance of taking someone’s life before five years are up.

Once the reality hit, my sister and I just switched into high gear. Every night, we were diving into academic research, breaking down studies, and running through every possible option. Neither of us had a medical background—I studied Asian studies, and she works in finance—but we became advocates for my mom. We never walked into an appointment without being fully prepared.

We had to ask for everything—pancreatic enzymes, nerve blocks, somatic testing. None of it was offered to us; we had to push for it. Even clinical trials were only brought up as a “maybe someday” option if her cancer progressed. But we now know that’s not how it should be.

What inspired me to share my mom’s story through this petition and video is the profound impact of her journey and the systemic challenges we faced throughout her treatment. The video offers a condensed version of what happened—there’s so much more to the story, but I had to be selective to avoid overwhelming people in such a short format. There’s only so much you can convey in five minutes. As the organization grows, I plan to release snippets and more detailed parts of her story over time, so people can fully understand the barriers we encountered and the urgent need for change.

One example that wasn’t included in the video is a critical moment during her treatment. At one particular appointment, my sister sat on the bed closest to the camera, while my mom, Heather, and my dad were seated in the chairs. I was nearby, waiting for the oncologist to come in. We had a sinking feeling that this would be the moment they decided to stop chemotherapy. We had prepared for this possibility and, as always, had a backup plan. On March 1, 2024, after receiving a second opinion from Johns Hopkins in Maryland, I sent an email to her oncologist outlining a plan for NALFIRINOX as a fallback chemotherapy option. The team at Johns Hopkins felt strongly that this regimen could help if she progressed on her current treatment before her clinical trial opened later that summer.

However, we were informed that our provincial MCP would require a pre-approval letter sent to the Assistant Medical Director before the drug could be authorized. I took it upon myself to reach out to Eastern Health’s medical teams, their “drug specialist,” and four different biopharmacies, before finally contacting the manufacturer directly. Despite a reported shortage, the manufacturer confirmed that they could source the chemotherapy if our oncologist reached out to them.

When we attended this appointment, we expected the oncologist to have a clear plan in place. Instead, it felt like the discussion about NALFIRINOX was happening for the first time. To this day, I don’t understand what went wrong. What I do know is that the delays and lack of urgency cost my mom precious time that she didn’t have. In pancreatic cancer, progression leaves no room for hesitation—swift action is absolutely critical. Tragically, my mom developed ascites shortly after stopping chemotherapy and passed away within two months.

Emotionally, it was a nightmare. I’m not going to lie, there were nights I’d punch my headboard out of frustration and drink myself to sleep. Losing my mom was unthinkable—she was my whole world. It was unbearable, but we had to keep going because she was still fighting.

We learned quickly that we couldn’t trust the system to guide us. To so many, once you get that diagnosis, they’ve already made their mind up and you just unfortunately are written off. Why try? They feel the outcome will be the same. It was up to us to make sure my mom got the care she needed, and that’s not something any family should have to do alone.

What were the roadblocks you faced in accessing somatic testing and clinical trials?

This one is hard because it’s so sad, and the ripple effect of it all is massive. Somatic testing wasn’t something that was ever brought up to us. We’d read a lot from Pancan and Craig’s Cause, so we brought it up ourselves at one of her appointments. Her oncologist repeated what we said but then dismissed it—she said it was expensive and only about 2% of her patients saw actionable results

The thing is, precision medicine is moving fast. There’s always something new being approved, and these mutations don’t just matter for clinical trials down the road—they can benefit people immediately, whether that’s through trial access or FDA-approved treatments.

Her oncologist did find a testing site for us in Vancouver that offered free testing. My mom was prepared to pay out of pocket for a foundation-based test, but we thought we’d give this free option a shot. Unfortunately, the testing site missed her high TMB, which would have made her eligible for immunotherapy with Keytruda.

By the time a U.S. oncologist discovered the high TMB, her condition had deteriorated too much. I’ll never forget when we FaceTimed with the oncologist in the States, and he was so excited to start the treatment. My mom perked up—she was ready to fight again. But then her oncologist here told him she wasn’t well enough. Getting that email, knowing it was over, just broke me. I couldn’t even tell her. My sister had to because I just… I couldn’t.

Looking back, I wish we’d just gone with the paid test first. It’s something I’ll always struggle to forgive myself for, but it’s also why I’ll never stop stressing how important it is to get this testing done through reputable providers. Families shouldn’t have to guess or gamble with something so critical.

How did the lack of national healthcare guidelines impact your mom’s treatment?

It’s huge. The gaps in national healthcare guidelines create a ripple effect that affects everything. Without clear guidelines, patients don’t get somatic testing—either because they don’t know it’s an option or because their oncologist doesn’t support it. That means they miss out on knowing whether they qualify for specific clinical trials or if they have actionable mutations that could open up other treatment options.

Even if they manage to get testing, the problem doesn’t end there. Outside of Ontario, BC, Quebec, and Alberta, there are no precision medicine-focused trials for pancreatic cancer. So, even if you have the data, what can you do with it?

What national guidelines could solve really depends on how they’re implemented. It’s not enough to hand out a piece of paper listing best practices. Advocacy organizations like Pancan and Craig’s Cause already do that. We need the government to step up and make these best practices part of every patient’s treatment plan—things like incorporating somatic testing and clinical trial discussions into the standard of care.

But we also need short-term solutions while we work on longer-term goals like decentralized trials. That means addressing geographical barriers so people in smaller provinces aren’t excluded from life-saving treatments.

The government has to get on board with this. We need somatic testing covered, and we need to rethink how funding approvals work in this country. Right now, everything about the system makes it harder for people to survive. That has to change.

Why is it important for Canada to decentralize clinical trials and increase accessibility in rural areas?

Because more than 40% of Canadians live in rural or smaller provinces. If we don’t increase accessibility, we’ll keep seeing low participation in clinical trials, and the progress we so desperately need in pancreatic cancer outcomes will continue to stall.

What’s really alarming is that research shows pancreatic cancer is on the rise in younger generations—millennials and Gen Z—and it’s projected to become one of the top three diagnosed cancers. Combine that with a survival rate of just 10%, and it’s clear something has to change.

Canada also has to stop relying solely on advancements from the U.S. So many of the treatments we have now came from piggybacking off their research. We need to start contributing to global progress, not just for Canadians but for everyone. It’s about stepping up and taking responsibility on the world stage.

Decentralizing trials is key to all of this. Without it, we’re leaving half the country behind.

What role do programs like CRAFT and Health Canada’s clinical trial modernization play in your advocacy?

These programs are promising, but people need to understand what they really are. CRAFT, for example, is a framework with some trial sites in Canada—it’s not a remote access solution like telehealth, where someone can easily join a trial anywhere. It’s exciting, yes, but it’s not addressing the unique geographical challenges we face in Canada just yet.

Health Canada’s clinical trial modernization efforts are a step in the right direction, but the groundwork to make these programs impactful is still missing. And then there’s the issue of regulatory and funding environments here. Agencies like pCPA are supposed to help, but they often end up being barriers instead. The way these agencies are structured—being government-owned—creates conflicts of interest that shouldn’t exist.

To make these programs truly effective, we need foundational changes. It’s not just about frameworks; it’s about creating an environment that encourages drug approvals and trial accessibility for all Canadians, not just those in big provinces.

What changes would you like to see implemented right away to improve outcomes for pancreatic cancer patients?

Right now, oncologists need to take immediate steps to discuss somatic testing, pancreatic enzymes, and nerve blocks with patients as part of standard care. These are things that can make a real difference today.

But it’s not just about the conversations—it’s about support. We need dedicated clinical trial navigators, especially in smaller provinces like Newfoundland. Our oncologist was honest and told us she didn’t have the time to search for clinical trials. I respected her honesty, but the fact that families are left to figure this out on their own, or rely on third parties, is unacceptable.

Clinical trial eligibility changes so frequently—sometimes biweekly. Expecting someone who’s sick, often dealing with chemotherapy or other treatments, to handle this on their own without family or support is completely unrealistic.

We need a system where patients aren’t left to navigate these barriers alone. Immediate changes in communication and resources could make a significant difference while we work toward long-term systemic improvements.

Why do you think geographic location continues to be such a barrier in Canadian healthcare?

It all comes down to infrastructure. Smaller provinces like Newfoundland don’t have the resources needed to support things like somatic testing—we don’t even have the ability to process it here. Doctors tend to be concentrated in higher-paying provinces, and high-volume centers are located in high-population areas.

The result? People in smaller provinces face longer wait times, gaps in knowledge, and disparities in care. And those disparities translate directly into differences in outcomes.

If you’re in Newfoundland, for example, enrolling in a clinical trial just isn’t an option—no matter what your eligibility is. That’s not just unfair; it’s unacceptable. Where you live shouldn’t determine whether or not you can access life-saving treatments, but it historically has and will continue to unless we commit to changing that.

What message do you want families going through similar experiences to take away from your story?

Always ask more questions. If you’re far from high-volume centers, unsure about treatment options, or feel like something’s missing—reach out. Connect with organizations like Craig’s Cause, Pancan, and Pancreatic Cancer Canada. And find a support group. Those groups are invaluable.

If you hear about a treatment or trial someone else is considering, ask your oncologist why it’s not an option for you. Push for answers. Hold everyone involved to the same level of accountability. This is your life or your loved one’s life—don’t be afraid to demand better.

From the moment you get that diagnosis, you’ll start to find strength you didn’t know you had. It’s going to be hard, but you can fight. And while you’re fighting, don’t forget to cherish the day-to-day moments. Show love in your caregiving, have those conversations, and don’t hold back.

We can’t accept the healthcare status quo anymore. No one wants pity. They want change—real solutions. And it’s up to all of us to make that happen.

How can signing this petition help create meaningful change in the healthcare system?

Everything starts small. The advocacy series we created started as a single idea. That turned into a website, which grew into an organization, and now we have this petition. It’s a natural progression, but it’s also just the beginning. If you think we’re stopping here, you’re mistaken.

In countries like the UK and the US, there’s been real momentum around pancreatic cancer advocacy. Governments are making commitments, pushing for research funding, and actually addressing the issues. We haven’t seen that in Canada—not yet.

This petition is about getting Parliament to finally take pancreatic cancer seriously. It’s about honest commitments to improve care for Canadians now and for future generations who will face this disease. Signing this petition is a step toward building a better system, one that ensures no one is left behind.

What resources are available on HeatherCutler.ca for families navigating similar journeys?

HeatherCutler.ca is more than just a resource—it’s a space to get involved, to contribute, and to create change together. It doesn’t belong to one person or one organization; it belongs to everyone fighting to make a difference in pancreatic cancer care.

We’re rewriting the playbook for advocacy. Right now, it’s a petition. Tomorrow, it could be a proposed bill, a policy change, or a new framework for care. There are so many ways we can all contribute, whether it’s by signing, sharing, learning, or speaking up. This isn’t just about information—it’s about action.

Cancer care is rapidly evolving, and this platform evolves with it. Every realization, every piece of feedback, adds to its growth. The site is designed not just to inform but to empower families to take action—offering practical advice, time-saving tools, and ways to navigate the system.

Most importantly, it’s about creating a space where everyone’s voice matters. Advocacy is at the heart of everything we do, and HeatherCutler.ca is here to help shape the future of pancreatic cancer care—for all of us.