A patient whose rare cancer had spread despite three operations has received ‘fairytale’ news of improvement in his condition, thanks to a cutting-edge trial running at Leicester Royal Infirmary.
Simon Robey, from Nottingham, was referred to the DETERMINE trial, at Leicester's Hope Cancer Trials Centre, after standard care treatments for his cancer of the parotid gland were exhausted.
Simon said: “These are the first results I’ve had from the trial and they show a major improvement. We kept hearing that it had moved, but now, it is reducing. It’s great news for me and for the trial.”
DETERMINE is a UK-wide trial for patients with rare cancers, or common cancers with a rare genetic change, where there is a medicine in existence that could target that genetic mutation.
The trial examines whether approved treatments that are currently only licenced to target a particular cancer site could also successfully target cancers originating from other parts of the body. Where success is proven, as defined by whether the tumour shrinks and patients live longer, positive results from the trial will be accelerated for Cancer Drug Fund Assessment and NHS approval for wider use.
Simon’s consultant oncologist, Olubukola “Bookie” Ayodele, explained: “In Mr Robey’s case, we found a mutation which is normally seen in breast cancer. Thanks to the trial, we’ve been able to give him a drug that would normally be used to treat breast cancer and the response has been phenomenal, even though this cancer originated in a different area of the body.
“He is the first patient to come through to this stage of the trial here in Leicester and what a result we’re seeing. It’s like a fairytale.”
Simon, who was diagnosed with cancer in 2018, said: “It started in my neck and I had lumps removed. Then it travelled to my armpit and other areas, including my breast.
"I had radiotherapy and pain management in Nottingham, but the doctors there were very open and honest and said they were surprised I had kept going for so long. But I’ve always stayed positive and never given up. Now, this treatment has pushed the cancer back.
“I’m here for two reasons – to get as well as I can and to play my part by giving back to the trial.”
Research Nurse, Molly Scotland, is UHL’s dedicated nurse for the DETERMINE trial. She said: “It’s wonderful being part of this breaking research. As well as caring for Simon at the centre, I’m here to support his family and have aimed to build a connection with Simon and his partner from day one.”
Simon said: “Molly has been a superb support. We know that we can contact her whenever we need to. She has been on the phone to me, checking how I am and monitoring me throughout.
"From Wendy in reception, to Molly, to Bookie, the support I’ve received from the trial team has been fantastic.”
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