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Clinical trials through the eyes of a patient

 

On Christmas Day 2019, Jules, 51, had to leave her family lunch early. She’d been feeling “out of whack” for months, experiencing fatigue and a change in her cognitive abilities at work, but was repeatedly told by GPs that “it’s just that time of life”.

On that day she was hardly able to eat and felt like she could collapse at any moment. When she went to her medical centre after this latest experience, she was finally able to get through to a doctor who believed her.

“I started off like I’m not feeling very well, this is what’s happening, do not tell me that it’s menopause or some midlife crisis, because that’s not me,” Jules says.

By early January 2020, after a series of scans and tests, Jules was diagnosed with metastatic melanoma. She didn’t return to work that year, turning all her focus to her treatment.

It was during an appointment with a surgeon at Peter MacCallum Cancer Centre that she first heard about a clinical trial which might benefit her.

“I had no reservations. I just trusted and had faith in the oncologist that I met and the surgeon,” Jules says. “I felt like I couldn’t breathe properly again until I’d passed the screening because I so desperately wanted to be on the trial and believed that it would work for me.”

Jules’ faith was justified. As a result of the neoadjuvant trial she was on, which tested the effectiveness of immunotherapy prior to surgery for melanoma, her tumour shrunk significantly, making a big difference in her ability to use the affected arm in the future.

“I had a very big response straight away, even on the first or second treatment. I could actually feel it.”

On top of the benefits of the treatment itself, Jules remembers feeling a lot of support from her clinical trial team during what was an overwhelming time.

“The trials team, everybody involved, they were fantastic,” she says. “Very empathetic, but also very knowledgeable.”

“There was safety and comfort in knowing that they were always there. Knowing that at any time I could reach out, and if there wasn’t someone from the trials team I still had a number for somebody at Peter Mac if I wasn’t sure. That was a really big thing.”

When asked if she has any advice for Victorians who are considering taking part in a clinical trial, Jules says to “definitely do it”.

“There’s nothing to lose. You’re only going to gain from it, because you’re getting a lot of the latest research and most up to date treatment.”

“Because there’s such an investment, you’re monitored a lot. You have a lot more tests and everything, but that means if there’s something there… I felt safer to be honest, on a trial. Because I thought it would get picked up a lot faster.”

And to those recently diagnosed with cancer, Jules says to “be kind to yourself.”

“Have faith and trust in the process and the clinicians,” she says. “You’ll feel like your life has blown up and you’ll get a lot of life admin, so when people offer to help – take the help.”

Learn more about cancer clinical trials in Victoria through the Victorian Cancer Trials Link (VCTL).

Cancer Connect

Our Cancer Connect program provides support for people considering participating in a clinical trial by connecting them with a trained volunteer who's had a similar experience.

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