“It’s tough. When they say, ‘Submit all the forms and we’ll get back to you in six weeks,’ it’s like, ‘OK, well, I might only have four months.’”
Published Nov 18, 2023 • Last updated 14 hours ago • 4 minute read
Sindy Hooper has Stage 4 pancreatic cancer and has been told she has approximately four months to live. Hooper is desperately racing to find a U.S. clinical trial that will take her as a patient. Photo by Ashley Fraser /POSTMEDIA
Ottawa’s Sindy Hooper is in a new, desperate race.
An accomplished Ironman competitor and triathlete, Hooper, 60, is now living with terminal (stage 4) pancreatic cancer. She has tried four different types of chemotherapy, but they’re no longer stopping the spread of her disease.
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Doctors have told her she has four months to live.
So Hooper is now trying to find a way to get into a clinical trial in the United States, where researchers are testing new drugs and combination therapies that have shown great promise in halting the spread of pancreatic cancer. The new drugs target mutant KRAS-G12D proteins made by an altered KRAS gene.
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Hooper has this altered version of the KRAS gene, which drives more than 35 per cent of all pancreatic cancer cases. This past week, she made a public appeal on Facebook, asking for help in getting into one of the U.S. trials.
“Sending lots of emails and phone calls, but it seems like there are so many hurdles. Time is ticking,” she wrote.
In an interview, Hooper said it had been an immense challenge to gain admittance to one of the new clinical trials. “They are very difficult to get into. There are a lot of people trying to get in and there are long waiting lists.”
Many of them are early-phase clinical trials. “But that’s all we have,” Hooper said.
Just applying to have her medical file assessed to determine if she would be eligible to join a clinical trial can cost up to $17,000 U.S., she said. “And there’s still no guarantee of getting into the trial. They can come back and say, ‘You’re a good candidate, but we don’t have any more room in our trial.’”
Sindy Hooper is trying to find a U.S. clinical trial that will accept her, but says, “They are very difficult to get into. There are a lot of people trying to get in and there are long waiting lists.” Photo by Ashley Fraser /POSTMEDIA
There’s no central registry in which to apply for the clinical trials, Hooper said, which means each application costs more money.
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“It’s tough,” she said. “When they say, ‘Submit all the forms and we’ll get back to you in six weeks,’ it’s like, ‘OK, well, I might only have four months.’”
There are clinical trials for pancreatic cancer treatments in Canada, but they don’t target Hooper’s advanced stage of disease.
Hooper was first diagnosed with pancreatic cancer 11 year ago. Last September, she learned the disease had spread to her lung, spine and rib, which meant the only treatment available to her was palliative chemotherapy.
That news only accelerated her remarkable fundraising efforts. Since her initial diagnosis, Hooper has raised more than $500,000 for pancreatic cancer research. Most of that money — about $450,000 — has gone to research at The Ottawa Hospital.
Last week, Hooper was honoured by the Ottawa chapter of the Association of Fundraising Professionals with its 2023 Inspiration Award at a gala dinner.
“It really recognizes, not only myself, but all of the people who have supported me over the last 10 years,” said Hooper, a former human resources manager at The Ottawa Hospital. “What I’ve achieved wouldn’t have been possible by myself. It really required the help of a lot of people: my family, friends and the community at large.”
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Hooper was training to compete in an Ironman competition in December 2012, when she began to experience pain in her back and abdomen. Her skin became itchy and she felt unusually tired. The following month, an ultrasound revealed a tumour in her pancreas, the organ that makes digestive enzymes and hormones that help control blood sugar.
Hooper had none of the common risk factors associated with the disease — diabetes, smoking, obesity — and no family history of cancer.
Sindy Hooper with her husband, Jon, and their dog Lexey. Photo by Ashley Fraser /Postmedia
Those diagnosed with pancreatic cancer survive for an average of six months since the disease is usually in an advanced state by the time it’s discovered. Most patients — 75 per cent — will die within the first year. The five-year survival rate is just 10 per cent.
Hooper was among the minority of pancreatic cancer patients eligible for Whipple surgery. She underwent that 10-hour procedure, in which surgeons removed half her pancreas and stomach, part of her small intestine and her gallbladder, and lost 18 pounds. Five weeks after surgery, though, she resumed her endurance training.
During the next decade, Hooper completed two Ironman races and 15 triathlons, including world championships in Mexico and Switzerland. She completed both the Ottawa Marathon (2014) and Boston Marathon (2015).
Hooper says she is now taking things “day-to-day.” She is on a new chemotherapy drug and must regularly have fluid drained from her left lung.
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