Patients + Research: Andra Fawcett

Meet Andra

Andra survived a major stroke in her early 50s. She continues her progress to full mobility, but she’s also keen to help others by taking part in research. She was excited to participate in a study using the KINARM, a game-changing robotic technology used in all three Kingston academic research hospitals to assess the neurological impact of a wide range of injuries and diseases. The reams of data produced by the KINARM are used to help researchers and clinicians better understand the effects of brain injuries such as stroke.

Can you tell us a bit about your family and your family’s health story?

I had my first stroke when I was 49. It was a mini-stroke (or TIA) and I lost the use of my left arm and hand for about a month. Two years and two months later, I had a major stroke.  I was at home and I was feeling tired, nauseous, weak, and dizzy. I was stumbling and my left foot felt heavy, but light at the same time.  I realized this was not normal. My daughter-drove me to hospital. While I was waiting in the ER, I didn’t have any of the classic stroke symptoms – my face wasn’t drooping, I didn’t have trouble speaking, I never really felt anything. But when I woke up the next day, I had lost all my mobility on my left side.

I was in Kingston Health Sciences Centre’s Kingston General Hospital for two weeks and then six weeks in rehab at Providence Care. After my TIA, my stroke doctor connected me with the KINARM. It’s a robotic system that assesses how brain injuries affect our ability to move and function. After my second stroke I started doing more testing with the KINARM group. I’d go every six months or so, and I’ve done it for the last couple of years.

The KINARM collects detailed data about how the stroke has affected me, and how I’m gradually recovering. This information is valuable to researchers because I’m younger than the average stroke patient. Everyone’s stroke is different, and everyone recovers differently, so I’m hoping the information that they’re getting from me will help them better understand stroke.

Andra Fawcett Kingston Health Sciences Centre CAHO
Andra sitting in KINARM, a robotic system that assesses how brain injuries affect motor function

What does health research mean to you?

Research is how doctors are going to find new ways to prevent or treat strokes. When I was in hospital, I was a lot younger than the other stroke patients, but they were up and walking while I was staggering around like a toddler. I’m hoping that the KINARM can gather enough data from me to tell them why it takes a 50-year-old longer to recover than an 80-year-old. That’s what research is about – it can determine the hows and whys.

How can the patient voice support, improve or empower health research?

The more patients share their experiences, the more we can all learn. It’s about getting involved, because stroke patients get a lot more from people who have gone through it. I give talks at our hospitals and I use social media to share stories.

Why does health research matter to you and your family?

I’m thankful for the health care I received, because without it I wouldn’t be here today. It takes patients like me, and others, participating in research, providing feedback, it’s how we learn. It’s important to me to do what I can and give back, because that could help someone down the road. If my test results are helping in this research, I’m proud to be a part of it.

How does health research contribute to a healthier, wealthier, smarter Ontario?

Research is important and we can all do our part by taking a little bit of effort to help researchers find out the “whys”, like why do strokes happen to young people, and why does it take some of us longer to recover than others? How can we change this? You do that by getting involved.

 

Top photo by M. Manor, Kingston Health Sciences Centre; KINARM photo by Ethan Heming, BKIN Technologies

 

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Ontario research hospitals, including Kingston Health Sciences Centre, make our province healthier, wealthier and smarter. Read more Patients + Research posts and share your own insights on Twitter with the hashtag #onHWS. Learn more about how hospital-based research makes Ontario healthier, wealthier and smarter.

 

 

Patients + Research: Dr. David Gray

Economics professor Dr. David Gray took part in a clinical trial at The Ottawa Hospital to see whether an immunotherapy drug could keep his high-risk skin cancer from coming back. Four years later, he’s still cancer-free.

Dr. David Gray’s cancer was hiding in plain sight.

“It was a blemish on my cheek that just wouldn’t heal,” said the University of Ottawa economics professor and father of two. “My dermatologist didn’t like it, so he had it tested.”

When his dermatologist removed the pea-sized tumour from Dr. Gray’s face, further tests revealed that it was Stage 3c melanoma. He was at high risk of the cancer spreading to other parts of his body.

“During the initial visit, the surgeon told me that the five-year survival was below 40 per cent,” he said.

Faced with those odds, Dr. Gray decided to join a clinical trial that compared an immunotherapy drug called ipilimumab to interferon, the currently publicly-funded treatment used to keep melanoma from returning.

Ipilimumab helps the immune system attack cancer cells anywhere in the body. However, it can have serious side effects. After Dr. Gray’s fourth treatment, his hormonal (endocrine) system went into crisis, and he was hospitalized for four days. He continues to take hormone replacement medication today.

These kinds of side effects have motivated researchers to look for more effective and safer options, said his oncologist at The Ottawa Hospital, Dr. Xinni Song.

“Physicians treating melanoma are looking for something better to keep the cancer from coming back,” said Dr. Song, who is also an assistant professor at the University of Ottawa. “Our patients are very keen to take part in clinical trials, which can not only help them, but future patients as well.”

Four years after taking part in the trial, Dr. Gray is still cancer-free. The results of the trial are still to be published.

“You can’t attribute my survival 100 per cent to the treatment. But my wife certainly does,” said Dr. Gray.

“For me, it was very meaningful that he can enjoy his life with his family and go back to work and continue to teach,” said Dr. Song. “He’s remained cancer-free, and the hope is that he is cured from the disease.”

To spot melanoma early, Dr. Song recommended that you tell your doctor if you notice any changes in your skin, such as new spots or marks that grow or change in colour.

The Ottawa Hospital is a major centre for cancer immunotherapy clinical trials. Researchers at the hospital are also developing new kinds of immunotherapy, such as cancer-fighting viruses and genetically-engineered immune cells. Dr. Gray’s story was originally published on The Ottawa Hospital website.

 

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Ontario research hospitals, including The Ottawa Hospital, make our province healthier, wealthier and smarter. Read more Patients + Research posts and share your own insights on Twitter with the hashtag #onHWS. Learn more about how hospital-based research makes Ontario healthier, wealthier and smarter.

North American first: Sunnybrook studies scalpel-free brain surgery to treat depression

For the first time in North America, researchers at Sunnybrook Health Sciences Centre are investigating the safety and effectiveness of using MRI-guided focused ultrasound to help patients with treatment-resistant major depression.

Focused ultrasound is an incision-free, image-guided technology that targets specific areas of the brain using high frequency ultrasound waves.

In this trial, focused ultrasound will be used to cause a lesion in a region of the brain (the anterior limb of the internal capsule) to disrupt a pathway of the brain that has been established as being active in depression. This pathway is considered to be a “highway” connecting the frontal lobes to the emotional centres of the brain, including the amygdala and hippocampus.

“Although we are in the early stages of investigating the safety and efficacy of focused ultrasound in patients with depression, it has the potential to be another treatment option,” says Dr. Nir Lipsman, principal investigator of the trial, and Director of the Harquail Centre for Neuromodulation at Sunnybrook.

Each year, 1 in 5 Canadians will experience a mental health problem or illness, and at some point in their lives, about 24 per cent of adults will experience an episode of major depression.

“I’ve struggled with depression for 30 years and tried just about every treatment in existence,” says Linda Bohnen, the first patient in North America to be treated with focused ultrasound for depression. “What I’m hoping will happen is a slow but steady improvement in my mood and functioning.”

“For patients with major depression who aren’t responding to existing standard treatment therapies, circuit disruption techniques, such as focused ultrasound, make it possible to treat areas deep in the brain noninvasively, without surgical incisions,” says Dr. Anthony Levitt, co-investigator and Chief of the Hurvitz Brain Sciences Program at Sunnybrook.

Focused ultrasound was successfully tested in a world first trial at Sunnybrook and other medical centres for use with patients with essential tremor, which led to Health Canada and FDA approval in 2016. Philanthropic investment has been a major catalyst behind Sunnybrook’s advances in focused ultrasound technology and research. Leading donors to this work are the Weston Brain Institute, The Beamish Family Foundation, FDC Foundation, Slaight Family Foundation, Harquail family through the Midas Touch Foundation and the Connor and Robinson families.

Dr. Kullervo Hynynen, Director of Physical Sciences at Sunnybrook Research Institute, worked with industry partner INSIGHTEC for almost two decades to develop the technology.

“This is innovation, medicine and science coming together to go beyond existing treatments for patients with depression,” says Maurice R. Ferré MD, INSIGHTEC’S CEO and Chairman of the Board of Directors.

“Focused ultrasound is a noninvasive alternative to surgery or radiation that offers the potential to treat more patients with major depression, as well as other psychiatric disorders,” says Dr. Neal Kassell, Chairman of the Focused Ultrasound Foundation. “Sunnybrook has become a leader in focused ultrasound research for brain disorders, and the Foundation is pleased to support this innovative trial.”

Phase I of the trial will involve six patients, ages 25-80 years old, over a one-year period who will undergo one round of focused ultrasound, and then assessed for severity of depression and level of functioning at one month, three months, six months and 12 months.

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Sunnybrook is one of Ontario’s 23 research hospitals that contribute to a healthier, wealthier, smarter province. Look for other RESEARCH SPOTLIGHT posts on our Healthier, Wealthier, Smarter blog or join the conversation about why health research matters for Ontario on Twitter, using the hashtag #onHWS.