Northwich family support ‘world-first’ UK trial of cannabis-based drug in aggressive brain tumours

A daughter who lost her dad to one of the most aggressive forms of 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.

Siobhan Manton, 28, from Northwich in Cheshire, lost her dad John to a Glioblastoma brain tumour earlier this year after he was first diagnosed in 2018. Despite several rounds of gruelling treatment, he left behind his partner Yvonne, Siobhan and her brother Callum, 25, when he was just 59-years-old.

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 could extend life for thousands of people who are diagnosed with a recurrent glioblastoma brain tumour. This tumour type currently has an average survival of just 10 months¹. This would be a phase II trial to follow promising results from a phase I study earlier this year which looked at its effect in 27 patients.

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. It is hoped the trial can begin recruiting over 230 patients across the UK in early 2022, subject to the required funding being raised.

Siobhan’s dad, John, first began having symptoms of the brain tumour in May 2018 when he heard music in his head and began to slur his words. Worried that he had a stroke, Siobhan took her dad to hospital but they only got as far as the end of the road before John had a seizure. A CT scan and blood tests came back clear but John used the private healthcare which he had through his work to have a MRI scan – which found the grape-sized tumour.

John soon had surgery which successfully removed all of the tumour - but the family’s elation was short-lived. Tests revealed that the tumour was an aggressive Glioblastoma and John was given just six – 18 months to live.

Siobhan said: “Dad always had a positive mindset and so he was determined to fight the tumour. We would all be feeling sorry for ourselves and worrying about what time we had left with him but Dad would just say “These are the cards I’ve been dealt and I’ve got to carry on with what’s been given to me.” He never once complained about anything – he just carried on with life as much as he could.”

John had courses of radiotherapy and chemotherapy and, a few months later, an all-clear scan showed that the treatment had been successful – and scans continued to be clear for a year. Yet, all that changed in October 2019 when nodules around the original tumour site meant another course of chemotherapy. A further scan in January 2020 sadly revealed that the tumour had grown again so John continued with chemotherapy as well as another round of radiotherapy.

In April, during the first Lockdown, John’s condition worsened and the family were told that the treatment hadn’t worked as the tumour continued to grow. An alternative chemotherapy drug was given but the tumour still continued to grow. John also started showing more symptoms of the tumour including dragging his foot when he walked, his face was increasingly swollen, he struggled to get words out and he was increasingly forgetful.

Over the following months, John got increasingly unwell as the tumour grew rapidly and, in November, the family were told that John had just a few months left to live. He passed away on 12 February 2021.

Siobhan said “It was when Dad became really poorly that I began to struggle. We knew Dad dying was coming – it was just a terrible case of when. He wasn’t able to speak much but, one day at the hospice, he said “Love you” which were then the last words he said to me.

“During that time, I would wake up every day thinking “is it going to be today?” But nothing can prepare you for that moment – you think you have prepared yourself for it but it’s impossible. Dad fought until the very end. It is still very raw for us at the moment and we miss him every day. The memories I have of my Dad are always happy ones. He was full of life, loved spending time with friends and family and his brain tumour diagnosis didn’t change this either.”

The Manton family have been supporting The Brain Tumour Charity since John’s diagnosis and have raised more than £23,000 through challenge events and following a donation from John’s former employer, Barclay’s Bank. Siobhan hopes that a trial such as this one could stop other families from being torn apart in a similar way to her own.

She added: “I had read so much about other cancer types but nothing about brain tumours or Glioblastomas – that’s not OK and we need to raise their profile more. So many people are diagnosed and die weeks later and we were incredibly lucky to get two and a half years with Dad. But his treatment options were so poor and we tried everything but nothing worked to keep Dad with us for longer than he did.

“I would say to anyone thinking of donating to this trial that their support has the real potential to have a massive impact on so many people’s lives. Even if this trial just changes things for one person then it would be worth it. Please donate whatever you can to help people like my amazing dad.”

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.

“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 Manton 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 I trial in glioblastomas earlier this year.

While the phase I 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.

The new three-year phase II ARISTOCRAT trial is to be led by Principal Investigator, Professor Susan Short, Professor of Clinical Oncology and Neuro-Oncology at the University of Leeds.

“The treatment of glioblastomas remains extremely challenging. Even with surgery, radiotherapy and chemotherapy, nearly all of these brain tumours re-grow within a year, and unfortunately there are very few options for patients once this occurs.

“Cannabinoids have well-described effects in the brain and there has been a lot of interest in their use across different cancers for a long time now. Glioblastoma brain tumours have been shown to have receptors to cannabinoids on their cell surfaces, and laboratory studies on glioblastoma cells have shown these drugs may slow tumour growth and work particularly well when used with temozolomide.  

“It’s really exciting that we’re now at the point where we can run a definitive, well-designed study that will tell us the answer to whether these agents could help treat the most aggressive form of brain tumour. Having recently shown that a specific cannabinoid combination given by oral spray could be safely added to temozolomide chemotherapy, we’re really excited to build on these findings to assess whether this drug could help glioblastoma patients live longer in a major randomised trial.”

Glioblastomas are the most common and most aggressive form of brain cancer, with around 2,200 people diagnosed each year in England alone³. They are usually fast-growing and diffuse, with poorly-defined boundaries and thread-like tendrils that extend into other parts of the brain.

Almost all glioblastomas recur even after intensive treatment including surgery, radiotherapy and chemotherapy, and average survival is just 12-18 months from first diagnosis.

Over the last decade, there has been significant global interest within both patient and scientific communities about the activity of cannabinoids in brain tumours, with the view that cannabinoid-based products may not only help relieve symptoms but could also have a positive impact on survival.

For more information or to donate to the trial visit:

https://www.thebraintumourcharity.org/donate/cannabinoid-appeal/