A life-saving rare disease trial
Stuart Robinson was on a holiday in late 2011 with a bad cold. When he got home, he felt a lump in his neck and thought it was swollen lymph nodes connected to his cold. Later, the lump was still there. Doctors in his hometown of Adelaide initially thought he had a small cell cancer of unknown origin, and he underwent chemotherapy and radiation. When the treatment didn’t work, a more in-depth pathological investigation found he had medullary thyroid carcinoma (MTC), a rare form of thyroid cancer. MTC makes up six per cent of all thyroid cases. It is estimated there are only around 60 to 100 people in Australia with the disease. With limited treatment options, Stuart’s wife Jenny began researching, and in a social media group for sufferers in the US, discovered there was a clinical trial for a drug which was heading to Royal North Shore Hospital. The cancer produces a chemical in the blood called calcitonin. By measuring calcitonin, it is possible to tell how active the cancer is. By the time Stuart joined the trial in May 2018, his calcitonin levels were at 7000 pg/mL, and the cancer was spreading. The trial involved taking a pill twice a day that contained a molecule targeting the mutated cells causing the cancer. Within three weeks, Stuart’s calcitonin levels plummeted from 7000 pg/mL to 40 pg/mL. The drug had effectively deactivated the mutant cells, offering Stuart a new lease on life.
“I often say I was unlucky to get cancer, but I was unbelievably lucky this trial came to Australia in 2018 just when mine was starting to take off,” he says. Being on a trial meant he was closely monitored throughout the process. While it has ended, he is now part of an ongoing monitoring program, travelling to Sydney every three months to see Dr Rory Clifton-Bligh, Dr Bruce Robinson and Clinical Trials Coordinator Rhonda Siddall. “They’re very generous with their time and I feel like I’m their only patient,” he says. Stuart says there are side effects such as dry mouth and upset stomach, but he has stuck with it. “We still lead an active life, and it is 12 years now since I first felt the lump in my neck. I’m very happy.”
Stuart Robinson
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