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Two Adelaide fathers suffering from a rare neuroendocrine cancer are getting a new lease on life thanks to a revolutionary cancer treatment being trialled at The Queen Elizabeth Hospital (TQEH).
After first being diagnosed with carcinoid syndrome (a condition linked to neuroendocrine tumours) 14 years ago, Michael Button of Semaphore Park was the first neuroendocrine patient in the world to receive the new treatment.
The trial is being led by Professor Tim Price, head of oncology and clinical cancer research at TQEH and its research arm, the Basil Hetzel Institute for Translational Health Research (BHI).
It involves a chemical red dye – known as Rose Bengal – being injected directly into the patient’s tumour. The dye has been found to regress tumours in melanoma patients and is now being tested on other cancers.
“The Rose Bengal treatment is aimed at stimulating the immune system to help the body fight the tumour,” Prof Price said.
“A radiologist uses an ultrasound to identify a lesion in the liver, then with a needle they inject the Rose Bengal into the same lesion under local anaesthetic.”
Carcinoid tumour can be caused by neuroendocrine tumours that produce too much serotonin. The syndrome has a range of uncomfortable day-to-day symptoms like diarrhea, abdominal cramps, shortness of breath and flushing.
For Michael, whose quality of life was gradually worsening, two treatments of Rose Bengal dye in 2017 and another in 2018 has significantly improved his outlook.
“My tumour is stable now, it’s stopped growing,” Michael said. “I’m definitely better than I was and have been able to put on weight.”
With the wedding of his daughter Emily in May 2018, being healthy enough to walk her down the aisle was a huge priority.
“When Tim first told me about it and asked if I’d be willing to trial it, I jumped at the chance. Anything to find a cure and feel better,” he said.
“Neuroendocrine cancer affects the heart valves, so I’ve had three heart valves replaced, which was pretty scary for my family.
“(But) my daughter’s wedding day went off without a hitch!”
Someone else who is very grateful to trial this new treatment is Modbury North grandfather Robert Ellis, whose carcinoid tumour was first found 12 years ago on New Year’s Eve. After suddenly falling ill, he was undergoing emergency surgery for a suspected twisted bowel when a pathologist was surprised to see the tumour.
“The pathologist had never seen a carcinoid tumour in a live patient before,” Robert said.
To manage the day-to-day impacts of the syndrome – and allow him to keep up with his much-loved grandkids – Robert was having chemical injections every 21 days.
“I had 216 of these before Tim decided I was special enough to trial Bengal Rose!” he joked. “It worked really well, the symptoms are diminishing in their severity.”
In a further positive sign, Robert may even be benefitting from the ‘bystander’ effect.
“Instead of it just fighting the carcinoid tumour in the local area, it is spreading to fight the other tumours too. At my next gallium scan, which maps out where the tumours are, for the first time we saw a reduction.”
The trials are ongoing, with Rose Bengal having the potential to be used to treat other stomach, lung and breast cancers.
Clinical trials are only possible when the research conducted in the lab has progressed to a stage where it can truly impact a patient’s life. It’s thanks to the kind support of our donors that we can provide funding for these types of trials, making a difference for patients like Michael and Robert who are living with heartbreaking diseases.
Your support will help progress these trials sooner! Donate today: https://www.hospitalresearch.com.au/donate/