Guy's view

Guy's view

5 April 2017

Being diagnosed with uveal melanoma at age 52 was not something Guy Winship could ever imagine happening to him. Now facing a Stage IV melanoma diagnosis, Guy’s only hope of spending more time with his family is being on a new clinical trial at Melanoma Institute Australia (MIA).

“This whole experience has been somewhat surreal,” says Guy. “I didn't even know there was such a thing as eye cancer - I'd never heard of it!”

In September 2013, Guy presented to his GP with blurred vision in his left eye that had persisted, without pain, for a week. His GP thought his retina had detached and he was sent to the Sydney Eye Hospital.

At the Sydney Eye Hospital, Guy was told that there was a mass behind his eye. He was referred to ophthalmologist Dr Michael Giblin and underwent enucleation under a local anaesthetic.

“I regret having a local anaesthetic!” laughs Guy – an incredibly positive and optimistic man. “Although my physical recovery time was minimal, I’ve been emotionally scarred from the experience!”

Living with one eye has been an adjustment, but he’s learned to adapt to the changes quite well, and has a good sense of humour about it.

“My car has scratches all over it!” comments Guy. “In the beginning, I found it really hard to pour water into a glass. It’s such a simple task, but I’d end up with water everywhere! But you learn to adapt. I tend to move my head more now to get more information in. And I’ve learned to touch the top of the glass when pouring water.”

A year after his enucleation, Guy received the news from his oncologist, A/Prof Alex Guminski, that he had been dreading. The melanoma had metastasized. It presented in his liver, which is typical of uveal melanoma, plus his bones and joints.

“I was told to get my affairs in order and he gave me 12 months to live,” recalls Guy. “Going home and telling my kids – then 15 and 11 years old – was incredibly hard. It’s been hard on them, and my wife too.”

“Facing your own mortality is a very sobering experience. I’m a very positive person but you definitely have your dark periods.”

Guy has undergone a number of treatments to buy him time, including transarterial chemotherapy where a catheter delivers chemotherapy directly into the artery that feeds the liver. When this failed, his oncologist treated him with an immunotherapy, ipilimumab (Yervoy®). After suffering severe side effects, like losing the use of his pituitary and thyroid glands, he was put on another immunotherapy, pembrolizumab (Keytruda®). Again, severe side effects – this time pneumonitis – caused Guy to come off the treatment.

“Tumours in my liver over the last year have been largely stable, thanks to the immunotherapies, although there has been a spread to the lungs and peritoneum,” says Guy. “But I can’t continue on the treatments because of the side effects.”

Running out of options, Guy’s oncologist suggested that he participate in a new clinical trial being run at MIA. Guy has been on the Phase I trial testing the compound LXS196 since November. This is a new therapy that specifically targets gene mutations found in uveal melanoma.

It is still early days, but Guy’s tumours have stabilised. He does have a number of side effects again, most notably a rash all over his body, but it is being managed.

“This research is a chance for me to live, to survive,” says Guy. “It's as simple and straightforward as that. This is the only realistic option I have of beating this cancer and surviving longer. So I'll do whatever it takes.”

“It would be great if I could see my kids finish high-school. That would be really nice. I've got 5 years to go. If I can hang on, that'd be great.”

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