New approach to treating brain tumours changed young patient's life
After nearly a decade of mini seizures, Stefanie Scrivens was diagnosed with grade 2 oligodendroglioma at only 20 years old. She would be one of the first to benefit from a new treatment option to increase her chance of survival, including two complex, 8-hour awake surgeries at The Ottawa Hospital to remove the rare tumour from her brain.
Stefanie Scrivens vividly remembers the first time she experienced a mini-seizure, though she didn’t know what it was at the time. She was only 13 years old, but her symptoms continued undiagnosed for nearly a decade, until a CT scan revealed Stefanie had a brain tumour that would become cancerous if untreated. Her best chance of survival was undergoing two 8-hour awake brain surgeries, performed by neurosurgeon Dr. John Sinclair, and a highly skilled team of experts at our hospital.
Stefanie was in elementary school, walking to class, when she noticed a metallic smell and taste in her mouth, followed by blurred vision. These strange symptoms only lasted a few moments, but afterwards she was disoriented, confused, and struck with a severe headache. “I’m just tired,” Stefanie thought, and went on with her day as if nothing happened. But these symptoms continued, up to 20 times a day, for a week straight, every six weeks — a frightening experience for anyone, let alone a teenager.
Stefanie’s parents were concerned and brought her to her family doctor. “I was told they were growing pains. That I was just going through puberty. I thought what I was going through was normal,” said Stefanie. But as her symptoms progressed year after year, she would eventually discover it was anything but normal.
“Dr. Seale didn’t just chalk it up to anxiety or say that I would grow out of it. He was willing and ready to help me figure out what was going on.” – Stefanie Scrivens
A twist of fate
When Stefanie was 20 years old, new symptoms developed. That’s when she decided to pay a visit to the Emergency Department (ED). She needed to get to the bottom of the symptoms she had experienced for nearly half of her life. This is where she met Dr. Edward Seale, who was one of the attending physicians at the ED.
It was a twist of fate that Stefanie landed in Dr. Seale’s examination room that day. Dr. Seale immediately recognized her symptoms as mini-seizures. “As someone who has epilepsy myself, seizures and the symptoms one may experience while having one, were top of mind for me,” said Dr. Seale. “Although each physician here would have treated her the same way, seizures are a part of my life, so I could relate to what she was going through.”
Stefanie was relieved to finally feel heard. “It felt like for the first time in my life, someone actually understood what I was going through,” said Stefanie. “Dr. Seale didn’t just chalk it up to anxiety or say that I would grow out of it. He was willing and ready to help me figure out what was going on.”
Due to the repetitive nature of her symptoms, Dr. Seale thought she may have epilepsy and ordered her a CT scan to investigate further. But the results from her scan turned out to be far worse than Stefanie could have imagined.
A shocking diagnosis
When Stefanie’s results came in, Dr. Lucian Sitwell, a Neurologist at The Ottawa Hospital broke the news. The cause of her mini-seizures was a grade 2 oligodendroglioma, which is a type of slow-growing brain tumour that becomes cancerous. “Until that moment, the thought had never crossed my mind that it could be a brain tumour,” said Stefanie. As she sat there shocked and scared, she cried. At only 20 years old, this news was devastating.
But a few moments later, she made a crucial decision. Stefanie decided to stay strong, positive, and do whatever it took to fight for her life. “I was of course upset, but I thought to myself ‘I have a choice right now. I can either be angry this is happening to me, or, I can try to make the most of it.’ And I decided, worse comes to worse, if I don’t make it, I don’t want to leave this life with a negative mindset.”
After absorbing the difficult news of her diagnosis and learning what her treatment options were, Stefanie, armed with her “ready to tackle anything” attitude, decided to move forward with treatment, which would include a complex, 8-hour awake brain surgery.
An innovative treatment plan
Stefanie was referred to Dr. John Sinclair, a world-class Neurosurgeon at The Ottawa Hospital, who would be in charge of her treatment plan and surgery to remove the tumour. Dr. Sinclair has been at the forefront of bringing new and innovative treatment options and technology to The Ottawa Hospital, such as the CyberKnife, Advanced Awake brain tumour surgery, and most recently Fluorescence Guided Surgery. This has brought new hope to patients with unique brain tumours, like Stefanie.
“I felt that I could trust putting my life in his hands.” – Stefanie Scrivens
“Stefanie’s case was rare,” said Dr. Sinclair. “It isn’t very often that you see healthy, young individuals, like Stefanie, with a diagnosis like this.” Fortunately, global advances in cancer research at the time indicated a new treatment plan for tumours such as oligodendroglioma was showing promising results. And Stefanie was a good candidate for this new treatment. “Over a decade ago this wasn’t common practice. We would have monitored the tumour and once it started to change we would recommend surgery then radiation and chemotherapy as a form of treatment,” explained Dr. Sinclair. “Now, we’re seeing a significant increase in life span and survival rates, in cases such as Stefanie’s, when we surgically remove the tumour as soon as it’s detected. No longer are we using radiation and chemotherapy as a primary treatment method for this type of tumour.”
After meeting Dr. Sinclair, Stefanie had full confidence in her healthcare team “Going under the knife is really nerve racking. But not only did I hear how great Dr. Sinclair was as a neurosurgeon, I realized after meeting him how great he is as a person, too,” said Stefanie. “He took the time to get to know me and develop a good relationship with my family and me. I felt that I could trust putting my life in his hands.”
Stefanie was fortunate to benefit from having the tumour surgically removed before it turned malignant. And after a successful complex 8-hour awake brain surgery, she was back home recovering just three days later.
Awake brain surgery and brain mapping
Awake brain surgery, used to treat some brain tumours such as Stefanie’s oligodendroglioma, is a type of procedure performed while a patient is alert and communicating normally while in the operating room. Brain tumours are often dangerously close to regions in the brain that control vision, speech, cognition, personality, and movement. By keeping a patient awake during surgery, they can monitor a patient’s brain activity throughout the procedure to ensure they aren’t negatively impacting these important functions. “Tumours are often woven with functional tissue,” explained Dr. Sinclair. “In the last five years we’ve been able to use more advanced brain mapping techniques so that we can more accurately remove the tumour without hurting the patient.”
Subcortical mapping is a very new technique used in brain mapping surgery — and our experts are some of the first to use it and are leading the way in training others. As an expert in the field, Dr. Sinclair and his team have offered courses to physicians from across the country so that they too can make use of this revolutionary technique that is changing the lives of patients, just like Stefanie.
Back to the operating room
Within three weeks of her awake brain surgery, Stefanie was back in school. Determined to become a doctor herself one day, she didn’t want to miss a semester of pre-med courses. But after a few months, she felt her symptoms were returning. “I was starting to feel really tired and I was getting seizures again,” said Stefanie. Knowing this could be a part of the healing process, Stefanie wasn’t concerned. But when it was time for her checkup, MRI scans showed scar tissue and the possibility that the tumour had returned.
Stefanie would need to undergo a second awake surgery to remove more tissue from her brain. But she wasn’t going to let this get in the way of her dreams. “I thought I would have my surgery, take a bit of time off school and then head right back to my studies,” she said. Dr. Sinclair was able to remove both the scar tissue and some areas concerning for tumour progression. By all accounts, the surgery was considered a success. But while in recovery something significant and unexpected had changed for Stefanie. “I woke up thinking all I wanted to do was bake.”
Becoming a Michelin star pastry chef
For a year straight following her surgery, Stefanie baked a cake every day. “It was so meditative and healing for me,” Stefanie said. She knew medical school was no longer the right path for her. She had new dreams — to become a professional baker.
In 2012, she graduated from Le Cordon Blue Ottawa Culinary Arts Institute and went on to work for some of the top Michelin star restaurants in the world — a career that has been fulfilling on many levels.
When Stefanie decided to undergo treatment, she didn’t anticipate the experience would change the course of her life so dramatically. She credits The Ottawa Hospital for giving her the chance to chase her dreams and explore whatever the future might hold for her. “Thanks to my incredible healthcare team I’ve lived my life to the fullest and I don’t take any day for granted,” said Stefanie. “I’ve been able to check everything off my bucket list and now I’m writing a new one, with even more dreams to chase.”
Hope for the future
At first glance, you would never know Stefanie went through full-day awake brain surgeries — her blonde, curly hair covering any remaining scars she has accrued. She’s a strong woman who hasn’t let any negative circumstance in life get her down.
“With this new treatment method for oligodendroglioma, I can’t say that a cure is impossible.” – Dr. John Sinclair
The innovative treatment, which removed the tumour before it could become cancerous, meant Stefanie has been able to indefinitely postpone both chemotherapy and radiation. Under the care of our experts, Stefanie is feeling better than ever. Her latest scans show there is no sign of recurrence.
“Stefanie is in unchartered territory,” said Dr. Sinclair. “We can’t say for certain if or when the tumour will come back. But, with this new treatment method for oligodendroglioma, I can’t say that a cure is impossible.”
Because of the excellent care Stefanie has received at our hospital, she has decided to continue to live near Ottawa. “My hope is to continue to be looked after by this group of incredible doctors,” Stefanie said. “I feel so fortunate to be in their care.”
The Ottawa Hospital is a leading academic health, research, and learning hospital proudly affiliated with the University of Ottawa.
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Growing up, Dan Lynch learned to help others whenever he could. It was something instilled in him as a young boy by his parents and it’s a quality he’s carried throughout his life. It’s what inspired him and his wife, Wendy, to leave a gift in their will to support multiple myeloma research at The Ottawa Hospital following his care at the Cancer Center’s Medical Day Care Unit (MCDU).
Born and raised in Montreal, Dan spent 30 years as an aircraft mechanic. He met Wendy in 1988, thanks to some mutual friends who invited them to a party. Two years later, they married and by 1991, they settled on a picturesque piece of property in Green Valley, Ontario — near Lancaster. It’s a sprawling 43 acres which keeps Dan busy. “There’s always something to do here with about 200,000 trees. I’m up early to feed the dog and cats, and then I’m on my way, but by 1 p.m. I need to relax because I get tired easier these days,” he says.
Flu-like symptoms and concern for his kidneys
The reason for his fatigue these days dates back to July 2019. It all started when he had persistent flu symptoms for two weeks — he just couldn’t shake them. Wendy’s prompting convinced him to go to the Glengarry Memorial Hospital in nearby Alexandria. “Blood tests revealed my creatinine levels were extremely high, and there were concerns about my kidney function,” explains Dan.
“I never realized how important The Ottawa Hospital was until I needed it. Until 2019, I had never been sick in all of my 66 years.” – Dan Lynch
Based on those test results, doctors had Dan transferred by ambulance to The Ottawa Hospital for possible emergency dialysis. However, following further testing, Dan and Wendy received a devastating diagnosis. “The doctors told me that the problem with my kidneys was the result of my having cancer – multiple myeloma,” he remembers.
The news was shocking. While Dan hadn’t been feeling well, he never imagined the words cancer or multiple myeloma.
What is multiple myeloma?
Multiple myeloma is a rare form of cancer that forms in plasma cells. These cells are a type of white blood cell that produce antibodies to help fight off infection. When someone is diagnosed with multiple myeloma that means these plasma cells are changing, dividing uncontrollably — making more cells that are abnormal.
Symptoms can include bone pain, fatigue, and weakness from anemia, and kidney abnormalities — all symptoms which Dan had experienced.
Men are more likely than women to be diagnosed with multiple myeloma and the median age of diagnosis is 68. This form of cancer is discovered through routine blood tests for other conditions, or a doctor might order a test for it if a patient has the symptoms. There are a variety of ways to treat patients with this type of cancer including a stem cell transplant.
“It was a learning experience and we’ll always be a part of the hospital because of the care Dan received.” – Wendy Lynch
There are two major types of stem cell transplants. Allogeneic, when stem cells come from a donor, and autologous, when a patient like Dan can provide their stem cells.
Initially, Dan remained in hospital for about 10 days to stabilize him. He then returned to our Cancer Centre every Friday for chemotherapy treatment for 16 weeks. This would prepare him for a stem cell transplant and Dan learned he could be his own donor. “Not everyone is able to donate their own stem cells. I felt very lucky to be able to do so, thus reducing the chances of infection and/or incompatibility with the donor’s cells,” he admits.
Medical Care Day Unit plays a crucial role
By January of 2020, Dan’s care team would harvest his stem cells, four bags in fact, and freeze them prior to replacing them back into his body. On February 17, Dan was admitted to the hospital and given a large dose of chemotherapy. Two days later — his reinfusion day — his now healthy stem cells were placed back in his body, giving Dan a new lease on life.
“I’m in remission. The disease is not curable, but it can be treated. The staff at the Cancer Centre saved my life.” – Dan Lynch
Both of these procedures happened as an outpatient in our Medical Care Day Unit. The Ottawa Hospital Transplantation and Cellular Therapy (TCT) Program performs about 200 transplants a year. Our TCT program was the first program outside of the United States to receive accreditation from the Foundation for the Accreditation of Cellular Therapy (FACT), which sets the global standard for top quality patient care in cellular therapies. The TCT provides care across four sites including the MDCU where Dan received his stem cell transplant.
“I’m in remission. The disease is not curable, but it can be treated. The staff at the Cancer Centre saved my life,” says Dan.
Forever grateful to The Ottawa Hospital
On March 7, 2020, he returned home to the couple’s sprawling land — the property that brought so much joy to him and his wife — to start the next chapter of their lives.
Today, Dan and Wendy are thankful for our hospital — admitting they didn’t realize the significant role it played. “I never realized how important The Ottawa Hospital was until I needed it. Until 2019, I had never been sick in all of my 66 years,” he says.
“Take some time to think about what you can do to help others. It feels good to make a positive contribution to help the hospital both now and in the future.” – Dan Lynch
For Wendy, standing alongside her husband throughout this journey and witnessing the incredible care he received, fills her with gratitude. “It was a learning experience and we’ll always be a part of the hospital because of the care Dan received.”
The couple decided they wanted to do something significant to say “thank you” to our hospital. Thinking back to those values taught to him many years ago by his parents, Dan and Wendy decided they would leave a gift in their will to support The Ottawa Hospital. “We’re so grateful for what they did for me. Thanks to all the doctors, nurses, orderlies, nursing assistants, and volunteers who work so hard for patients like me. Their compassion and professionalism towards their patients under difficult circumstances is beyond reproach. Now I want to help the people who saved me.” Dan adds, “Drs. Gregory Hundemer, Arleigh McCurdy, and Michael Kennah played an important role in my care, and I can’t thank them enough.”
Dan also offers some friendly advice to others about planning for the future. “Try to do what you can and do all you can. Take some time to think about what you can do to help others. It feels good to make a positive contribution to help the hospital both now and in the future. We never know what will happen. A devastating diagnosis to you, your family, and friends can hit when you least expect. The members of the treatment teams at The Ottawa Hospital will always be there for us; let’s be there for them now and in the years to come.”
More Inspiring Stories
Date: June 10, 2021
Time: 12:00 to 1:00 p.m.
Note: This event has closed. If you would like to receive a link to the event recording, please email email@example.com
The Ottawa Hospital is challenging the boundaries of conventional cancer care and making critical advancements in cancer research. Join us for an hour-long lunchtime event to hear directly from our cancer experts on:
Their vision for cancer research
Personalized medicine such as molecular oncology
Live Q&A with our experts
Breakout rooms for Blood, Breast, and Prostate Cancer
The Ottawa Hospital is a leading academic health and research centre and teaching hospital proudly affiliated with the University of Ottawa.
Rare is a word used to describe Bryde Fresque on many levels. He has a zest for life that sets him apart. In fact, his physician Dr. Carolyn Nessim, a surgical oncologist and clinician investigator at The Ottawa Hospital saw this firsthand when Bryde faced a diagnosis that would have him battle for his life, with one rare condition after the other. Ultimately, it would take a skilled team to come up with a diagnosis and treatment for Bryde – a pheochromocytoma – an uncommon tumour that left Bryde’s future uncertain.
Bryde’s journey to his diagnosis of a rare cancerous tumour began on Boxing Day of 2012. He was travelling home from Napanee when he started to have pain in his left side. He stopped at a pharmacy just outside Ottawa and by the time he got to the counter he was doubled over in pain. The pharmacist told Bryde to get to the closest hospital — a community hospital was not far away.
Not long after arriving in their emergency room, Bryde was sent by ambulance to The Ottawa Hospital where he could receive care that is more specialized. He was in a tremendous amount of pain. Upon arrival, Bryde was suffering from a spontaneous hemorrhagic rupture of the left adrenal gland and he was bleeding significantly. Thankfully, he was in good hands as our interventional radiologists performed an emergency embolization procedure. This is a procedure where a guide wire was placed in a vessel in his leg and that allowed physicians to get all the way to the bleeding vessel by the adrenal gland, at which point they injected a product that plugged the vessel and stopped the bleeding. He was hospitalized for ten days before he was able to go home.
Unusual symptoms continue to develop
Bryde continued to feel off. A young, active man, Bryde recalls unusual symptoms that he couldn’t shake. “I remember feeling really sweaty, I couldn’t cool down properly. I would stand under the gym’s cold water shower for 15 minutes post bike ride and it didn’t make a difference,” recalls Bryde.
By the summer of 2013, he was going through a battery of tests and questions at our Cancer Centre to try to pinpoint the diagnosis.
“He had such rare conditions – one right after the other.” – Dr. Carolyn Nessim
Though, at only 32 years old, cancer was the furthest thing from Bryde’s mind. “I was young, healthy, a non-smoker, non-drug user, and active. That active part of my life was actually the only time I initially showed symptoms. That’s when I would overheat on even the coolest days and couldn’t cool down afterwards.”
The spontaneous rupture of Bryde’s adrenal gland six months earlier contributed to the challenge of pinpointing a diagnosis. It was believed he suffered from a large hematoma – a large residual clot after the bleed. “He had such rare conditions – one right after the other. A spontaneous rupture of an adrenal gland happens very rarely. I would say the challenge is that because the blood clot is so significant, it hides the underlying tumour and so it’s difficult to identify on imaging,” says Dr. Nessim.
Pinpointing the cause
As time progressed, Bryde developed issues breathing, he couldn’t bend in certain directions, and then he noticed a distention on his left side. Signs that had been pointing to a hematoma didn’t add up because a hematoma should have healed within a few months, according to Dr. Nessim. That’s when she started looking at the fact this could be a tumour.
Bryde’s case ultimately landed with The Ottawa Hospital Sarcoma Tumour Board. “We meet every Friday to discuss complex cases like Bryde’s. Everyone is in the room including medical oncology, radiation oncology, pathology, radiology, and surgery. We take each individual case and we discuss it as a group to determine the best course of action for a patient,” explains Dr. Nessim.
This panel of experts decided that surgery was the best course of action to not only diagnose Bryde’s condition but to treat him at the same time and remove this tumour that had significantly affected his quality of life. Given the large size of the tumour and the extent of organs it seemed to be invading on imaging, this would be a long and extensive operation with many potential risks and complications that would be best mitigated by a specialized team. The sarcoma team is well equipped and knowledgeable in how to do these complex operations. Our hospital is one of the three Cancer Care Ontario designated Sarcoma Centers in the province. Although Bryde did not have a form of sarcoma, the surgical approach for a pheochromocytoma is the same.
Most unusual pre-op visit
By the fall of 2013, the mass located on Bryde’s left side was now the size of a cinder block. Staying true to his rare and unique personality, Bryde, who loves Halloween, showed up for his pre-op appointment on October 31, 2013, wearing his homemade Iron Man costume!
On November 15, a huge team of more than 20 medical professionals assembled in the operating room. As Bryde lay on the operating table awaiting surgery, he recalls Dr. Nessim telling the team about the Halloween pre-op appointment, “Then she looked down at me and said, ‘Take a deep breath, Iron Man’ as I was intubated.”
Bryde had to put his full trust in Dr. Nessim and her team during the complex, 12-hour surgery. The procedure can carry several risks because although Bryde seemed to have a non-functional pheochromocytoma, with the stress of surgery there is always the risk of stimulating the tumour causing it to release adrenaline, which can lead to a serious increase in blood pressure during surgery. Bryde was given some special medications during the operation to help ensure that didn’t happen.
“I feel privileged every time I’ve been able to help a patient.” – Dr. Carolyn Nessim
Just prior to going into the operating room for this intricate surgery, Dr. Nessim reviewed the scans one last time and then visualized each step, planning the order they would follow to remove the tumour successfully. The highly skilled group alongside Dr. Nessim included a urologist, a thoracic surgeon, and a Hepato-Biliary and pancreatic surgeon, along with two anesthesiologists. “It was a big case,” says Dr. Nessim.
Bryde had his left kidney removed, as well as his left adrenal gland, and a third of his pancreas. They performed a colon, bowel, and diaphragm resection and reconstruction for each, removed his spleen as well as an accessory spleen, which can be found in many patients, 10 lymph nodes, and the hematoma. Thankfully, Dr. Nessim was also able to remove the entire tumour. The surgery was a success.
Finding the answers
Bryde spent a total of 40 days in hospital recovering, and it was during that time that he finally received an explanation for his symptoms. He was diagnosed with pheochromocytoma, which is a rare form of tumour that can be cancerous. They usually form on one of the body’s two adrenal glands, which are located above the kidneys, and approximately 10% of pheochromocytomas spread to other parts of the body. Pheochromocytomas can be dangerous because they may produce an excessive amount of the hormone adrenaline, which makes people sick, primarily by increasing their blood pressure. In Bryde’s case, what made a diagnosis challenging before surgery was that his pheochromocytoma was considered non-functional, and his urinary tests for adrenaline markers were negative. But it’s possible it was releasing low levels of adrenalin all along.
“The Ottawa Hospital is very well positioned in the study and treatment of this rare but dangerous tumour.” – Dr. Neal Rowe.
“It potentially explains all his sweating and feeling very flushed and hot as maybe he had a subclinical release of adrenaline,” confirms Dr. Nessim. Bryde also learned the tumour was cancerous.
Expertise in pheochromocytomas
Much of the research, around the globe and here at our hospital, focuses on timely detection and treatment of pheochromocytoma. Dr. Neal Rowe is a clinical urologist at The Ottawa Hospital researching this type of tumour. “There are several known genes that increase the risk of a patient developing a pheochromocytoma. By identifying these genes in people, we can test family members, achieve early detection, and better understand the biology behind why these tumors form.” Dr. Rowe says this type of tumour affects between one to two cases per 100,000.
“Thanks to Dr. Nessim and the team at The Ottawa Hospital, I got better – I get to enjoy my life to the fullest. I got to marry the girl of my dreams and I got to become a father.” – Bryde Fresque
“The Ottawa Hospital is very well positioned in the study and treatment of this rare but dangerous tumour. We have a collaborative group of experts in endocrinology and medical genetics in addition to a dedicated team of anesthesiologists and surgeons. With our research and development of various national initiatives, I think we’re front and centre,” says Dr. Rowe.
Moving forward, upwards, and giving back
Today, Bryde is seven years post surgery, and cancer free, with no signs of recurrence. While his recovery took time, he’s back to living his active life and truly grateful for the care he received. In fact, to raise funds and awareness for rare neuro endocrine cancers, Bryde and his wife, Natalie, climbed Mount Kilimanjaro in Tanzania, as well as the highest pass in the world, located in Annapurna range of the Himalayas in Nepal – all while still being considered a cancer patient.
“Being a cancer patient or being sick is a life-changing event. Thanks to Dr. Nessim and the team at The Ottawa Hospital, I got better – I get to enjoy my life to the fullest. I got to marry the girl of my dreams and I got to become a father.” He adds, “I honestly think if I had been anywhere else, if I had been under anyone else’s care, I probably wouldn’t be here today. I really wouldn’t.”
That’s why Bryde also holds an annual Halloween fundraising party, known as Spadinaween, to support our hospital. To date, he’s raised over $10,000 and Dr. Nessim even drops by to show her support.
The special bond between this patient and physician continues, as Bryde even enrolled to help Dr. Nessim with a global research project on sarcomas. For Bryde, it’s an honour to help other patients. “Me giving back to The Ottawa Hospital has come full circle as I was invited to partake in an international study on sarcomas with Dr. Nessim and other doctors from the UK, Italy, the States, Netherlands, and Australia – to help improve the patient experience. If I can turn a negative into a positive. I’m in!”
Seeing Bryde thrive today is what makes those long, grueling days in the operating room and the constant search for answers worthwhile. “It’s why I do my job. It’s the biggest joy and most rewarding,” says Dr. Nessim. “I feel privileged every time I’ve been able to help a patient.”
The Ottawa Hospital is a leading academic health, research, and learning hospital proudly affiliated with the University of Ottawa.
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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.
“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.
“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
“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.”
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.”
“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 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 and research centre and teaching hospital proudly affiliated with the University of Ottawa.
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Cameron Love is the President and Chief Executive Officer of The Ottawa Hospital. He took on this leadership role as of July 1, 2020, in an unprecedented time as Ontario’s health system adapts to new a service model in the wake of COVID-19. Through this experience, and as Executive Vice-President and Chief Operating Officer of The Ottawa Hospital since 2014, he was responsible for the leadership and oversight of programs and services across the hospital, and their integration into regional programs throughout the Champlain region. He’s been with TOH for over twenty years.
Evan Solomon is Host of CTV’s weekly political program, Question Period and host of Power Play. He also hosts a daily radio program on 580 CFRA. Solomon is a two-time Gemini Award-winner and best-selling author who has covered federal and provincial politics, news, and current events for more than 15 years.
Making waves for breast cancer patients
Andrea Douglas’ swim club was so inspired by her journey battling breast cancer that they created a grassroots event called OlymPINK Masters Sprint. Their inaugural event at the Brewer Pool in 2018 blew their goal out of the water with 120 swimmers, including six Olympians, and $19K raised for The Ottawa Hospital’s Rose Ages Breast Health Centre. OlymPINK raised $44K in year two, and last year an incredible $70K, despite the actual swim being cancelled due to COVID-19.
“Thankfully, The Ottawa Hospital is prepared for each and every one of us receiving a cancer diagnosis.”
– Andrea Douglas
Q: What is OlymPINK and what inspired you to create this fundraiser?
A: When I was diagnosed with breast cancer in 2014, my whole world was turned upside down. No one is ever prepared for those words “you have cancer.” Thankfully, The Ottawa Hospital is prepared for each and every one of us receiving a cancer diagnosis. From the very first meeting with my breast oncology surgeon, I knew I was in good hands. And from that day forward, through surgery, chemotherapy and radiation, I received incredible care. For my care and for my health today, I remain grateful and felt it was important to give back to the hospital that had saved my life.
Together with the support of my Masters’ swim coach and many wonderful teammates, we came up with the idea of a fundraiser to support the hospital’s Rose Ages Breast Health Centre. One in eight women in Canada will develop breast cancer—we all know someone — neighbours, sisters, friends, mothers, or daughters who have been and will be impacted, and we need to make sure the most up-to-date technology is at hand when they need it most.
Q: Why is the Rose Ages Breast Health Centre at The Ottawa Hospital so important for breast cancer patients?
A: You can’t imagine the emotional turmoil you face when you learn about a breast cancer diagnosis or any other life-threatening diagnosis. For those facing breast cancer, it’s important to know that there is the Rose Ages Breast Health Centre that will embrace you with the care you need. And it’s not just about cancer, it’s about breast health. It’s about the best imaging and cutting-edge technology, all under one roof, to guide women through everything from screening to diagnostics to treatment plans.
“We need to work together to be the change, to make that difference, and to save lives.” – Andrea Douglas
Q: What would you tell someone who might be considering a donation to The Ottawa Hospital?
A: I feel a sense of responsibility that comes with being one of the “lucky” ones. And that’s why I fundraise for The Ottawa Hospital. Because every piece of technology and every bit of research that could mean one less woman faces this disease or has this disease stopped in its tracks sooner, is worth every penny. We need to work together to be the change, to make that difference and to save lives.
From leukemia patient to multi-marathoner – with a walker
Leukemia, radiation and chemotherapy, a bone marrow transplant, and a blood clot in his intestine and neck haven’t slowed Robert Hardy down. In fact, he feels stronger than ever and is ‘walker-running’ marathons in support of The Ottawa Hospital.
Robert (Bob) Hardy has been in a fight for his life for more than 20 years. From a bone marrow transplant for leukemia, to a blood clot in his intestine and his neck, it seems nothing can slow him down. In fact, thanks to lifesaving care at The Ottawa Hospital, he’s stronger than ever and unwavering in his desire to compete in some of the most renowned marathons around the world — with his walker. Beating his personal best time, year after year, you wouldn’t suspect that this ‘Walker-Runner’ initially had only a 40% chance of survival.
A startling diagnosis
There was a time many years ago when Bob believed he only had six months to live. Feeling slightly fatigued, but healthy overall, he went for a routine physical. When his examination results returned, Bob received startling news. At only 46 years old, and long before experiencing any side effects of the disease, he was diagnosed with leukemia. Bob and his wife, Vittorina, were stunned. All they could think about was how they would tell their two young girls, Shannon and Leah, who at the time were only 13 and nine. “It was a really big shock for all of us. The thought of having to tell our children wasn’t easy, but it wasn’t something I was willing to hide from them either,” said Bob.
But if you’re looking for a woe-is-me attitude, you won’t get it from Bob. Even a diagnosis of this magnitude couldn’t bring him down. “When I told my youngest daughter, Leah, about my diagnosis,” said Bob, “she told me ‘you’re too strong to die, dad.’” That was the encouragement Bob needed to hear. It was her words that motivated him to fight back and beat the disease.
A fight for his life
Up until Bob’s leukemia diagnosis he was studying jiu-jitsu – and fit as ever. But while he waited for a match donor for a bone marrow transplant, the medication, interferon, that doctors prescribed to maintain his health was making him weak. Bob was struggling to continue with his training. “I wanted to get my black belt before undergoing my bone marrow transplant,” expressed Bob. He felt a black belt would give him the confidence he needed to begin the long road to healing and recovery. Knowing just how much this milestone would mean to Bob, his doctors allowed him to temporarily discontinue taking interferon for two months prior to Bob’s black belt test, so that he could continue training for the big day. And when that day came, he got his black belt – with honours. It was only then that he felt ready for his bone marrow transplant and the ups and downs that would follow.
A perfect match
After a year of taking interferon, a six-antigen match donor for the bone marrow transplant was found. At the time, performing a bone marrow transplant using an unrelated donor was still relatively new. But researchers discovered that patients can have a match donor outside of their family. “It isn’t common for two people to have the same set of six antigens if they aren’t blood related. I was lucky. They found a perfect match,” explained Bob. More recently, however, advances in research have allowed our experts to perform a transplant using an incompatible donor, significantly reducing the time patients must wait for a match donor. “What this means is that, where once many did not have a donor, now almost everyone has one,” explained Dr. Huebsch. “This research is truly groundbreaking.”
With a donor ready to help, the pre-transplant treatment of high doses of chemotherapy and radiation to suppress Bob’s immune system began. Four weeks later, his immune system was primed to receive the bone marrow transplant. He underwent this procedure at The Ottawa Hospital, and remained in our care for three weeks to ensure the transplanted healthy cells were multiplying – and they were.
Although doctors wanted Bob to remain in hospital for a few weeks post treatment, he was able to go home for the majority of his recovery. In fact, Bob benefited from our innovative outpatient bone marrow transplant program that has allowed thousands of patients to be treated and recover more conveniently from home. This program was one of the first in Canada and, since its inception, our patients have been surrounded by loved ones throughout recovery.
Thrombosis expertise in Ottawa
Over the course of the next two years, Bob was in and out of the hospital. “The first two years were the hardest. I had a lot of side effects from my treatment,” said Bob. One of the most severe side effects Bob experienced was blood clotting. The first to appear was in his stomach and a second in his neck. Cancer patients are often at greater risk of blood clotting as chemotherapy is hard on the veins. Approximately one in every twenty cancer patients will experience blood clotting – often a life-threatening complication. But Bob was in good hands. He benefited from the development of a tool to help diagnose blood clots quickly, known as the Wells Rule, after Dr. Phil Wells, an expert at The Ottawa Hospital. This tool is now used in emergency rooms and taught in medical schools around the world.
“We have one of the best thrombosis departments in Canada, attracting experts in the field from across the globe.” – Dr. Marc Carrier
Researchers have since implemented a comprehensive program for managing blood-thinning medications for patients at higher risk of developing blood clots, including cancer patients like Bob. This program has ensured that patients at our hospital are more likely to have optimal blood thickness, and less likely to develop blood clots.
More recently, our experts have developed a system to identify the likelihood that a cancer patient will develop blood clots. Although this was not yet available at the time of Bob’s diagnosis, this innovative tool can classify newly diagnosed cancer patients as being at greater risk and they can receive personalized care based on their unique circumstance to prevent blood clotting. “We have one of the best thrombosis departments in Canada, attracting experts in the field from across the globe,” said Dr. Carrier, Chief, Division of Hematology. “Our highly specialized and dedicated researchers are developing groundbreaking procedures that demonstrate our commitment to continuously moving research and treatments forward, so that we can continue to provide exceptional care to each patient that walks through our doors,” said Dr. Carrier.
World-class care in Hematology
Throughout Bob’s treatment, he was cared for through The Ottawa Hospital Hematology and Thrombosis Program, one of the best and largest in Canada. Unlike many other hospitals, where patients must travel to different hospital departments and satellite locations to receive treatment, our unique program provides centralized care for patients with diseases of the lymph glands, blood, and bone marrow for patients across eastern Ontario and beyond.
“We are among the best. Ottawa is at the centre of all sorts of blood transfusion medicine and we’re one of the leading centers in the world for doing, and researching, transplantation for life threatening diseases.” – Dr. Lothar Huebsch
The program, which has attracted leading researchers from around the world, is renowned for the development and advancement of world-first procedures that are changing lives. “We are among the best,” explained Dr. Huebsch, Clinical Hematologist and former head of hematologic oncology. “Ottawa is at the centre of all sorts of blood transfusion medicine and we’re one of the first in the world to successfully perform transplantations for life threatening diseases.” Our Hematology and Thrombosis Program has led the way for decades, researching transplant techniques with other illnesses such as multiple sclerosis, autoimmune diseases, and lymphoma. “This is the kind of research we’ve done for 25 years, and we are one of the leading centers in the world for doing these transplants in the outpatient setting, rather than in a high intensity ward as an impatient,” said Dr. Huebsch.
Road to recovery inspires ‘walker-running’
With so much time spent in and out of hospital throughout his treatment, Bob needed something to do to keep himself busy while he recovered. So, he got creative. “A few of us used to take our IV polls and race them down the hallways. The nurses couldn’t believe how fast we were moving!” What Bob didn’t realize at the time was racing IV polls would later spark aspirations to participate in some of the most renowned marathons.
Following treatment for the blood clot in his neck, Bob lost his sense of balance. Although he can walk short distances without an aid, he’s unable to run or walk long distance. That’s when Vittorina suggested he get a walker. “At first, I was hesitant about using a walker, but then I realized how fast I could move!” said Bob. And so began his passion for ‘walker-running’.
Bob started his walker-running career participating in the Wobbly Walker-Walk-a-thon, but soon shifted into high gear signing up as a marathoner in Run for a Reason at Tamarack Ottawa Race Weekend. His marathons not only accomplished a personal goal, but also raised funds in support of The Ottawa Hospital.
A new appreciation for life
Bob’s road to recovery hasn’t been an easy one, but there hasn’t been a day he’s felt sorry for himself. Over the years he started to get stronger and complications were fewer and far between. “I am so thankful for the treatment I received. The nurses and my doctors were outstanding – absolutely incredible,” said Bob. “I’m here today, pursuing my passion for walker-runner marathons, because of them. They saved my life.”
Of course, there are still some days that Bob feels more run down than others. On those days he tries to take a walk to reminisce on how far he’s come in his recovery. “I know what it takes to get over things and to get through things. Not only did I have the very best care at The Ottawa Hospital, I had something to live for. I was able to watch my girls grow up. And now, here I am at age 69, almost 70, I’ve overcome countless obstacles and have jumped over hurdles, and I’m really quite happy with my life. I’m really very happy.”
“I am so thankful for the treatment I received. The nurses and my doctors were outstanding – absolutely incredible.” – Bob Hardy
The Ottawa Hospital is a leading academic health, research and learning hospital proudly affiliated with the University of Ottawa.