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Table of Contents
About Pancreatic Cancer
Connor’s Story: The Reason Behind This Playbook
What Is A Clinical Trial?
Why Do Clinical Trials Matter?
The Team Behind A Clinical Trial
How to Find Clinical Trail
The Building Blocks Of A Clinical Trial
How Your Health And Safety Are Protected In A Clinical Trial
The Team Behind A Clinical Trial
Why Participate In A Clinical Trial
How To Find Clinical Trials
Your Journey Through A Clinical Trial: What To Expect
Considering A Clinical Trial: Is It Right For Me?
Before You Join: Questions To Ask
Beyond The Treatment: Costs, Travel And Reimbursement for Clinical Trials
Managing Clinical Trial Costs: Key Resources And Tips
If You Are Eligible: What to Expect If You’ve Been Accepted in a Clinical Trial
If You Are Not Eligible: Next Steps
Key Takeaway
Patient Timeline
Connor’s Story: The Reason Behind This Playbook
The Diagnosis
In December 2021, after ongoing abdominal pain, Connor’s scans suggested pancreatitis, but repeated biopsies did not give clear answers. At just 38, pancreatic cancer seemed unlikely until April 2022, when a biopsy confirmed stage IV pancreatic cancer. From day one, Connor’s focus has been simple: be there for his boys. Throughout treatment, he and his family lived by a “no stone unturned” approach, pursuing every possible treatment, clinical trial, and supportive care option.
Testing and Trials
Genetic testing became a priority. Getting enough usable tumour tissue was difficult, but persistence paid off. Results showed an inherited change in a gene called ATM, plus cancer-specific changes in KRAS and FGFR1. This information shaped Connor’s treatment and opened doors to trials. The ATM change helped explain his strong response to a certain chemotherapy (Folfirinox) and suggested he might benefit from a targeted drug called Olaparib and from radiation. Testing also brought peace of mind as his children were not at risk for a rare childhood condition linked to ATM.
He and his family began researching clinical trials early, and in September 2023, Connor joined a promising early-phase trial for a KRAS-targeting drug in Cincinnati. Within five weeks, his main tumour had shrunk by more than 50 percent, giving him months of feeling stronger and more like himself.
Get Early Molecular or Genomic Testing
Get Early Molecular or Genomic Testing
If you are able, get molecular or genomic testing done as early as possible, ideally at the time of diagnosis or treatment planning. Even if you're unsure how or where to have it done, take the first step. Testing results can take time, and waiting for a clinical trial to come up before testing may delay access to personalized treatment options.
Make sure results are stored in your medical record at the treating institution so they're readily available for clinical trial eligibility review.
Why it matters: Early testing can uncover mutations or biomarkers that open the door to more targeted treatments or trials, even ones you may not be aware of yet.
The End of His Life, but not His Fight
By March 2024, signs of the cancer growing again meant it was time to switch treatments. The trial gave precious time, hope, and memories. Connor fought with determination, supported by exceptional care, family, friends, and a deep belief that he could beat the odds.
Connor Page passed away at home on October 10, 2024, at the age of 41, surrounded by his wife, two young sons, his mother, and sister. Known for his humour, kindness, and authenticity, Connor was deeply loved by family and friends
.Determined to help others, Connor was driven to improve access to clinical trials, inspiring the creation of the Connor Page Fund for Improved Access to Clinical Trials with Pancreatic Cancer Canada. A key part of this legacy is “The Connor Page Playbook for Navigating Clinical Trials,” born from his and his family’s life-altering experience. What began as one family’s journey has grown into a resource with the power to profoundly support and benefit the wider pancreatic cancer community. The knowledge and insight they gained are an invaluable gift, offering guidance, hope, and practical help to others. Connor’s courage and generosity will continue to create ripples for years to come.
This is for Connor, and for you.
Get Early Molecular or Genomic Testing
You Are Not a Statistic
Jen and Connor chose not to look at statistics. “No one person is a stat,” Jen said. “Everyone’s journey is unique. For us, that shift helped us focus on hope.”
Why it matters:
Clinical data can be helpful, but it doesn't define you. Focusing too much on numbers may be overwhelming and impersonal. For many families, stepping away from the stats and focusing on individual strength, support, and possibilities can make space for optimism and clear decision-making.
What Is a Clinical Trial?
Clinical trials are research studies designed to help us better understand cancer and find more effective treatments. These studies evaluate new medications, treatment approaches or medical procedures to see how well they work compared to current treatments. Clinical trials can be an option at all stages of cancer care. They are essential to advancing cancer research and improving patient outcomes.
Why Do Clinical Trials Matter?
Clinical trials play a key role in advancing cancer care. Much of the progress in cancer treatment comes from these studies. They give researchers the opportunity to test new treatments and gives patients access to promising therapies that might not yet be widely available. These may include:
- New chemotherapy options.Personalized (precision) medicine such as immunotherapy[i] and targeted therapy[i] .
- Advanced surgical or radiation[i] techniques.
- Developing imaging tools or blood tests (biomarkers[i]) for earlier cancer detection.
- Improved methods for managing symptoms and treatment side effects.
- Better understanding of how cancer progresses.
- Supportive care programs designed to enhance quality of life.
Prioritize Quality of Life Early
Prioritize Quality of Life Early
One of the most important lessons we learned was that palliative care is not just for the end of life, it can and should be part of your care from the beginning. Starting early with palliative support can help manage pain, side effects from treatment, emotional wellbeing, and overall quality of life.
This kind of care can include pain management, nutrition support, weight monitoring, and access to services like acupuncture, massage therapy, a cancer coach, or a dietitian. You do not have to wait until things get worse to ask for this kind of help.
We also found that tracking pain, meals, and medications helped the care team better understand what was working and where adjustments were needed. Getting the right balance can make a big difference — not just physically, but mentally and emotionally too.Let me know if you'd like a tracking tool or log sheet to pair with this section.
200+
Clinical trials tracked and reviewed
200+
Disgusting vegetable juices made with love
5
Books read on healing your cancer
15
Trips to Cincinnati for the KRAS trial
Countless
Memories made as a family
The Team Behind a Clinical Trial
Clinical trials are conducted by a team of medical professionals who work together to make sure the study runs properly and safely. The study is led by a Principal Investigator (PI), usually a doctor who specializes in cancer research, who oversees every part of the trial. The PI helps design the study and make sure it follows safety and ethical rules.
- 6+ trips to the cottage
- 6 Jays games attended
- 5 birthdays with our kids (one turning 2, 3, 4 and the other turning 5 and 6)
- 2 milestone birthdays for both of us – turning 40!
- 10 T-ball games coached, many more attended
- 4 Taekwondo belt promotion ceremonies attended for the kids
- Countless kids’ activities attended
- Countless nightly wrestling matches with the boys and weekly movie nights
- 3 concerts attended
- 3 weekends away as a couple
- 1 son’s graduationMany trips to the movies
- 10+ days on the slopes
- 3 trips to Bondi
- 3 Christmas and New Years’ and many holiday celebrations
- Seeing so many firsts for our kids
- Countless board games played
- Countless dinners with friends and family
- Countless memories made
Co-Investigators (Co-Is) are experienced doctors or researchers who work closely with the PI. They help conduct the study and provide expert guidance. Both the PI and Co-Is may also be involved in treating participants and monitoring their health throughout the trial.
Study Coordinators manage the day-to-day activities of the clinical trial. They help recruit participants, explain the study and related forms, schedule study visits and are often the main point of contact for participants. Study coordinators usually come from a variety of backgrounds, such as research nurses, clinical researchers, genetic counsellors[i], or other trained professionals, depending on the needs of the study.
Laboratory staff collect and test participant samples, such as blood, tissue[i], or other bodily fluids. These tests help the research team understand how the cancer is responding to treatment.
Data analysts look at the information (data) collected during the trial. They help researchers understand if the treatment is working, and how it compares to current treatments.
Other team members may include medical trainees, such as students, residents[i], or fellows[i], who support various parts of the study under supervision as part of their training.
Participants are the foundation of every clinical trial. Clinical research would not be possible without their help.
Ask to Connect with a Hospital Social Worker
Ask to Connect with a Hospital Social Worker
Most hospitals have a social worker on staff who can support patients and families throughout treatment, including those participating in clinical trials. Social workers can help with a wide range of practical needs, such as navigating leaves from work (for either the patient or caregiver), accessing government support programs, or managing financial paperwork related to care and travel.
Whether you are starting cancer treatment or enrolling in a trial, connecting with a social worker early can help reduce stress and ensure you are aware of the resources available to you.
Keep Track of Your Care Team
Keep Track of Your Care Team
There are many people involved in your care, especially during a clinical trial. From your primary oncologist and nurse to the research coordinator, social worker, and palliative care team, each person has a specific role. You may also have access to resources like a 24-hour oncology line for urgent concerns or symptom management.
It can be helpful to keep all of this information in one place including names, roles, contact details, and when to reach out to each person. Having a clear record makes it easier to know who to contact and helps ensure that nothing falls through the cracks when questions or issues come up.
The Building Blocks of a Clinical Trial
Clinical trials follow a series of carefully controlled steps called phases. Each phase answers specific research questions. Early phases focus on safety and dosage[i], while later phases look at how well the treatment works compared to current options. Participants generally take part in one phase of a clinical trial, not all of them.
Phase 1 trials are the first step in testing a new treatment. They usually include a small group of less than 100 participants. These trials focus on making sure the treatment is safe and finding the best dose for patients rather than how well the treatment works. They are often offered to people whose cancer is advanced and has not responded to other treatments.
Phase 2 trials assess the treatment in a slightly larger group of up to a few hundred participants. Researchers look at how well the treatment works while continuing to monitor side effects and safety.
Phase 3 trials compare the new treatment to the current standard treatment, also known as the standard of care, in a larger group of hundreds or thousands of participants. The side effects, safety and overall benefit to the participant are carefully reviewed. If successful, the treatment may be approved for general use and could become the new standard of care. In Canada, Health Canada usually requires Phase 3 results before approving a treatment.
Phase 4 trials take place after a treatment has been approved. These long-term studies help researchers understand how the treatment works in everyday life outside of a trial. They monitor long-term safety, side effects and qualify of life.
Each phase builds on the one before it, ensuring that only treatments that are both safe and promising move forward to the next stage.
How Your Health and Safety are Protected in a Clinical Trial
Participant safety is the top priority in clinical trials. All trials in Canada must follow strict rules and guidelines to ensure this safety. Before a study can begin, it must be reviewed and approved by a Research Ethics Board (REB). The REB is an independent committee made up of doctors, scientists, and other professionals whose role is to protect your rights throughout the study.
Professional Guidelines
All medical professionals and research staff involved in clinical trials are required to follow the Guidelines for Good Clinical Practice (GCP)[i] . These guidelines are designed to protect your health, privacy, and rights as a participant.
Health Canada
Health Canada is the federal government agency responsible for ensuring the safety of clinical trials in Canada. If a trial involves a new treatment that has not been previously used, Health Canada must review and approve the study before it begins. Throughout the trial, Health Canada continues to oversee the process to protect the health and safety of all participants.
Your Rights as a Clinical Trial Participant
If you decide to participate in a clinical trial, you have the right to receive all the necessary information to help you make an informed decision about joining or staying in the study. Participation is entirely voluntary and you may leave (withdraw) at any time and for any reason without affecting your regular medical care. Your privacy, confidentiality, and personal choices will always be respected and protected.
Why Participate in a Clinical Trial
There are many benefits to joining a clinical trial:
Opportunity to Try New Treatments
Clinical trials provide participants with access to new treatments that are not yet available to the public. These treatments may offer better outcomes than current options.
Access to Expert Medical Care
Clinical trial participants often receive care from specialized medical professionals and experts in the field related to the trial.
Enhanced Monitoring and Care
Participants in clinical trials often receive closer medical supervision than with standard care. This includes more frequent tests, regular check-ins with healthcare professionals, research nurses, and study coordinators, ensuring you are always supported throughout the study.
Contributing to Medical Research and Helping Others
Your participation helps researchers advance scientific knowledge, which can lead to new and improved therapies for future patients.
Research Clinical Trails
If you’re interested in clinical trials, don’t wait to start doing your research. When a standard of care drug stops working, things can change fast. At that point, you will want to know what trial type drugs have the most promise as you go along so that you can focus on those options that are the best fit for you.
This will help you be prepared and ready if/when a trial spot opens up .
How to Find Clinical Trials
- Ask your family doctor, oncologist, or healthcare team
- Use clinical trial websites
- www.ClinicalTrials.gov (International)
- www.itstartswithme.ca/getting-started (Canada only)
- https://app.emergingmed.com/lustgarten/home
- https://www.cancertrialscanada.ca/ (Canada Only)
- https://clinicaltrials.pancan.org/ (US Only)
- https://mytomorrows.com/ (International)
- Contact a cancer centre or research hospital
- Speak with a patient navigator or clinical trial coordinator
Subscribe to Drug Company Newsletters
Pharmaceutical companies often share updates on new treatments, clinical trial openings, and drug approvals. Subscribing to newsletters, especially from companies developing drugs for your specific cancer type or biomarker, can keep you informed, ahead of the curve and offer an opportunity to track developments your care team may not be aware of yet.
The Journey Through a Clinical Trial: What to Expect
Participating in a clinical trial begins with a process called informed consent. This involves a discussion between you and the study team about many aspects of the study. An informed consent form is a document that you will receive from the Study Coordinator before you agree to participate. It describes important information about the study, such as:
- Why the clinical trial is being done
- Other available treatment options
- What procedures, tests, and medications are involved
- Extra visits and time commitments
- Potential risks and benefits to participating
- How your privacy will be protected and who will have access to your information
You will have time to review the information and ask questions before deciding whether to participate. If you decide to join the trial, you will sign the informed consent form and receive a copy for your records. You can take as much time as you need to decide.
Important: Signing the consent form does not mean you must stay in the study. You can withdraw[i] at any time, for any reason. If you decide not to participate, your routine medical care will not be affected.
Screening
After you sign the consent form, the research team will check the inclusion[i] and exclusion criteria[i] to make sure you are eligible for the study. The screening process may include:
Your Rights as a Clinical Trial Participant
If you decide to participate in a clinical trial, you have the right to receive all the necessary information to help you make an informed decision about joining or staying in the study. Participation is entirely voluntary and you may leave (withdraw) at any time and for any reason without affecting your regular medical care. Your privacy, confidentiality, and personal choices will always be respected and protected.
- A review of your medical history
- Physical examinations to assess your overall health
- Lab tests (such as blood work) and other procedures needed for the study
If you meet the eligibility criteria[i], you will be officially enrolled in the study.
Connor’s Takeaway
Ask for Another Sample if You Want to Continue Testing
Getting a sample for biopsy can be really difficult with pancreatic cancer. The sample has to be big enough, etc.
Sometimes the same collected will not be enough for testing. Know that you can ask to try for another sample if you want to proceed with testing.
The Journey Through a Clinical Trial: What to Expect
Study Participation
Once enrolled, you will follow a schedule of visits, treatments and tests that are described in the informed consent form. The research team will monitor your health closely and keep you updated with any new information related to the study.
Follow Up
The research team will continue to follow up with you after the trial ends. This helps researcher understand the long-term effects of the treatment and gather more complete information about the outcomes of the study.
Sharing the Results
Either during or after the trial is complete, the overall results may be published in scientific journals or presented at conferences, always in a way that protects your identity. You can ask the research team when the results will be shared with participants. In some cases, you may receive individual results related to your own health, depending on the nature of the study.
Considering a Clinical Trial: Is it Right for Me?
Whether or not standard treatment is still an option for you, it is important to carefully weigh the potential benefits and risks of joining a clinical trial. Deciding to participate is a personal choice and may depend on many factors.
The study team is available to answer your questions before, during, and after the study. To help you feel confident in your decision, here are some important questions to consider asking your doctor or research team. Many of these topics will be explained in the informed consent document, but you may have additional (or fewer) questions. Some of these questions may not apply to the study you are interested in.
A Great way to Guide Your Own Research is to Ask Your Oncologist
“What trials or treatment pathways are you most excited about right now?”
They may highlight emerging drugs or genetic targets that are especially promising and relevant to your specific genomic or inherited profile.
Use their insight to focus your energy on areas with real potential for your case.
Before You Join: Questions to Ask
Joining a clinical trial is an important decision and one that deserves thoughtful questions. Before you enroll, it’s helpful to understand not just what the trial is testing, but how it might affect your care, your schedule, your quality of life, and your future options. Asking the right questions early on can give you clarity, set expectations, and help you and your care team decide whether a trial is the right fit for you.
Making the Most of Your Appointments
Preparing for oncology appointments in advance can make the experience less overwhelming and more productive. One helpful strategy is to write down your questions and email them to your care team at least one day before your appointment. This gives your oncologist time to review your concerns and can lead to a more focused, meaningful conversation during the visit.
Whenever possible, bring a support person to appointments, either in person or virtually. They can help to take notes, ask follow-up questions, and help ensure that nothing important is missed. This allows the patient to stay present and fully engaged.
It is also helpful to bring something to record notes, whether that is a notebook, a printed copy of your questions, or a phone or tablet. Even if you send your questions ahead of time, having a copy with you can serve as a useful reference during the discussion.
Beyond the Treatment: Costs, Travel and Reimbursement for Clinical Trials
Most clinical trial sponsors[i] cover the cost of experimental treatments, research-related tests, and additional clinic visits. Routine medical care is typically billed through provincial health coverage or private insurance. However, there may be other costs to think about. These can include travel, lodging, medications (that are not provided by the trial) and other out-of-pocket expenses.
In Canada, while insurance is not strictly required to join a clinical trial, you do need to be able to afford or receive provincial coverage for your standard care outside the trial. Some institutions in Canada accept uninsured patients, but you may need to pay up front and follow specific reimbursement policies. You should also speak with your insurance provider to clarify what, if any, costs are covered under your policy. Many hospitals and cancer centres have social workers or financial counsellors who can help you understand your options and access support.
Trial Costs can Vary — Ask Early
The cost of joining a clinical trial can vary widely depending on the medical center. Some institutions may have higher fees for consultations, imaging, or administrative setup, while others with equally strong reputations may be more cost-accessible.
- Ask about costs up front, including what's covered and what’s out-of-pocket.
- Keep receipts for potential tax reimbursements or Canadian healthcare coverage.
- Check if they put you on a waitlist before the initial consult (in person or by phone), as this varies by institution.
- Ask if the initial consult can be done by phone or telehealth to avoid unnecessary travel or fees.
- Explore lesser-known centers with strong clinical reputations, they often offer the same trials with lower associated costs.
Managing Clinical Trial Costs: Key Resources and Tips
If there are costs not covered by the clinical trial , provincial health care or private insurance, a variety of programs and resources are available to support you:Support Options May Include:
- Travel reimbursement
- Accommodation assistance
- Stipends for meals or lost wages
- It is important to speak with the research team to understand what may be available in your specific situation, especially if travel is required.
Tests that aren’t Covered by the Clinical Trial can still be done Locally
Sometimes, tests that aren’t covered by the clinical trial can still be done locally, as long as the study doesn’t require them to be done at the trial hospital. It really helps to have this conversation early with your oncologist so you know what can be arranged closer to home and what needs to happen at the study site. This can save time, travel, and costs.
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Tips for Managing Costs:
- Research options early.
- Explore multiple resources, including charitable organizations, provincial programs, financial assistance programs offered by pharmaceutical companies or hospitals.
- Keep records of receipts and documentation for all trial-related expenses for reimbursements or tax claims.
- Seek local support with patient advocacy groups, hospital social or financial workers or local nonprofits that can offer guidance or financial support.
Costs can be Overwhelming. Search for Supportive Medications Locally or Research Support Programs
Managing the costs of a clinical trial can feel overwhelming, but there are ways to make it more manageable. One helpful approach is to get supportive medications locally whenever possible, which can save both time and money.
Many hospitals running trials have patient support programs that assist with travel and accommodation expenses, even for patients coming from far away. It’s worth asking about these programs early on.
Communication between your local healthcare team and the trial doctors can also help coordinate care and avoid unnecessary expenses. Make sure to find out upfront what costs are covered by the trial and what you might need to pay out of pocket, this can vary a lot and can catch people by surprise. However, with some planning and support, travel for treatment is often quite feasible.
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National and Provincial Travel Assistance Programs
- Hope Air (nationwide): provides free flights for low-income Canadians travelling for medical care, including clinical trials.
- Northern Health Travel Grant (Ontario): Offers financial assistance to Northern Ontario residents who must travel long distances for specialized medical care. (Northern Health Travel Grant Program | ontario.ca).
- Travel Assistance Program (TAP BC): Helps alleviate transportation costs for eligible British Columbia residents traveling within the province for non-emergency medical specialist services (Travel Assistance Program (TAP BC) - Province of British Columbia).
- Craig’s Cause Financial Support for Canadians with Pancreatic Cancer (covers other programs too).
- Canadian Cancer Society: Travel Treatment Fund.
- Emergency Assistance: short term financial support if you are in a crisis or an emergency and don’t have enough money for things like food and housing: https://www.ontario.ca/page/apply-emergency-assistance.
Tax Credits and Benefits
Palliative Throughout Treatment
Benefits of palliative throughout treatment, changing the conversation about how palliative is understood (not just end of life) – why this was so beneficial, examples of different supports received (physical, mental/emotional, spiritual, etc.), e.g. cancer coach, pain management, dietician, PT.
Always Advocate for Yourself or a Loved One
Don’t be afraid to advocate for yourself or your loved one. No question or symptom should be ignored and you should not be afraid to ask questions of your care team.
If You are Eligible: What to Expect if You’ve Been Accepted in a Clinical Trial
Enrolling in a clinical trial marks the start of a new phase in your care. This stage often involves closer monitoring, more structured protocols, and increased communication between multiple care teams. Once you begin, it is important to stay organized. Keep a clear record of appointments, test results, medications, and any changes in how you feel. Clinical trials may include procedures and assessments that differ from standard care, so knowing what to expect and when can help reduce stress and avoid surprises.
Use a Shared Drive to Stay Organized
Keeping your medical records organized can make a big difference during treatment and clinical trial participation. Setting up a shared drive, such as Google Drive or Dropbox, provides one central place to store important files. This makes it easier to send documents to clinical trial teams, track your treatment progress, and keep all members of your care team updated. Having quick access to scans, test results, and appointment notes can also save time and reduce stress when decisions need to be made quickly.
Keep Key Medical Information With You
Hospital systems can sometimes be surprisingly disconnected, even within the same region. Having a copy of your current medications, medical history, allergies, and recent test results on hand can help appointments and emergency visits go more smoothly. This is especially important when you are being seen at a new hospital or by a team unfamiliar with your case.
Bringing this information with you, either printed or stored securely on your phone, can help ensure your care is safe, consistent, and well-informed.
If You are Eligible: What to Expect if You’ve Been Accepted in a Clinical Trial
Ongoing communication is essential. If you are working with both a local oncologist and a trial team at another institution, ensure they are in contact with one another, especially when coordinating labs, scans, or symptom management. Many required tests and follow-up visits can be completed locally if the protocol allows, so ask early about what flexibility may be available.
Speak Up About Side Effects
Side effects from treatment can be unexpected and may not always match what you were told to expect. Do not hesitate to bring up any changes you notice, no matter how small they may seem. Asking questions and raising concerns early can make a real difference. In many cases, there are effective ways to manage or reduce side effects, but your care team can only help if they know what you are experiencing.
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Participating in a clinical trial does not mean giving up control of your care. You have the right to ask questions, voice concerns, and make decisions at any point. Supportive care and quality of life remain central to your treatment, and any side effects or challenges should be addressed promptly. Being in a trial is not only about accessing potential new treatments; it is also about staying actively involved in your care journey.
If You are Not Eligible: Next Steps
Not everyone qualifies for every clinical trial, and finding out that you are not eligible can feel discouraging. However, there are still options available. Your doctor can help you explore:
- Other clinical trials that may be a better fit.
- Compassionate access programs for new treatments that are not yet approved or available in Canada.
- Supportive care options to enhance comfort and well-being.
Track Articles and Trial Leads Between Appointments
It can be helpful to keep a running list of any articles, resources, or clinical trials that seem relevant to your diagnosis or treatment. Whether it’s something you come across online, a trial someone mentions, or a resource shared by another patient, keeping it all in one place makes it easier to revisit and discuss with your oncologist.
This kind of list can also help you stay engaged between appointments and make the most of your time with your care team when you meet.
Key Takeaway
Discussing clinical trial options with your oncologist or healthcare team is an important part of your care. Let them know you are interested in research-based treatments and ask whether a clinical trial could be part of your treatment plan. Your oncologist may be aware of trials at your current hospital or recommend one at another centre that better matches your needs. Asking about clinical trials helps you stay actively involved in your care and ensures that all treatment options are explored.