While parked at the local Home Depot, Gretta Hutton received her diagnosis over the phone: it was Mantle Cell Lymphoma, she had 2 – 5 years to live, and there was no treatment offered beyond the standard of care treatment. After weeks of feeling hopeless, Gretta found a clinical trial at Hamilton Health Sciences led by Dr. Tom Kouroukis. A year later, Gretta’s cancer was in full remission.
Gretta shares her insights at the 2015 Healthier, Wealthier, Smarter conference.
Can you tell us a bit about yourself and your health story?
By day, I am a social worker in the health sector, counselling clients who are struggling with critial illnesses. In 2014, I began to feel ill myself and went to see my doctor for some tests. Driving home from work one evening, I received a call from my internist wanting to share the results. He asked that I pull over so I drove into the parking lot of my local Home Depot where he then gave the diagnosis: stage 4 Mantle Cell Lymphoma. A subsequent meeting with a local oncologist revealed that I had 2 – 5 years to live. More than that, I wasn’t given any alternative treatment beyond the standard of care, RCHOP, that might help me beat my cancer. But thanks to the persistence of my friend and my sister, I discovered a clinical trial led by Dr. Tom Kouroukis at the Juravinski Cancer Centre at Hamilton Health Sciences (HHS). The care that I am receiving in that trial is outstanding. Dr. Kouroukis listened to me, not just as a patient, but as a person, and walked me through the science of the trial and my care plan.
Why does health research matter to you?
If you asked me two years ago whether I thought I’d be back at work and able to resume my normal activities, I don’t think I would have believed you. This place, and the research here, has saved my life.
I was very ill at the beginning of the research study—sleeping a lot, exhausted—but that started easing up within the first two months. After 12 weeks, I was feeling “normal”. When I didn’t dare to hope that I would beat my cancer, the research team was there, bringing my hope to life with the data and the results from the study. Now here I am, and I have my life back.
Health research, and the clinical trials that result from it, are really important because they offer patients a different path. Having options, especially when you’re ill, is really important.
How does health research contribute to a healthier Ontario?
Clinical trials don’t exist in a vacuum; they are the results of a whole body of scientific study. They move research discoveries into new and better therapies for patients like me. Without health research, you can’t have clinical trials, and without clinical trials, you can’t improve the health of Ontarians.
How can patients and families support, improve or empower health research?
One of the hesitations that people might have in participating in clinical trials is the safety aspect of it. The best people to help reduce fear, hesitation or, in some cases, stigma are the people who have gone through clinical trials. Those of us who have thought through the risks and the benefits, who have worked with the researchers and staff, and who have come out on the other side with renewed hope—we are the ones who need to share our stories with the public and be strong champions for health research.
Patients and the public also have an important opportunity to voice their health research needs to decision makers. If there are life-saving clinical trials and medicines available, then patients should be aware and have access to them. In my role as Ontario Lay Representative on the Canadian Cancer Clinical Trials Network since November 2015, I am working hard to ensure that that conversation takes place at the point of diagnosis for every patient with cancer or other serious illness even if their local hospital is not a research hospital in a major urban centre. Where you live should not be the determining factor in being offered access to research.
Our health system, including research and clinical trials, is a public system, and so the public itself can be a voice of change.