The Importance of Clinical Trials: A Conversation with Patient Gretta Hutton

In the spring of 2014, Gretta Hutton received a call from a physician while in a Home Depot parking lot. She was diagnosed with Mantle Cell Lymphoma and given 2 – 5 years to live. After weeks of feeling hopeless, both her sister and a friend told Gretta about a clinical trial at Hamilton Health Sciences led by Dr. Tom Kouroukis. One year later, with her cancer in full remission, Gretta sat down with Catalyst to talk about the importance of clinical trials for Ontario patients.

Gretta Hutton: Where there is a will, there is a way

And if there isn’t a way—make one. This has always been the motto of Gretta Hutton, a strong, self-sufficient woman with a passion for learning, teaching, and making a difference in the lives of others. After enjoying a long career as an educator, Gretta returned to school and completed a Master’s degree in social work, beginning a second career in the health sector, counselling clients with critical illnesses.

In the winter of 2014, she began feeling ill herself. Driving home from work one evening, Gretta received a call from her internist to discuss the results of her tests. She pulled into the parking lot of the local Home Depot and listened as the physician communicated the diagnosis: stage 4 Mantle Cell Lymphoma; 2 – 5 years to live.

Gretta was shocked—not only was the delivery tactless, the diagnosis was devastating. That particular type of cancer is uncommon and especially rare for women, affecting four times as many men. Moreover, she was given no alternative treatment plans that might help her find a cure. But true to her motto, Gretta had the will to find a way, and discovered a clinical trial with Dr. Kouroukis at Hamilton Health Sciences (HHS).

Gretta rings the bravery bell after a completing six rounds of chemotherapy
Gretta rings the bravery bell after completing six rounds of chemotherapy at Hamilton Health Sciences.

Catalyst: How would you describe your experience navigating your diagnosis and searching for a clinical trial?

“It was isolating. When I was given my diagnosis, I was already familiar with navigating cancer care through losing my partner in 2003. I was dismayed that after a decade, access to clinical trial information had not improved for patients. The time in your life when you are least able to navigate care and locate clinical trials is when you need it most, and it is unimaginable that patients often go through that challenge without support or guidance. No one had mentioned the option of clinical trials to me. Instead, I was offered a single treatment path that would give me—at most—five more years of life. Fortunately, through the persistence of my friend and my sister, who both continued looking for clinical trials,  a trial was found under Hamilton Health Science’s Dr. Kouroukis at the Juravinski Cancer Centre. I contacted the health team there and was seen later that same week.”

“I am thankful that I was able to find the trial I needed, but when it comes to the best care options, you shouldn’t need a “will” to find a “way”. From my experience, we need to better integrate the information, guidance and advisement about trials into patient care.”

Phase III Clinical Trial on Mantle Cell Lymphoma at Hamilton Health Sciences

Dr. Tom Kouroukis, Hematology Clinical Lead at Hamilton Health Sciences
Dr. Tom Kouroukis, Hematology Clinical Lead at Hamilton Health Sciences

Dr. Tom Kouroukis, the Hematology Clinical Lead at Hamilton Health Sciences, opened an international phase-3 clinical trial on mantle cell lymphoma looking at a new combination therapy with bendamustine, rituximab and ibrutinib (or placebo) for patients who had not yet begun treatment. This trial was the result of earlier research on ibrutinib which opened doors to new clinical research on this type of lymphoma.

“Mantle cell lymphoma is a type of non-Hodgkin lymphoma in need of better therapies and clinical trials testing new drugs are essential,” said Dr. Kouroukis. “Testing new therapies in lymphoma and other blood related cancers is an important goal for the hematologists at HHS.” There were, and still are, only two clinical trial sites using this particular therapy in Ontario—the one at HHS, and another at The Ottawa Hospital.

Catalyst: Can you share your experience in Dr. Kouroukis clinical trial?

“From the start, the health care team at HHS was fully invested in my care. The required tests were done quickly, I was accepted into the clinical trial, and I began treatment within two weeks of my first phone call with the Juravinski Cancer Centre. This kind of support began at my first appointment with Dr. Kouroukis. Sitting down in his office that day he said, “The first thing you need to know is that we have lots of time to talk.” After what I had been through—receiving my diagnosis over the phone, searching for solutions without support—as a patient, this was just what I needed to hear. He spent an hour explaining the trial, the drug, and my new care plan. Being given that amount of time, my sense of isolation was alleviated and I started to feel hopeful.”

Catalyst: Can you describe the requirements of the trial and the outcome?

“The trial required me, in addition to the usual six rounds of chemotherapy with bendamustine and rituximab, to take an oral cancer therapy drug called ibrutinib, which is a Bruton’s tyrosine kinase (BTK) inhibitor, meaning that it prevents the growth of malignant B cells by inhibiting this new pathway. My ongoing treatment plan is to take ibrutinib indefinitely as a maintenance therapy, but my cancer has been in remission since week 12 of the clinical trial.”

Gretta was recently able to attend a horse show—a favourite hobby that, a year ago, she would have not thought possible.
Gretta was recently able to attend a horse show—a favourite hobby that, a year ago, she would have not thought possible.   

Catalyst: Given your experience in clinical trials, how do you think health research contributes to the health of Ontario patients?

“I was diagnosed with a rare cancer, and given only years to live.  If it wasn’t for Dr. Kouroukis’s participation on this international clinical trial, I’m not sure that I would have found an alternative treatment. 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.”

As Gretta points out in her interview, clinical trials act as an important intermediate stage between research and better treatment for patients. They are a key pillar of Ontario’s research hospitals and a cornerstone of Ontario’s health research enterprise. Groups including the Canadian Clinical Trials Coordinating Centre (CCTCC) and Clinical Trials Ontario (CTO) are working to make Canada and Ontario a preferred destination for global clinical trials (see CTO’s video here) by streamlining information and improving access to those trials through new tools such as the Canadian Clinical Trials Asset Map. Health Canada offers a publicly accessible database, which may assist patients in finding clinical trials relevant to their medical condition.