Sheffield woman who lost both parents to brain tumour backs cannabis-based drug trial

A Sheffield woman who tragically lost both of her parents to brain tumour is backing a new appeal to fund the world’s first major trial to see if a cannabis-based drug could help give patients more time to live.
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The trial, to be funded by The Brain Tumour Charity, is to launch at 15 NHS hospitals to assess whether adding Sativex, an oral spray containing cannabinoids THC and CBD, to chemotherapy patients could extend life for thousands of people who are diagnosed with a recurrent glioblastoma brain tumour that currently has an average survival of just 10 months.

Esme Tuttiett, 26, as well as her brothers Mark, 30 and James, 32, lost both of their parents to Glioblastoma brain tumours – one of the most aggressive tumour types – over the course of their young lives.

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She was just six years old when their mum, Alison, died of a Grade 4 Glioblastoma. She was 22 when her dad Neil was diagnosed with exactly the same tumour type and he was given just three months to live.

Esme Tuttiett, 26, from Sheffield as well as her brothers Mark, 30 and James, 32, lost both of their parents to Glioblastoma brain tumours over the course of their young lives.Esme Tuttiett, 26, from Sheffield as well as her brothers Mark, 30 and James, 32, lost both of their parents to Glioblastoma brain tumours over the course of their young lives.
Esme Tuttiett, 26, from Sheffield as well as her brothers Mark, 30 and James, 32, lost both of their parents to Glioblastoma brain tumours over the course of their young lives.

Esme said: “I was so young when mum was unwell – I often struggle to separate what are my actual memories of her and which are stories which people have told me. I know that there were fond times listening to nursery rhymes in the car together or playing outside in the summer.

“As a young girl, I struggled to understand that she wouldn’t be coming back, no matter how many times dad tried his best to explain it to us all.”

It was years later that Esme’s dad Neil began to show some warning signs, such as muddled speech. The family initially put it down to stress as he juggled his job as a headteacher with looking after the three children. But when things got progressively worse, a CT scan followed by a biopsy confirmed that Neil also had a Grade four Glioblastoma, just like his late wife.

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“After getting the biopsy results, dad walked into the room, looked at me and just shook his head. My world came crashing down all over again. Because of what has happened to us in the past, we were probably more aware of these things than other families so we did expect the worst. History was repeating itself in the worst possible way,” said Esme.

Esme on her first birthday with her brothers and her late mum, Alison who died of a Grade 4 Glioblastoma when she turned six.Esme on her first birthday with her brothers and her late mum, Alison who died of a Grade 4 Glioblastoma when she turned six.
Esme on her first birthday with her brothers and her late mum, Alison who died of a Grade 4 Glioblastoma when she turned six.
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She said their father’s condition worsened every day and he died at home just six weeks after his diagnosis.

“We were not prepared for such a rapid decline – he wanted to die in a hospice but we hadn’t even been able to secure a bed in time for him. He also lost the use of his hands so he was unable to write us all letters for us to read on our wedding days which he had so wanted to do. But we did all that we could do make those last few weeks the best that we possibly could,” she added.

The family have since supported The Brain Tumour Charity, including raising over £17,500.

Esme and her dad, Neil on her graduation day in 2017.Esme and her dad, Neil on her graduation day in 2017.
Esme and her dad, Neil on her graduation day in 2017.
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Esme added: “Brain tumours are incredibly unforgiving – no one should have to go through what we have endured as a family. Research into brain tumours is incredibly vital yet severely underfunded so the need for this trial can’t be denied.

"I am currently studying my own PhD so I hold research, and its significance, in high esteem. I have witnessed and lived through the horrible and negative impact Glioblastoma brain tumours cause so, if there could be a way to reduce the unpleasant side-effects and also extend survival rates then I am in full support.”

Dr David Jenkinson, interim CEO at The Brain Tumour Charity, which is funding the trial, said: “We hope this trial could pave the way for a long-awaited new lifeline that could help offer glioblastoma patients precious extra months to live and make memories with their loved ones.

"With so few treatments available and average survival still so heartbreakingly short, thousands affected by a glioblastoma in the UK each year are in urgent need of new options and new hope.

Esme Tuttiett, 26, her brothers Mark, 30 and James, 32 with their late father, Neil.Esme Tuttiett, 26, her brothers Mark, 30 and James, 32 with their late father, Neil.
Esme Tuttiett, 26, her brothers Mark, 30 and James, 32 with their late father, Neil.
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“We know there is significant interest about the potential activity of cannabinoids in treating glioblastomas, and we’re really excited that this world-first trial here in the UK could help accelerate these answers. But we also know that for many, like the Tuttiett family, this trial won’t come soon enough.

"In the meantime, while other cannabis-based products may help alleviate symptoms, there is insufficient evidence to recommend their use to help treat brain tumours. For anyone considering using cannabis-based products or other complementary therapies, it’s vital that you discuss these with your medical team first.”

Sativex, which is already used in treating multiple sclerosis, was found to be tolerable in combination with chemotherapy, with the potential to extend survival, in a phase one trial in glioblastomas earlier this year.

While the phase one study observed that more patients were alive after one year in the Sativex arm of research compared to those who were given a placebo instead, the study was not sufficient to show survival impact. Experts hope that, should the trial prove successful, Sativex could represent one of the first additions to NHS treatment for glioblastoma patients since temozolomide chemotherapy in 2007.

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The new three-year phase two ARISTOCRAT trial is to be led by principal investigator Professor Susan Short, professor of clinical oncology and neuro-oncology at the University of Leeds.

Glioblastomas are the most common and most aggressive form of brain cancer, with around 2,200 people diagnosed each year in England alone.

The Brain Tumour Charity, which is the largest dedicated funder of brain tumour research globally, has now launched an appeal to raise the £450,000 needed so it can open the trial as soon as possible.

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