Vittorio Petrin has never seen his grandchildren’s faces. The Italian draftsman started to lose his peripheral vision in the early 1980’s after his second son was born, forcing him to leave work and take an early pension. He was diagnosed with retinitis pigmentosa, a genetic disorder that causes the cells in the retina to break down. There is no cure. His vision steadily got worse until he couldn’t see any light at all.

Before his vision went dark, Vittorio spent six years building a model of St. Mark’s Basilica in Venice, using over 3,000 copper pieces. “It was the most beautiful place I’d seen, and I wanted to replicate it. Working on it kept my mind away from what was going to happen,” he says.

An image of Vittorio Petrin with a replica of St. Mark’s Basilica he built while losing his vision to retinitis pigmentosa.
Vittorio Petrin with a replica of St. Mark’s Basilica he built while losing his vision to retinitis pigmentosa.

“My dad was an artist. He was able to draw phenomenally, he liked taking videos. Sight was important to him,” says Vittorio’s son Dino Petrin. “He never complained about going blind, we never saw it as children. He always had a sense of humour and a strong character. He never asked for any pity, he just took it in stride.”

Millions of people in North America live with retinal diseases like retinitis pigmentosa, glaucoma, retinal ischemia and age-related macular degeneration. These diseases are poorly understood, progressive, and often untreatable.

But thanks to promising gene and cell therapies in development, Dino hopes that one day people like his father won’t have to lose their vision.

Dr. Catherine Tsilfidis' research is aimed at developing a gene therapy strategy that blocks apoptosis and slows down retinal disease progression.
Dr. Catherine Tsilfidis

“Soon we’ll be able to do what our lab has been trying to do all along – bring XIAP gene therapy into the clinic.”

– Dr. Catherine Tsilfidis

A discovery with game-changing potential

Dr. Catherine Tsilfidis can imagine the day when the first patient is treated with the retinal disease gene therapy her lab has worked on for the past 20 years. While it won’t happen tomorrow, that day is not far off.

“XIAP gene therapy is exciting because it keeps cells in the back of the eye from dying,” said Dr. Tsilfidis, a senior scientist at The Ottawa Hospital and associate professor at the University of Ottawa. “It could slow or stop vision loss caused by many different retinal diseases.”

Dr. Tsilfidis is leading a world-class team of researchers that recently received $2.4 M from the Ontario Research Fund to develop gene and cell therapies for retinal diseases. One of their goals is to do the work needed to bring XIAP gene therapy into clinical trials, which could start in the next few years.

The time is right for gene and cell therapy

The promise of replacing defective genes and cells in the eye with healthy ones is undeniable. While these fields are still in their infancy, they are expected to grow exponentially over the next decade. Gene therapy for the eyes has particularly taken off, with Health Canada approval of the first gene therapy for a rare genetic form of vision loss in 2020.

“This research program could make Ontario a leader in the fields of both gene and stem cell therapy

– Dr. Pierre Mattar

When it comes to cell therapies, Ottawa and Toronto are major hubs in the growing area of stem cell research. As partners in the retinal research program led by Dr. Tsilfidis, UHN scientist Dr. Valerie Wallace will work on increasing the survival of transplanted stem cells in the eye, while The Ottawa Hospital’s Dr. Pierre Mattar aims to develop stem cell therapies for retinal ganglion cell diseases such as glaucoma. “This research program could make Ontario a leader in the fields of both gene and stem cell therapy,” said Dr. Mattar. “By learning the best way to mass produce and integrate stem cells for retinal disease, we can advance stem cell research in other fields.”

The Ottawa Hospital's Dr. Pierre Mattar aims to develop stem cell therapies for retinal ganglion cell diseases such as glaucoma.
Dr. Pierre Mattar

Collaboration between lab researchers and clinicians key to success

The incredible challenge of bringing a basic science discovery to clinical trials requires an exceptional team. For this research program, Dr. Tsilfidis assembled a “dream team” of long-time collaborators and new partners.

As a basic scientist, Dr. Tsilfidis has always worked closely with clinicians to help ensure her research reflects patient needs.

“Ophthalmologists help us identify the most important questions to ask,” said Dr. Tsilfidis. “Our lab started working on diseases like Leber hereditary optic neuropathy and glaucoma because clinicians told us how much of a problem they were.”

Two of Dr. Tsilfidis’ long-time clinical collaborators, Drs. Stuart Coupland and Brian Leonard, are part of this new retinal research program. They are joined by retina specialists Drs. Bernard Hurley and Michael Dollin, who will assist in developing clinical trial protocols.

“Our researchers have an incredible track record of taking discoveries from the lab to the bedside,”

– Dr. Duncan Stewart

Dr. Tsilfidis’ lab and office are just down the hall from the ophthalmologists’ offices and clinics, which makes collaboration easier. This kind of co-location of scientists and clinicians has been key to The Ottawa Hospital’s success in translating discoveries from the lab bench to the patient bedside.

The highly skilled team at The Ottawa Hospital's Biotherapeutics Manufacturing Centre will make the clinical-grade virus to deliver gene therapy into the eye.
The highly skilled team at our Biotherapeutics Manufacturing Centre will make the clinical-grade virus to deliver gene therapy into the eye.

Leveraging our biomanufacturing expertise at The Ottawa Hospital

In addition to clinical experts, the team knew they needed new resources and partners to be successful.

“We’ve been very much a basic science lab in the past,” said Dr. Tsilfidis. “Now that we’re at the stage that we want to get XIAP to the clinic, we need all the help we can get.”

One missing piece was a special clinical-grade virus used to deliver the XIAP gene into the eye, known as an adeno-associated virus (AAV). Finding cost-effective sources of AAVs has been a major bottleneck for getting gene therapy trials and treatments off the ground.

Thankfully, The Ottawa Hospital is home to the Biotherapeutics Manufacturing Centre (BMC), a world-class facility that has manufactured more than a dozen different virus- and cell-based products for human clinical trials on four continents. Experts at the BMC were already starting to expand into AAV manufacturing when Dr. Tsilfidis approached them about collaborating on the retinal research program.

The BMC has since been working with Dr. Tsilfidis and her team to develop a process to manufacture the AAVs the team will need for Health Canada approval of the XIAP gene therapy for clinical trials.

The BMC is on track to become the first facility in in Canada to make clinical-grade AAV vectors for gene therapy studies. This new expertise will help them support other gene therapy trials with a focus on rare disease.

Learn more about our Biotherapeutics Manufacturing Centre.

How to plan a world-class clinical trial

In addition to the clinical-grade virus, the retinal research team needed help planning a future clinical trial of XIAP gene therapy. Fortunately, there are no shortage of clinical trial experts at The Ottawa Hospital.

“I’ve never planned a clinical trial before,” said Dr. Tsilfidis “But I knew someone who had – Dr. Dean Fergusson. I’ve always been impressed by the rigorous trails he’s helped develop. When I asked for his advice, he referred me to the Ottawa Methods Centre.”

The Ottawa Methods Centre is The Ottawa Hospital’s one-stop shop for research expertise and support. Their goal is to help all clinicians, staff and researchers at the hospital conduct the highest quality research, using the best methods. They support over 200 research projects a year, led by clinical and basic researchers alike.

“The Ottawa Methods Centre has been amazing to work with,” said Dr. Tsilfidis. “Their research methodology expertise has strengthened this research program and our funding applications.”

Drs. Manoj Lalu and Dean Fergusson along with other experts at the Ottawa Methods Centre are helping to plan a future clinical trial of gene therapy for retinal disease.
Drs. Manoj Lalu and Dean Fergusson along with other experts at the Ottawa Methods Centre are helping to plan a future clinical trial of gene therapy for retinal disease.

At the Ottawa Methods Centre, the team is leveraging the Blueprint Translational Research Group’s Excelerator program, designed to enable efficient translation of basic research discoveries to the clinic through rigorous methods and approaches. Co-led by Dr. Dean Fergusson and Dr. Manoj Lalu, the program will help design the clinical trial protocol, and support the clinical trial application to Health Canada through systematic reviews of available pre-clinical and clinical data.

Research program holds enormous promise

Tackling retinal disease will be a big challenge, but Dr. Tsilfidis has assembled an excellent team of partners both old and new to move this research program forward.

“These therapies could be life-changing. If we could cure or slow down the progression of vision loss, that would be amazing.”

– Dino Petrin

“Our researchers have an incredible track record of taking discoveries from the lab to the bedside, but it can only be done through team efforts like this one,” said Dr. Duncan Stewart, Executive Vice-President of Research at The Ottawa Hospital and professor of medicine at the University of Ottawa. “Fully leveraging our basic and clinical expertise, as well as our world-class core research resources is the key to getting new treatments to the patients who need them.”

For Dr. Tsilfidis, the excitement is palpable. “Soon we’ll be able to do what our lab has been trying to do all along – bring XIAP gene therapy into the clinic.”

Dino, a former graduate student in Dr. Tsilfidis’ lab, sees the potential of gene therapies to help people like his father. “These therapies could be life-changing,” he said, “If we could cure or slow down the progression of vision loss, that would be amazing.”

Vittorio Petrin pictured with his wife Maria Petrin
Vittorio Petrin with his wife Maria Petrin

The Ottawa Hospital is a leading academic health, research, and learning hospital proudly affiliated with the University of Ottawa.

At only 20 years old, Junie immigrated to Canada from Malaysia with ambitions to study at the University of Toronto. A new life would begin — one that would entice her family to follow her in the years ahead but would be filled with adversity.

While Junie was initially drawn to Canada for her studies, a particular experience in her early years in Toronto cemented her desire to make Canada her home. She remembers a newspaper stand on a busy street in downtown Toronto. “There was a pile of newspapers and I didn’t see anybody around. I noticed people came by, picked up a paper, and dropped some money in a bowl. It was so orderly. I couldn’t believe that people were so nice.” It was the honour system and that’s what Junie loved. “I remember thinking ‘This is a kind of society I want to live in.’”

Junie in Sydney, Australia

In subsequent years, Junie got married and her parents and three siblings followed her path to Canada. Her brother settled in Ottawa and in 1996, Junie, her sister, and their husbands decided to pay a visit to him at his new home. They had a wonderful time reconnecting.

As the two couples headed home after a week, they were involved in a head-on crash just an hour outside of Ottawa. It was a devastating collision, that left the two men dead, and the two sisters badly injured. Junie remembers waking up at the crash site and asking a police officer what happened. “He told me there was an accident and I remember seeing our two husbands slumped over in the front and then I lost consciousness.” The two sisters were rushed to The Ottawa Hospital Trauma Centre.

Eastern Ontario’s only Level 1 Trauma Centre for adults

The Ottawa Hospital is home to the only Level 1 Trauma Centre for adults in eastern Ontario — which is located at the Civic Campus. We care for the most critically injured patients from across the region, including western Quebec.

The team includes a trauma team leader, as well as an anesthesiologist, a team of emergency nurses, a group of resident physicians, and respiratory therapists — this allows them to be ready for the wide variety of complex cases that they handle, or when a Code One is called.

A Code One means a patient with significant injuries is coming to the hospital and all resources gather at the Emergency Department. This code can be called for a scenario when multiple patients are injured, like the motor vehicle collision Junie and her sister were involved in, or for instances where a single patient is injured. By contrast, a large-scale incident or any other community disaster results in a Code Orange being called.

When Junie woke up again, she was in the hospital with significant internal injuries. She learned her sister had suffered multiple fractures and was then told about the unimaginable loss — Junie’s husband and brother-in-law were gone.

“I told myself if I ever get better, I just have to give back. I was just very grateful for all the excellent care that I had received.”

– Junie 

Junie was in the Intensive Care Unit for two weeks and was heavily sedated. She remembers the compassionate care she received, having to rely on others to bathe her and wash her hair. She will never forget their kindness and sensitivity. “I told myself if I ever get better, I just have to give back. I was just very grateful for all the excellent care that I had received,” says Junie.

Clinical trial changes the practice of medicine

During Junie’s early days in the hospital, her brother Lawrence observed this compassionate care firsthand as he visited daily, supporting both of his sisters during their devastating loss. He also stayed by Junie’s side while her condition was critical — she was losing a significant amount of blood.

Junie’s brother Lawrence and his wife, Catherine

Junie had multiple blood transfusions to keep her alive and was asked to participate in a clinical trial to improve when blood transfusions should be given in critical care. Lawrence was impressed by the skilled team he observed, and he signed consent for his sister to participate in the trial, in hopes that it would help her and future patients.

“This research has saved thousands of lives and improved blood transfusions for millions of people.”

– Dr. Dean Fergusson

Not only did Junie get better but her participation in this research also helped to change the practice of transfusions worldwide. Dr. Dean Fergusson, Senior Scientist and Director of the Clinical Epidemiology Program at our hospital, explains what this means for patients. “Today, patients all around the world receive blood transfusions based on a more restrictive protocol developed at The Ottawa Hospital,” he says. “Thanks to patients like Junie, we now have a much better idea of when to transfuse, how long the blood should be stored for, and how to prevent bleeding in the first place, so patients can avoid transfusions. This research has saved thousands of lives and improved blood transfusions for millions of people.”

Filled with gratitude to this day

Today, Junie is living in Toronto with her second husband and is deeply grateful to this day for the exceptional care she and her sister received. Not long after she returned home, Junie became a monthly donor to our hospital – holding true to the promise she made while she was in the hospital that she would give back to those who cared for her.

Giving is something that her late mother instilled in her — Junie’s father died when she was very young. It helped mold the person she is today. “We were a working-class family, we weren’t rich, but we persevered. My mother was just an amazing person. She was selfless. So, my siblings and I learned from that — when you receive something good, you try to pay it back in kind, especially with deeds. I think that has a lot of influence on me,” explains Junie.

Junie visiting family

Strength is an attribute Junie also has carried on from her mother. At the age of 55, Junie was diagnosed with breast cancer. Right after her breast cancer operation, she faced an ovarian cancer diagnosis. She has seen firsthand the need for philanthropy in healthcare to provide the most advanced care. Despite everything she’s faced in life, Junie describes herself as lucky. “It’s still been a good life. It’s been 13 years since I was diagnosed with those kinds of cancers and I’m still here. I am very lucky. I’m a very lucky woman.”

“That’s why, when I die, I can leave something behind to help those who cared for me. That’s my motive.”

– Junie 

Now retired after a successful career in banking, Junie thinks to the future and how she can continue to pay it forward. That’s why she’s decided to leave a gift in her will to The Ottawa Hospital so patients will have the latest technology and most advanced treatment options to save their lives, just like she experienced. “That’s why, when I die, I can leave something behind to help those who cared for me. That’s my motive.”

Why Planned Giving is important?

By leaving a gift in your will to The Ottawa Hospital, you will be helping to shape the future of healthcare. It’s an extraordinary opportunity that you will give future generations – just imagine your legacy.

We’re here to provide you with the guidance you need to leave a gift in your will to support our hospital. This is an opportunity for you to create stronger healthcare for tomorrow, with a larger gift than perhaps you thought possible – larger than those made during your lifetime. Just imagine the legacy you will leave.

The Ottawa Hospital is a leading academic health, research, and learning hospital proudly affiliated with the University of Ottawa.

Originally published: January, 2022

When Owen Snider faced the news that his lymphoma had returned for the third time in ten years, he knew his options were running out. But a transformational new treatment known as CAR-T therapy gave him renewed hope. The Ottawa Hospital was recruiting patients for a clinical trial investigating a made-in-Canada approach to this cutting-edge treatment. He just needed to qualify for the trial.

In 2010, Owen was diagnosed with large B-cell lymphoma. In his early 60s at the time, he went through a chemotherapy treatment known as R-CHOP. For most people, it lasts 18 weeks. “It was a rigorous treatment. I got through it okay and was six years clear, but then it came back — the lymphoma returned in 2016,” says Owen.

When the cancer returned, his care team at The Ottawa Hospital vetted him for a stem cell transplant. By the summer of that year, he went through what he called an intensive program using his own stem cells. A high dose of chemotherapy was used to remove harmful immune cells in preparation for the transplant of his own healthy cells. “It’s pretty brutal, and after two or three months of wishing maybe I wasn’t around, things improved. I was clear for another four years.”

“I was given five or six months to live. My wife and I were downhearted with that news.”

— Owen Snider

Lymphoma returns for a third time

Following his stem cell transplant, Owen remained healthy for four years, enjoying retirement at his home in a beautiful, wooded area near Calabogie, where he lives with his wife, Judith Snider. But then Owen faced his biggest challenge yet when the lymphoma returned — again. This time, the diagnosis came in May 2020, in the midst of the pandemic. “I remember my oncologist saying they’ve done pretty much everything they could. I was given five or six months to live. My wife and I were downhearted with that news. I was basically going to be kept as comfortable as possible for six months,” remembers Owen.

Judith and Owen Snider kayaking.
Judith and Owen Snider kayaking.

However, one week later Owen received a lifeline. His oncologist called to say a CAR-T therapy clinical trial had opened at The Ottawa Hospital — a Canadian first. They wanted to see if he would be a good candidate. Throughout June of 2020, he went through a battery of tests and scans to see if he qualified for the trial.

“This type of immunotherapy research is groundbreaking, and it’s never been done in Canada before.”

– Dr. Natasha Kekre

By mid-June, Owen got the green light. He was a candidate for the clinical trial, and didn’t hesitate to enroll. “I either participate in the trial or I lie around here for four or five months waiting for the end. Which choice would you have made? The positive way to put it is that I was very excited to be a part of the trial. We’re the kind of people where the glass is always half-full,” explains Owen.

What is CAR-T therapy?

CAR T-cell therapy is a type of immune therapy that is an emerging biotherapeutic treatment that harnesses the power of a patient’s own immune cells, known as T-cells, to treat their cancer. T-cells play a critical role by killing abnormal cells, such as cells infected by germs or cancer cells. In some cancers, like lymphoma or leukemia, cancerous cells become invisible to the T-cells that are meant to kill them. In CAR-T therapy, the T-cells are collected and reprogrammed in the lab to recognize and destroy the cancerous cells.

Dr. Natasha Kekre is a hematologist and associate scientist at The Ottawa Hospital. She is leading the development of Canada’s first CAR-T research platform in collaboration with the BC Cancer Centre. “This type of immunotherapy research is groundbreaking, and it’s never been done in Canada before. This is a therapy that uses a patient’s own immune system. It’s personalized medicine — it’s very individualized to each patient,” explains Dr. Kekre.

The Ottawa Hospital is one of the first hospitals in Canada to participate in nationally-led CAR-T trials, and as one of Canada’s top research and treatment centres, the hospital is ideally positioned to play a lead role in bringing an innovative CAR-T research program to Canada, and to Canadian patients.

Going for the Pac-Man effect

In late June 2020, Owen went through apheresis which is the process of withdrawing the T-cells in his blood. “They put an IV in my right arm, and ran the tubing through the machine, and the machine processes the blood and pumps it back through the tubing into my other arm. I lay there on the bed for three or four hours, without moving I should add.”

“It’s just like Pac-Man, the modified T-cells ran around in my blood stream, chomping away at the lymphoma.”

– Owen Snider

Those T-cells were then sent to a lab in BC, re-programmed, and then returned to our hospital two weeks later. Then the T-cells were re-administered just like a blood transfusion. “It allows for that new immune therapy in these cells to go and find the patient’s cancer cells, attack them, and kill them. And it also stimulates the immune system in that patient to further go attack and fight their cancer,” explains Dr. Kekre.

On July 2, Owen received a PICC line and then went through three days of chemotherapy. Four days later he was re-injected with his T-cells and they got to work. “It’s just like Pac-Man, the modified T-cells ran around in my bloodstream, chomping away at the lymphoma.”

His re-programmed T-cells were specifically looking for cancer cells to kill. Owen would need to wait to find out if it was working.

Owen Snider, seen at home, was treated for lymphoma as part of a CAR-T clinical trial.
Owen Snider

Did the CAR T-cells therapy work?

One month later, Owen and Judith received some exceptional news. “At my check-up 30 days after getting my T-cells back, I was almost clear of cancer. The scan showed that there was almost nothing left. I was gobsmacked,” he says.

By the three-month mark, Owen says he was as “clean as a whistle.” Eighteen months later, there is still no sign of lymphoma.

For Dr. Kekre, giving patients like Owen new hope for the future is what inspires her. “For the first time, I think in a long time, Owen felt that the lymphoma might actually be disappearing. He’s had multiple scans since then that show the same thing. And so now, I think he’s starting to believe it. And I think that’s the reality of why I do this, because patients like him who had no options before, could soon have the option of CAR-T therapy. That’s what happened for Owen and that’s what we hope will happen for many more patients,” says Dr. Kekre.

Dr. Natasha Kekre and Owen Snider. Owen was treated for lymphoma as part of a CAR-T clinical trial at The Ottawa Hospital.
Dr. Natasha Kekre and Owen Snider. Owen was treated for lymphoma as part of a CAR-T clinical trial.

What’s next for the clinical trial?

Dr. Kekre and her team are monitoring all patients enrolled in the trial and published preliminary results in June 2022. The purpose of the clinical trial is to provide proof to Health Canada this therapy is safe. “The reality is that we have a data safety monitoring board, which watches for the safety of the trial, and they’ve had no concerns. So, from a safety point of view, we’re very happy with the trial. And that’s why we are still open and we’re still able to enroll more patients,” explains Dr. Kekre.

Why is The Ottawa Hospital unique in its CAR-T therapy?

CAR-T therapy needs to be individually manufactured for each patient using the patient’s own cells combined with large amounts of highly pure virus to deliver the chimeric antigen receptors (CAR) gene. The Ottawa Hospital’s Biotherapeutics Manufacturing Centre is ideally positioned to manufacture the clinical grade virus needed to create CAR T-cells for clinical trials. In fact, we have the only facility in Canada that has produced this kind of virus for clinical trials.

The hope is that one-day CAR T-cell therapy may also be a treatment for a variety of cancers. “The world is watching us,” explains Dr. Kekre. “We’ve had a lot of attention from Denmark, and a few other European countries are reaching out. They believe in a system similar to ours, where patients all have the right to access healthcare. If CAR T-cells are here to stay, they have to be done in a sustainable approach for our patients. And that’s a big part of what we are building — this is only the beginning. And that’s what people are looking at us to see how we do it.”

“Without philanthropy, we wouldn’t have a Biotherapeutics Manufacturing Centre or a Methods Centre at The Ottawa Hospital, and we wouldn’t be able to do innovative clinical trials like this.”

– Dr. Natasha Kekre

This made-in-Canada CAR T-cell research platform will give Canadian patients more access to innovative clinical trials. “Canadian cancer patients shouldn’t have to wait for the research to be done elsewhere but be able to participate in innovative clinical trials here at home,” says Dr. Kekre.

Grateful for each day and philanthropic support for research

Today, Owen appreciates each day and a good quality of life thanks to the clinical trial. He feels strong and can’t wait for the day when he and Judith can travel again — grateful for the lifesaving research. “It was an honour and a privilege to be chosen for the trial.”

He also credits the extraordinary care team and those special moments when he visited the hospital. “I can tell you that I always felt more than comfortable. I felt encouraged by anyone I met. The team on 5 West as we know it, is wonderful. I had an occasion to go back there last spring, and it was like walking back into Cheers — everybody knows your name.”

As a longtime supporter of The Ottawa Hospital, and to see philanthropy play an important role in making this clinical trial a reality, he’s an even bigger advocate for encouraging support for our hospital. “All I can say is that the core funding of hospitals doesn’t provide for some of the innovative and cutting-edge things that go on, or maybe some really specialized piece of equipment. And that’s where the community donor can help and contribute to that effort.”

Owen and Judith Snider. Owen was accepted into a made-in-Canada CAR-T therapy clinical trial at The Ottawa Hospital to treat his lymphoma.
Owen and Judith Snider.

For Dr. Kekre, philanthropy provides the spark for clinical trials like this, and can help to keep them moving forward. “Without philanthropy, we wouldn’t have a Biotherapeutics Manufacturing Centre or a Methods Centre at The Ottawa Hospital, and we wouldn’t be able to do innovative clinical trials like this. We need this kind of research to get to a place where all Canadians can benefit from these therapies. Without philanthropy, we would never get there.”

And to Dr. Kekre, her team, and their collective efforts to give more patients hope, Owen has a simple message: “Thank you. The whole program is outstanding.”

About the Canadian-Led Immunotherapies in Cancer (CLIC) research program

The CLIC research program, established in 2016, brings researchers, clinicians and patients from across Canada together to build Canadian expertise and capacity for innovation in the promising field of cellular immunotherapy for cancer, including CAR-T therapy. The first CLIC clinical trial launched in 2019 at The Ottawa Hospital and at BC Cancer, with support from BioCanRx, BC Cancer, The Ottawa Hospital Foundation and the Ontario Institute for Cancer Research. Core facilities and resources supporting CLIC include The Ottawa Hospital’s Biotherapeutics Manufacturing Centre, BC Cancer’s Conconi Family Immunotherapy Lab, the Ottawa Methods Centre and the Blueprint Translational Research Group. CLIC team investigators include Drs. Natasha Kekre, Harold Atkins, John Bell, Kevin Hay, Rob Holt, Brad Nelson, John Webb, Manoj Lalu, Kednapa Thavorn, Dean Fergusson, Justin Presseau and Jen Quizi.

The Ottawa Hospital is a leading academic health, research, and learning hospital proudly affiliated with the University of Ottawa.

For decades, Paula Helmer’s lovely voice carried through the alto sections of several Ottawa choirs. But even after her death following a battle with breast cancer, Paula is still managing to be heard — maybe not through song, but through science.

“That’s what Paula was hoping for from all these clinical trials,” says Jeff Christie, Paula’s husband, “that it would move medical science forward.”

“That’s what Paula was hoping for from all these clinical trials, that it would move medical science forward.”

—Jeff Christie

Jeff and Paula met in university, both studying economics at the University of Waterloo, and both moving to Ottawa, Paula’s hometown, to work for the federal government in fulfilling careers that would span decades. All the while, Paula continued her passion for choral singing, with St. Timothy’s Presbyterian Church and the Ottawa Choral Society. But Jeff says it was family life that centred everything — children, grandchildren, travel, and the family cottage.

Paula (back row, fourth from right) in 2005 with members of the Ottawa Choral Society.

“Five years into retired life, it was discovered that Paula had cancer,” Jeff recalls.

It was a deadly form of breast cancer that had metastasized in her spine and was causing her considerable discomfort. Surgery removed the tumour but couldn’t eradicate the cancer, nor control the pain. That’s when Paula was introduced to Dr. Mark Clemons, a medical oncologist with The Ottawa Hospital.

“We came up with a multipronged plan to not only improve (Paula’s) pain,” Dr. Clemons explains, “but to get her disease back under control.”

“It was patently clear from the first meeting,” says Jeff, “that Dr. Clemons was very capable, competent, and wise. He gained our confidence the first time we met and the treatments he was suggesting for her, they were always so successful. How could you not love the guy?”

A passion to participate in clinical trials

Dr. Clemons is also the lead behind The Ottawa Hospital’s REaCT Program or Rethinking Clinical Trials, launched in 2014 with Dr. Dean Fergusson, senior scientist and Director of Clinical Epidemiology Program, and others. The aim of REaCT is to make enrollment in clinical trials easier, by involving cancer patients and their families every step of the way. Typically, only 3% of patients are involved in trials but with REaCT, that number is closer to 90% since the studies don’t involve extra visits or additional tests. Paula began participating in a series of clinical trials aimed at helping her, but also aimed at improving treatment options for future generations. Jeff says that was her driving ambition.

“Paula played an important role in advancing the treatment of patients across the world.”

— Dr. Mark Clemons

“It was really important to her, to both of us,” he says. “There are more treatments out there we haven’t found yet and we are going to find them through clinical trials. If you don’t participate, nobody gets the new treatments.”

Empowered and making an impact

More importantly, Jeff says, Paula’s participation in these clinical trials gave her a voice and made her an active participant in her treatment.

“Paula was always left with the impression that she was in the driver’s seat right beside Dr. Clemons. They listened to her, believed her.”

Dr. Clemons explains that one of the many clinical trials Paula participated in involved looking at how often bone agents should be given for patients with metastatic breast cancer. Traditionally, the treatment is delivered as an injection every four weeks, requiring patients to come to the hospital and spend prolonged periods away from home.

“Paula had a driving ambition to not only improve her own prognosis but also help with the knowledge being gained for future patients.”

— Dr. Mark Clemons

“Because of Paula and many other patients involved,” says Dr. Clemons, “we were able to do a trial that showed that an injection every 12 weeks was just as effective and was associated with fewer side effects.” It also added to Paula’s quality of life, allowing the couple to continue to visit the cottage and travel in between those 12-week injections.

“That was a great thing,” says Jeff. “The care we got was supportive of our lifestyle. It allowed us to travel as we had hoped to.”

Paula’s legacy lives on

Sadly, Paula lost her fight against cancer on February 18, 2021. But Jeff is continuing her work, spreading the word about REaCT among friends and colleagues, raising funds to support this critical work that is helping to shape better treatment options for cancer patients around the world.

“I’ve spoken about REaCT in my social circles,” Jeff explains. “I mentioned Paula has participated in at least dozens of clinical trials and benefited from them.”

“It’s fantastic that Jeff is continuing Paula’s legacy,” says Dr. Clemons. “Paula played an important role in advancing the treatment of patients across the world.”

It’s a role that she embraced with the same fervor she approached everything she did in life, whether as an economist, a wife, a mother, and yes, even a singer.

“There are more treatments out there we haven’t found yet and they are going to find them through clinical trials.”

— Jeff Christie

The Ottawa Hospital is a leading academic health, research, and learning hospital proudly affiliated with the University of Ottawa.

The study that is changing breast cancer treatment around the world

There is such deep love in Gina Mertikas-Lavictoire’s eyes when she looks at her three young children. But there is something else, too: fear. Fear that one or even both of her daughters will develop the same aggressive breast cancer she’s had. So, when an opportunity arose to participate in a clinical trial through The Ottawa Hospital’s REthinking Clinical Trials (REaCT) program, she readily agreed.

Gina Mertikas, centre, and her family
Gina and family

“I’m really big on clinical trials,” says Gina, “so I had no hesitation helping…and I trusted Dr. Clemons.”

Dr. Mark Clemons, scientist and oncologist at The Ottawa Hospital, was Gina’s medical oncologist and also the one who launched REaCT in 2014, together with Dr. Dean Fergusson, senior scientist and Director of The Ottawa Hospital’s Clinical Epidemiology Program, and others. The purpose of REaCT was to make enrollment in clinical trials easier for cancer patients. The more patients who enroll, the more that can be learned, which leads to better treatments and practices.

“When you think the most common killer is now cancer,” says Dr. Clemons, “and only 3% of patients are involved in trials, it’s quite shocking. Patients are desperate to help, not just for themselves but for their children. They want their children to have better treatments if this happens to them.”

Study focused on safer care, less cost, fewer hospital visits

Gina participated in a study focused on a drug called filgrastim, which boosts the production of infection-fighting white blood cells. People with early-stage breast cancer often receive daily injections of the drug at the start of every cycle of chemotherapy, anywhere from five doses to seven to 10. Many cancer patients struggle with both the cost of the drugs, at more than $200 per injection, and the side effects.

“This is an incredibly expensive drug,” says Dr. Clemons, “but often patients feel horrible with it. It makes you feel miserable.”

Up to this point, there had been conflicting debate on how many injections worked best. So, after reviewing all the evidence and surveying doctors and patients, Dr. Clemons and his colleagues launched a clinical trial to find out, enrolling 466 patients from seven Canadian cancer centres.

Gina was among those patients, giving herself a daily shot of filgrastim 10 days in a row after each of her three rounds of chemotherapy.

Gina presenting a cheque to Dr. Clemons in support of the REaCT program at The Ottawa Hospital

“I’m so thankful I was part of this trial”

Gina says she had no hesitation volunteering to be part of this trial, “because I’m able to help future breast cancer patients,” adding, “We are helping the future generation with every trial we do, so I’m happy they asked me.”

She’s happy, too, with the results of the study, published in Annals of Oncology, which have helped change care globally. Researchers discovered that five doses of filgrastim are just as good as seven to 10 doses in terms of preventing infections. And when they looked at treatment-related hospitalizations, they found that five doses are better: patients who received five doses had a 3.3 percent chance of hospitalization for side-effects compared to 10.9 percent for people who had seven to 10 doses, a difference of more than three-fold.

“I believe this is how we will find the cure for cancer.”

– Gina Mertikas-Lavictoire

Results change global standard of care

Drs Mark Clemons and Dean Fergusson developed the Rethinking Clinical Trials or REaCT program
Drs. Mark Clemons and Dean Fergusson developed the Rethinking Clinical Trials or REaCT program

“This study is already changing practice around the world,” says Dr. Clemons. “It is making our patients healthier and giving them more time with loved ones by reducing unnecessary hospital visits. It is also saving our healthcare system millions of dollars every year.”

“This study is already changing practice around the world. It is making our patients healthier and giving them more time with loved ones.”

– Dr. Mark Clemons

The REaCT team wants to take this research one step further to find out whether even fewer doses can be prescribed. They have just applied for funding to start that study and are focused on several other clinical trials as well. With more than 2,700 patients participating in 17 trials in 15 centres across Canada, REaCT is now the largest cancer clinical trials program of its kind in the country.

“By thinking differently and using innovative approaches, we are efficiently answering some of the most important questions for patients and for our healthcare system,” says Dr. Fergusson. “The Ottawa Hospital is a leader in this kind of innovative research and our patients are among the first to benefit.”

Gina knows that well. She’s participated in two other clinical trials through REaCT and has become an ardent fundraiser, securing more than $25,000 for cancer research at The Ottawa Hospital.

“I believe this is how we will find the cure for cancer,” she says, “so we really need to continue to support this avenue, to support the next generation of cancer patients.”

“The Ottawa Hospital is a leader in this kind of innovative research and our patients are among the first to benefit.”

— Dr. Dean Fergusson

The Ottawa Hospital is a leading academic health, research, and learning hospital proudly affiliated with the University of Ottawa.

REthinking Clinical Trials (REaCT) is a unique research program aimed at improving the lives of people with cancer through patient-centred, pragmatic clinical trials.

Based at The Ottawa Hospital, the REaCT program engages patients and their loved ones in research every step of the way, from generating ideas to setting priorities to designing studies and sharing results.

Unlike most cancer clinical trials, which are focused on evaluating experimental treatments in a very narrow patient population, REaCT trials compare standard approved treatments in a real-world setting with a broad range of patients. In this way, REaCT trials can efficiently answer some of the most important questions for cancer patients and the health care system.

REaCT is the largest pragmatic cancer clinical trials program in Canada, with more than 2,700 patients participating in 17 clinical trials at 15 centres in Canada.

Gina Mertikas-Lavictoire grateful for her care at The Ottawa Hospital

“We are helping the future generation with every trial we do. I’m so thankful I was part of this trial.”

— Gina Mertikas-Lavictoire, REaCT trial participant

“Being diagnosed is pretty lifechanging. You feel for other women who are going through this, and so I wanted to give back for the care I was receiving to help other women. I was open to any treatment that was new and innovative. The REaCT trial procedures were straightforward and easy to understand.”

— Connie Chartrand, breast cancer patient, participated in three REaCT clinical trials

Surgeon-scientist Dr. Rebecca Auer is leading a world-first clinical trial that she hopes will protect cancer patients from COVID-19 and other respiratory infections by boosting their immune systems during treatment. The trial was funded in part thanks to donor support to the COVID-19 Emergency Response Fund.

“A cancer diagnosis is scary at the best of times, but the pandemic has made it even worse,” said Dr. Auer, surgical oncologist and Director of Cancer Research at The Ottawa Hospital and associate professor at the University of Ottawa. “Cancer patients have weakened immune systems, which makes them more likely to get severely ill from COVID-19.”

At best, a severe infection could delay a patient’s cancer treatment. At worst, it could kill them.

Patients receiving cancer treatments are the most at risk because the treatments further weaken their immune system. This at-risk population is quite large – over 90,000 people received radiotherapy or chemotherapy treatments in Ontario alone in 2019.

“While there are many specific vaccines for COVID-19 in the works, they won’t be available for at least a year. Cancer patients need protection now.” – Dr. Rebecca Auer

Boosting the immune system during treatment

Dr. Auer and her team at The Ottawa Hospital came up with the idea of testing whether boosting cancer patients’ immune systems during their treatment could help prevent COVID-19 and other respiratory infections. In collaboration with scientists at the Ontario Institute of Cancer Research, they explored an immune-stimulator called IMM-101. Then she worked with Canadian Cancer Trials Group at Queen’s University to design and run the clinical trial at nine cancer centres across Canada.

The researchers will recruit 1,500 patients currently receiving cancer treatment to this clinical trial. Patients will be randomly assigned to receive either regular care, or regular care plus IMM-101. This preparation of harmless heat-killed bacteria had been developed as an anti-cancer therapy because it stimulates the immune system. It has already been safely given to 300 advanced cancer patients in earlier trials.

Training the innate immune system

Dr. Rebecca Auer speaks with a colleague
Dr. Rebecca Auer speaks with a colleague (Photo taken before COVID-19)

This trial takes advantage of a lesser-known aspect of the immune system — innate immunity. This first-response arm of the immune system plays a key role in detecting viruses.

Innate immune cells recognize features that are common to many viruses, allowing them to attack viruses the body has never seen before. This is different from the adaptive immune system, which only recognizes viruses the body has already encountered through prior infection or through a vaccine.

The research team hopes that because the IMM-101 treatment can train the patient’s innate immune system, it will help to fight off the COVID-19 virus, in addition to other viruses that cause respiratory infections.

“There is good data to suggest that the reason some people have no symptoms from COVID-19 while others get very sick is their innate immune system’s ability to respond early and quickly to the virus. This made us consider whether we could use an innate immune booster to prevent COVID-19 infections.” – Dr. Rebecca Auer

Based on data from other immune stimulators, it’s likely that this immune-boost would be temporary. But researchers hope it will last long enough to get a patient through their cancer treatments. Once the treatments have ended, the patient’s immune system would return to its regular strength and be strong enough to fight off viruses on its own.

Protection from more than COVID-19

The advantage of this immune-boosting approach is that it could help cancer patients fight off all sorts of viruses while they are undergoing cancer treatments and are at their most vulnerable.

“The treatment we’re using trains the immune system to do a better job fighting the next viral infection,” said Dr. Auer. “It’s not specific to COVID-19, but actually applies to any viral respiratory illness.”

If successful, IMM-101 could also offer benefits to people with other chronic illnesses or compromised immune systems who are similarly at a heightened risk of serious outcomes from COVID-19. It could also help protect people with cancer from other respiratory infections like the seasonal flu.

Preparing for future pandemics

“In 20 years, we’ve had three coronavirus epidemics or pandemics –SARS, MERS and COVID-19—so it’s likely that we’ll see another,” said Dr. Auer.

“We think harnessing innate immunity could be one of our best weapons for fighting COVID-19 and could be easily adapted to tackle future pandemics.” – Dr. Rebecca Auer

Donate today to support promising research and clinical trials like this one.

Cancer patients undergoing active treatment who are interested in participating in this trial should speak with their cancer specialist.

The Ottawa Hospital Foundation provided seed funding for this project through the COVID-19 Emergency Response Fund, funded by generous donors in the community. Read about other projects that have received funding thanks to donor support and are making a difference in the fight against COVID-19.

Additional funding and in-kind support for this trial have been provided by the Canadian Cancer Society, BioCanRx, the Ontario Institute for Cancer Research, The Ottawa Hospital Academic Medical Organization, ATGen NK Max Canada, and Immodulon Therapeutics, the manufacturer of IMM-101.

The Ottawa Hospital is a leading academic health, research, and learning hospital proudly affiliated with the University of Ottawa.

Exceptional care makes young mother want to give back

When Gina Mertikas-Lavictoire received the good news that she had gone from breast cancer patient to cancer survivor, she knew she wasn’t done with The Ottawa Hospital.

Eternally grateful for the care she received, Gina knew she wanted to give back — she felt that she needed to.

“After my treatment was done, I asked my oncologist, Dr. Mark Clemons — who’s one of the best doctors in the world — ‘how can I give back?’ I need to do something to give back.” – Gina Mertikas-Lavictoire

Gina was 34 years old with three young children at home, the youngest just 12 months old, when she felt something was wrong — there was an unusual firmness in one of her breasts. A breast cancer diagnosis followed and rocked her family’s world. She immediately went into survival mode. “The first thing I asked my doctor was when can I have a mastectomy and when can I start my treatment. I never looked back,” Gina says.

Despite the alarming health news, she faced the disease with sheer determination. “I received excellent care at The Breast Health Centre at The Ottawa Hospital. I went through chemotherapy and radiation. I’ve had four surgeries including a hysterectomy and a double mastectomy.”

An unimaginable experience for a young mother, but the gratitude Gina has for The Ottawa Hospital is undeniable in her desire to give back.

Paying it forward

Gina Mertikas and Katerina Mertikas
Gina and her mother, Katerina Mertikas, a renowned local artist

“When I received the news that I would be able to watch my children grow up, that’s when I put the wheels in motion to help others,” recalls Gina. She came up with the idea of selling a calendar to support cancer research at The Ottawa Hospital.

Today, she’s feeling great and is solely focused on her fundraising efforts, which have exceeded her wildest expectations.

“From the get go, the calendars kept selling out. They were just flying off the shelves. What I’m surprised by is the amount of support that I had, not only friends and family but from all of Ottawa and across the country. People are supportive. We’ve even shipped calendars into the United States,” says Gina.

Gina hasn’t done any of this alone. Right alongside her during her diagnosis, treatment, and now the furious fundraising efforts is her family, including her mother Katerina Mertikas. Katerina is a local artist, who is renowned across the country for her beautiful paintings. It’s Katerina’s art, which is featured each month in the calendar.

Research is transforming care

For Katerina, it was extraordinarily difficult to watch her daughter go through the treatment and surgeries. “There are no words,” says Katerina.

However, the mother of two knows cancer research played a role in helping her youngest daughter recover. “My own daughter has benefitted from research through the treatment she received, which was Herceptin — a chemotherapy drug. It was originally used in a clinical trial before becoming a standard of care for patients,” acknowledges Katerina. It’s for that reason this mother-daughter duo is working together to help others facing the disease.

With calendars from 2019 and 2020 under her belt, and $25,000 raised for cancer research, Gina wants to see this continue for years to come with the help of her own children. Her eldest daughter, Katerina, has been introduced to philanthropy and what it means to give back. For Gina, she’d love to one day hand off the calendar project to the next generation. “I’m hoping someday my kids will take over this calendar and it will continue on,” says the proud mother.

Excellence in care

For this family, there is undeniable gratitude toward the care team at The Ottawa Hospital, which helped Gina when her life depended on it. The impact has been profound on the family and for Katerina, especially from one doctor in particular — Dr. Mark Clemons, medical oncologist and associate scientist at The Ottawa Hospital Cancer Centre.

Dr. Clemons first joined The Ottawa Hospital in 2009 and has made a remarkable name for himself since, both among patients and colleagues alike. At the time, he was unsatisfied with the way breast cancer was being monitored and treated in Canada, so this quickly became his primary area of specialty for clinical trials.

In fact, in 2014, along with Dr. Dean Fergusson, Director of the Clinical Epidemiology Program, Dr. Clemons developed the Rethinking Clinical Trials or REaCT program as a way to make the process of enrolling in clinical trials easier and more efficient for cancer patients. As of June 2020, this groundbreaking program had enrolled over 2,600 patients, making it the largest pragmatic cancer trials program in Canada. In recognition of their success, the REaCT team recently earned a 2020 Research Excellence Team Award from The Ottawa Hospital. Dr. Clemons was also the recipient of the Chrétien Researcher of the Year Award in 2013.

For Gina, she is grateful to have been cared for by such an accomplished researcher who also happens to be a compassionate physician. Dr. Clemons offered guidance, encouragement and hope when she needed it most, and this inspired her to give back.

“Dr. Mark Clemons is a very special doctor,” says Katerina. “He made us feel so comfortable. He helped a lot with his attitude. He gave it his all — so how could we not give back? I wish we could give more.” – Gina Mertikas-Lavictoire

Listen to Pulse Podcast, and hear Gina’s story, including a special guest appearance by Dr. Mark Clemons.

The Ottawa Hospital is a leading academic health, research, and learning hospital proudly affiliated with the University of Ottawa.

A race against the clock

Karen Lawrence is no stranger to helping those in need. After all, she’s a Clinical Manager of Oncology at The Ottawa Hospital. Her position, largely characterized as providing specialized treatment and care to some of the hospital’s most ailing, has taught her the value of advocating for those in need and raising money for critical research.

Now, sitting with the knowledge that her own body will soon start to deteriorate, she reflects on her life – and the future of her three boys.

An uncertain future

On January 27, 2014, Karen received the results of a genetic test, confirming one of her biggest fears. She is a carrier of a gene that causes amyotrophic lateral sclerosis (ALS) – a rare disease that gradually paralyses people because their motor neurons, which send signals from the brain to the muscles, break down and die.

As she sits staring at an oversized clock mounted on her living room wall, it seems to take on more significance – each second that passes moves Karen toward her inevitable fate. Like so many family members before her, Karen will too develop the disease. It’s just a matter of time.

“My family has been stricken with the familial form of ALS,” she explains with a pained expression. “I have lost 14 members of my family to this devastating disease, including my father.”

Watching ALS render her father helpless, while keeping his mind intact, was a cruel reminder that today there is no fighting this disease. “There is little hope yet. Today, there is only pain and suffering. Facing an uncertain future, a cure can’t come soon enough,” says Karen.

Karen Lawrence sitting at the kitchen table in her home.
Results of a genetic test showed Karen Lawrence carries a gene that causes ALS.

Family ties

No one in Karen’s family realized it at the time. Several members of her extended family were diagnosed with ALS and passed before they connected the dots. It was only once her grandfather, uncle and father were diagnosed that the family started to talk about the fact that it was likely genetic. The women in her family, her aunt and cousins, were diagnosed in their 40’s. The men were diagnosed when they were a little older, but under the age of 60. Once diagnosed, most only survived 12-18 months.

With a 50/50 chance of having the gene, it was never far from Karen’s mind. “It’s like walking around with a target on your back. You’re just kind of waiting,” she said. And she was tired of it – the waiting. That’s when she got tested.

“It’s like walking around with a target on your back.” – Karen Lawrence

“When they told me I had the gene, I was very composed and held it together until I thought of my kids and then I started to cry. That’s when it really hit me. I potentially gave a terminal illness to my children. So that’s very difficult to live with.”

The race is on

When Karen found out that she had the gene, something as simple as dropping a pen, or a small stumble, would have her mind racing to the future.

Karen is aware that it’s just a matter of time before her brain will no longer be able to talk to her muscles. Eventually, she’ll have trouble with her balance, then she won’t be able to walk, then talk and then eat. But her mind will be intact, trapped within her body, while she waits for ALS to take her ability to breathe. Karen has a pretty clear idea of what this will look and feel like, having watched her father go through it just a few years ago.

So, how does she grapple with the thought of such a grim future? She runs – literally. And she raises a substantial amount of money in support of neuromuscular research and care while she’s at it.

Her first ever marathon was in Copenhagen and her second in New York City. More recently, she has participated in The Ottawa Hospital’s Run for a Reason, where alongside her team, she raised funds towards a brand-new Neuromuscular Centre right here in Ottawa.

“The race is on to fund research to find a cure, or to prevent onset before my three beautiful boys are faced with the same agonizing decision of whether to get tested.” – Karen Lawrence

A new Neuromuscular Centre

Thousands of people in eastern Ontario are affected by neuromuscular diseases. Until recently, patients had to travel to Montreal or Toronto to participate in clinical trials to help further research in these diseases. However, Dr. Jodi Warman Chardon noted that The Ottawa Hospital had more than 50 researchers and clinicians working on behalf of people like Karen. Each is working on various aspects of neuromuscular disease – from clinical care to lab research. There was no reason why the most promising clinical trials couldn’t be offered here in Ottawa.

Dr. Warman teamed up with Senior Scientist Dr. Robin Parks, who is conducting lab-based research on neuromuscular diseases. Their dream to have a centre that would bring these experts together in one place caught traction, and in May 2018, The Ottawa Hospital Neuromuscular Centre opened its doors to patients. “What’s exciting is it’s more than just a clinic. It’s a clinical research centre,” said Dr. Robin Parks. “So the idea is to do research and get results that will then feed back to the patient to provide insight into new therapies for them.”

Today, Ottawa is at the global epicenter of neuromuscular research. Equipped with the strongest neuroscience research team in the world, we are well positioned to discover new treatment options and cures, which will change patient outcomes worldwide.

“When a cure is found for this disease [ALS], the chances are it will be found in Ottawa,” said Duncan Stewart, Executive Vice President, Research, The Ottawa Hospital.

Zest for life

Karen does not yet have ALS, so she is not undergoing any treatment. But she remains hopeful that when she develops the disease, she will participate in the Neuromuscular Centre’s clinical trials and benefit from treatment developed at The Ottawa Hospital.

Until then, she tries to not dwell on what lies ahead and instead focuses on her hope for a healthy future for her boys.

The Ottawa Hospital is a leading academic health, research, and learning hospital proudly affiliated with the University of Ottawa.

Hope despite aggressive skin cancer diagnosis

Diagnosed with a stage 4 melanoma at the age of 62, Dan Collins feared for his life when he learned about the aggressive form of cancer. However, immunotherapy treatment gave him a reason to hold out hope. Dan had hope because of scientists who never gave up; who were determined to turn the tables on cancer and to create a better chance of survival, for patients like him. Hope that a cure is coming.

Discovery of a mass

Four years ago, Dan had been travelling for work, when he started noticing some pain when he’d lean his head back to rest on the plane. He recalls turning to his family doctor to get answers. An ultrasound revealed there was something inside the back of his head that looked like a cyst.

After an initial biopsy, Dan was referred to a surgeon at The Ottawa Hospital Cancer Centre. Another biopsy revealed the cyst was actually a mass. It was melanoma. “I was scared. Cancer had stripped my family of so much. I lost both of my two older brothers and my father to cancer. I feared for my life,” recalls Dan.

Unfortunately, the mass starting growing – and it was growing fast. By the end of July, just two months later, the mass went from being not visible on the back of his head, to the size of a golf ball.

His surgical oncologist, Dr. Stephanie Obaseki-Johnson, initially wanted to shrink the tumour before surgery to remove it. However, the mass was growing too quickly.

Oncologist Dr. Michael Ong of The Ottawa Hospital in a patient room.
Dan Collins with Oncologist Dr. Michael Ong.

Time to act

On August 11, 2015, Dan had surgery that lasted most of the day. When it was over, he had 25 staples and 38 stitches in the back of his head. As he recovered, Dan was reminded of a saying that helped him through recovery, “Never be ashamed of your scars. It just means you were stronger than whatever tried to hurt you.”

He would need that strength with the news that awaited him. Only two weeks later, the mass was back. His doctors also discovered a mass in his right lung and shadows in the lining of his belly. He had stage 4 cancer – it had metastasized. This was an aggressive cancer that left Dan thinking about the family he had already lost and what would happen to him.

The next generation of treatment

Soon, he was introduced to The Ottawa Hospital’s Dr. Michael Ong and was told about immunotherapy – the next generation of treatment, with the hope of one day eliminating traditional and sometimes harsh treatment like chemotherapy. Dr. Ong prescribed four high doses of immunotherapy. At the same time, radiation treatment began for Dan – 22 in all. His immunotherapy treatments were three weeks apart at the Cancer Centre and between each, he would have an x-ray to monitor the tumours.

“Each x-ray showed the tumours were getting smaller. That’s when the fear started shifting to hope.” – Dan Collins, patient

By December 2015, Dan finished immunotherapy treatment and the next step was to wait. “This transformational treatment was designed to train my own immune system to attack the cancer. We would have to be patient to see if my system would do just that,” says Dan.

While the shadows in Dan’s stomach lining had shrunk, the mass in his lung had not. That’s when Dr. Ong prescribed another immunotherapy drug that would require 24 treatments.

Dan learned from his oncologist that melanoma has gone from being an extremely lethal cancer, with few treatment options, to having many different effective therapies available.

“When I started as an oncologist a decade ago, melanoma was essentially untreatable. Only 25 percent would survive a year. Yet now, we can expect over three quarters of patients to be alive at one year. Many patients are cured of their metastatic cancer and come off treatment. We are now able to prevent 50 percent of high-risk melanoma from returning because of advances in immunotherapy,” says Dr. Ong.

Dan completed his last immunotherapy treatments in September 2017.

Oncologist Dr. Michael Ong posing with armed crossed at The Ottawa Hospital.
Oncologist Dr. Michael Ong of The Ottawa Hospital.

Today, there is no sign of cancer

When Dan thinks back to the day of his diagnosis, he remembers wondering if he was going to die. “I believe I’m here today because of research and because of those who have donated to research before me.”

He thinks back to when his older brother Rick died of cancer in 2007. “At the time he was treated, his doctor asked if he would participate in a research study. The doctor told him directly, this would not help him, but it would help somebody in the future.” Dan pauses to reflect and then continues, “I like to think, that maybe, he had a hand in helping me out today. Maybe he helped me survive. One thing I do know is that research was a game changer for me.”

The Ottawa Hospital has been a leader in bringing immunotherapy to patients. Research and life-changing treatments available at The Ottawa Hospital altered Dan’s outcome and he hopes that advancements will continue to have an impact on many more patients, not only here at home but right around the world.

The Ottawa Hospital is a leading academic health, research, and learning hospital proudly affiliated with the University of Ottawa.