Patient stories / 20 May, 2020

Finding hope through clinical trials

Icon Writers

This International Clinical Trials Day, Maree shares how her life has changed through clinical trials

60-year-old Ballina local Maree Smeal was first diagnosed with liver cancer following an appendectomy in June 2017. Although scans found a 2.2 cm lesion on her liver, Maree was told this was benign and didn’t require any further treatment. It was after seeing her GP later in the year for an unrelated issue that Maree was referred to a specialist for further scans, which indicated that the tumour in her liver had grown significantly in size to 10.5 cm and her AFP levels had skyrocketed.

“I was diagnosed with hepatocellular carcinoma (HCC). I was in shock, as prior to this I had always been really healthy, fit and active. There was no history of cancer in my family.”

In November 2017, Maree had 60% of her liver removed as well as her gallbladder and was told that her cancer appeared to be confined to her liver. Just a few months later in January 2018, Maree’s cancer was found in her lungs and she was given a new diagnosis – Stage IV HCC.

“It was devastating. I was referred to my local oncologist who said my long term prospects were very poor. My only course of action was to take the standard treatment to give me some more time.”

“The side effects from this treatment were debilitating and I experienced all but one of the common symptoms, from severe diarrhoea, hand foot syndrome, extreme fatigue and mouth ulcers through to ongoing thyroid issues. It was so painful to walk that I had to use a wheelchair. I was in complete agony and living day-to-day with a terrible quality of life. But I still continued, because I wanted to live. I had so much to live for.”

Throughout this time Maree continued to look for other treatment options. After a consultation with an Icon oncologist who confirmed she was on the right course of treatment, Maree began investigating immunotherapy and genomic profiling.

“I discussed immunotherapy with a medical oncologist at Icon Cancer Centre South Brisbane, but unfortunately I didn’t meet the criteria for any clinical trials that were running at the time. I had to try and stick with my medication; even though it was causing such debilitating side effects, there was nothing more I could do.”

Maree says that one of her most difficult experiences was in July 2019, when she learned the standard treatment was no longer effective and her cancer had started increasing in size and spreading. She still refused to give up hope.

“I went back to Icon South Brisbane and was told that there were some clinical trials that had begun which I may qualify for. It was a really scary time, as I had to have a seven week wash-out period of all drugs and supplements. Stopping those meant I knew the cancer would continue increasing.”

Just one month later, Maree began a two-year phase 1 clinical trial of an innovative new therapy at Icon and now attends the centre every fortnight for that treatment. Phase 1 clinical trials test new treatments that have not been used in people before and are particularly valuable for people when standard or approved therapies are no longer effective. By participating in a clinical trial, patients such as Maree have the opportunity to access a potentially lifesaving treatment and help advance cancer treatment for all Australians and across the world.

Although Maree doesn’t know what’s going to happen in the future, participating in a phase 1 clinical trial has been a really positive experience.

“When I was told I was suitable for a clinical trial, I was over the moon. It gave me hope that I had been given a chance, since I didn’t have any other way forward.”

“This opportunity has helped me get my life back and changed my outlook. My tumours have decreased in size and the majority of my side effects have virtually disappeared. I truly can’t believe I am still here, and without research I wouldn’t have had the chance. Now I can look to the future.”

Maree says that having a great support system helped her keep going when times were tough.

“The team at Icon have all been so professional, supportive, happy and helpful. It really makes me feel at ease and that I’m being well looked after. I have total faith that they put my wellbeing first and foremost. Especially during COVID-19, it’s been quite scary to leave the house but Icon have made us feel really comfortable and put measures in place to protect the health of patients and staff.”

Looking back on her journey, Maree encourages people with cancer who may be looking at clinical trials to explore every opportunity.

“Don’t just accept one person’s advice. If it means the chance for a longer life, explore absolutely every avenue you can and don’t be afraid to ask lots of questions.”

“Clinical trials have been life-changing for me.”

 

Icon proudly offers Australia’s largest private cancer clinical trials program, providing hope and opportunity for cancer patients to access new treatments and helping us to improve cancer care for people now and into the future. It is these trials and the doctors and patients involved today, that advance the way we can treat cancer tomorrow. For more information on clinical trials at Icon, click here.

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