Hope’s Path XXVI: Undergoing clinical trials while sitting in the lap of luxury

Mary Buie has been making the most of her time in Toronto, including a trip with daughter Jenn and son Neil to the Bata Shoe Museum.

EDITOR’S NOTE: In 2013 retired nurse and midwife Mary Buie approached The Expositor with a mission. She had recently been diagnosed with breast cancer and was wondering whether this newspaper would be interested in following her journey as she battled the disease. It was with some trepidation that this paper agreed as the eventual outcome was far from certain to be positive. What followed was an engaging series that leavened a very serious health issue with Ms. Buie’s irrepressible personality. Ms. Buie recently informed The Expositor that she would once again be facing down cancer. The Expositor continues the series ‘Following Hope’s Path’ to relay the ongoing story of her journey.

TORONTO – Mary Buie is on top of the world these days. Not only is the retired nurse and cancer survivor undergoing a clinical trial to combat the aggressive cancer that has refused to respond to traditional treatment, she has found herself “living in the lap of luxury” with all expenses paid for her and her family at Toronto’s Chelsea Hotel.

“It is amazing how God works,” she said. Ms. Buie explained how, due to COVID, the normal accommodation for patients in the clinical trial are not available. “So my family gets to stay here with me, all expenses paid,” she said. “All of our travel expenses are covered as well.”

Ms. Buie has been taking full advantage of her time in the Big Smoke, with educational trips to the Bata Shoe Museum and other sights and sounds that are far less crowded these days than pre-pandemic.

“I expected the shoe museum to be in an old building,” she said. “Far from it, it’s a new building shaped like a shoebox.”

Much of Ms. Buie’s day is spent communicating with friends and family. “There is nothing that gives me greater joy,” she said. As her son Rob lives in nearby Lindsay, she has been able to stay with him between visits to Toronto’s Princess Margaret Hospital (PMH) where the trial centre is located. “I get to see my grandchildren, and my son Neil and daughter Jenn have been able to come visit me. Jenn stayed with me the first night of my trial. It has been wonderful.”

She and her daughter found a delightful Thai restaurant between PMH and the Chelsea Hotel and met the owner Nathan, who cooked a meal especially for them. Another fascinating experience was going to a restaurant where the meal is eaten in complete darkness.

“You order your meal in the light before you go in,” she said. “Then you are guided to your table by visually impaired servers.” She noted that they felt a little queasy dining in the dark at first, but soon got over it. “You could hear that the other diners were experiencing some of the same thing,” she said.

When it came to the business at hand, the clinical trials that she was there to take part in, Ms. Buie explained that, “most research starts in the lab and then involves animals such as mice. If results look good then a clinical trial begins. A clinical trial is a research study that involves people who have volunteered. My trial is a treatment trial, testing a new experimental drug AMG 650 that is in pill form and is taken once a day. There is more and more emphasis on cancer treatment in pill form which is easier to manage.”

Ms. Buie is in a phase one trial to discover how safe the treatment is and the best dosage to be taken. “This phase may be riskier than other phases as this is a new therapy being tested by people,” she said. “But one of my favourite family mottos is ‘you have to risk to achieve.’ Phase one is therefore with a small number of people—40 in my trial with 10 in each group of four hard to treat cancers. I was the last one in my TNBC group as the trial, which is global, started in 2020. I am in a good position as they have already determined the safe dosage to take.”

Each trial has a lead research doctor and a team of nurses, pharmacists, technicians and doctors, she notes. “I am managed by a clinical research nurse co-ordinator as each trial has very specific procedures and study visits, so I go weekly to PMH for the first month then less often for six months,” said Ms. Buie. “Each time I do routine bloodwork and research-related blood tests, as well as urine tests at times to see how the drug is excreted. I have electro-cardiograms to see how my heart is doing, a physical exam by a doctor and a review of my usual medication and side effects review. I have to keep a drug diary of when I take it—same time every day—where I list any side effects I have experienced.”

Ms. Buie said she was “thrilled” when she heard the trial was global. “It originated in the US through the drug company AMGEN and PMH is the only Canadian research centre taking part,” she said. The trials are also being conducted in Italy, Spain, Belgium, Japan and Australia.

Faith has guided much of Mary Buie’s journey. She continues to attend services at Little Britain United Church in Lindsay while she stays with her son Rob.

“I will have a CT scan every two months to see how my cancer tumours are responding as AMG 650’s job is to stop the cancer cells from dividing so fast,” she said. “The desire in cancer research is to find pills that will be effective as treatment is much more manageable this way.

For all of us who have cancer and have to travel far to PMH, all of our expenses apart from food are covered. Before COVID we would have stayed at the Princess Margaret Lodge but now our hotel or living accommodation is reimbursed as well as travel by any means needed, so we are not out of pocket.”

Ms. Buie’s treatment began on her birthday. “I have had the best birthday I have had for years because, as well as starting the trial, I was also staying before and after in a posh hotel, all expenses paid, and had Jen and Neil with me there for the weekend. I had wanted to go down to the big city for years and was now doing it. Mixing business with pleasure. I find Toronto exciting.”

Ms. Buie said that she has always enjoyed excitement and learning new things, so the experience has truly been a Godsend.

Just beginning the trials was an important boost to her mental health, she added. “The terrible part of waiting when you have completed your treatment and the cancer within you is not responding is very hard,” she admitted. “When any of us start a treatment, it is so much better to have something happening.”

She attends church regularly at Little Britain United Church, where she has gotten to know many of the parishioners during her visits—they even provided her with a prayer quilt. “The service is at 10:30,” she said. “I have to take my pill at the same time every day, so I bring the pill and my water with me.” She must refrain from eating for two hours before taking her pill and for an hour afterward as well.

Ms. Buie said that being at PMH is an eye-opener. “You see so many people who are in tough situations,” she said. “I like people, so I spend a lot of my time talking to people and trying to make them feel a little bit better.”

Ms. Buie offers up this bit of advice to the many people facing health challenges in these most trying of times. “Let your faith be stronger than your fear.”