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Finding community through clinical trials

When Jennifer’s oncologist first spoke to her about joining a clinical trial, she was scared this was the last chance they had at treating her metastatic melanoma.

‘I just thought, that’s my last roll of the dice,’ she says. ‘My main fear was, is this going to work? But nobody knows the answer to that until we try.’

Jennifer had been diagnosed with melanoma when she was 30 years old, and in the roughly 20 years since had been treating recurrences in her brain, her lung and her lymph nodes through multiple surgeries and targeted drug therapy.

Despite all this, her oncologist told her the cancer was coming back faster each time and suggested it was time to try something new. The trial they recommended was testing the efficacy of immunotherapy to help shrink tumours and decrease the risk of the melanoma coming back.

Jennifer says that despite her initial fears she completely trusted her oncologist and followed her gut feeling to give the trial a go, and her fortnightly infusions soon became something she looked forward to.

‘That first walk-in was scary, but it very quickly became a second home,’ she says. ‘When it finished, I kind of missed it. I missed the company and the understanding of the other people.’

 Jennifer during treatment with her daughter Elly

Jennifer says the clinical trial ended up becoming a safe space for her, with people who could understand her struggles and relate to her experience. While she wanted to stay strong for her family and friends, she felt a sense of relief at not having to put up a front when she went in for her treatments.

‘Being supported by people who understand is the best form of support you can get,’ she says. ‘You’ve got arms wrapped around you from all other places; a support system which helps carry you along that journey.’

It’s been almost 10 years since the clinical trial, and Jennifer says the immunotherapy treatment was a ‘lifesaver’. She had a few side effects along the way linked to previous treatments, but the team was able to work around it and she’s been in the clear ever since.

 Jennifer and her daughter Elly now

If she does have a recurrence in the future, Jennifer says she wouldn’t hesitate to explore clinical trials again. ‘I can’t see any negative about any trial whatsoever,’ she says. ‘You’ve just got to try it, and if it’s not the one for you, well then you know you can try something else.’

When first considering joining the trial, Jennifer hadn’t felt she had people outside of her treatment team to talk to. Feeling a pull to give back, she’s since become a volunteer for Cancer Council Victoria’s Cancer Connect program, where she draws on her own experience with cancer to support people going through it now.

The confidential phone support service links people with trained volunteers who have had a similar cancer experience in terms of cancer type, cancer treatment, age or whether they’ve been on a clinical trial. Through the program, Jennifer enjoys helping people find their new normal and putting their nerves at ease by sharing her story.

‘I can’t recommend it highly enough,’ she says. ‘Having the support of people in Cancer Connect like myself, it’s like I’m one of those arms now to wrap around other people to help them through.’

These days, Jennifer feels blessed to have been part of a clinical trial and to be able to help others. She’s living a healthy and happy life, with biannual scans and regular skin checks to keep an eye on any future recurrences.

When speaking to people considering taking part in a clinical trial, she says ‘it’s a no brainer’ and encourages people to do their research, whether that’s through speaking to their oncologist, hearing from other people who’ve been on a trial like herself, or through resources like the Victorian Cancer Trials Link.

‘I just think nowadays, especially with how far we’ve come in the world of cancer treatment, I think that if you get on a trial you’re pretty lucky,’ she says.

Victorian Cancer Trials Link

The Victorian Cancer Trials Link (VCTL) connects people affected by cancer with information about current cancer clinical trials in the state.

It has a range of information and resources to help you understand how clinical trials work and allows you to easily search for current trials to discuss with your doctor.

Visit VCTL

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