Peterborough woman supports campaign for cannabis-based drug to be used to treat patients with brain tumours after dad’s death

Courtney Whitwell, 24, from Peterborough lost her dad Andrew to a Glioblastoma in 2019 which was diagnosed with after he had a seizure whilst using an exercise bike.

In the weeks leading up to the first seizure, Andrew had been having daily headaches and he had also been experiencing an unusual smell of metal. He blacked out and broke his shoulder when he fell off the exercise bike but he didn’t have an MRI scan until he had another seizure the following month – which revealed the tumour.

Now The Brain Tumour Charity , is to launch a new trial 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 months.

Andrew was diagnosed with a Grade 4 Glioblastoma and he soon had surgery which removed most of it. He then had radiotherapy and oral chemotherapy. He was tired and lost some hair during his treatment but he still managed to spend quality time with his family, including a day punting in Cambridge.

Courtney said: “We knew that Dad hadn’t been well but it was only after he was diagnosed that we realised why he looked that way – it was the cancer attacking his body. After his diagnosis, Dad lost so much of his life and his independence.

“My whole life was also shattered. I tried my hardest not to get upset in front of Dad because I didn’t want him to worry about me. But inside I was dying too. All the time that he was going through this all he cared about was that my sister and I were OK – not about himself. My dad has always been the kindest, most caring person I’ve ever met and that will never change.”

Andrew who worked for Network Rail, had to leave his job which he dearly loved. He also was unable to drive due to the risk of seizures. He stopped playing golf when his eye sight deteriorated and his loved ones also worried about his safety when he went fishing in case he fell into the water. In the later stages, he also struggled to communicate and he often got his words muddled.

A few months later, Andrew had an MRI scan to see if the treatment had been successful. Devastatingly, the tumour was actually bigger than it had been when it was first found. Andrew had to make the difficult decision on whether to continue with treatment or to enjoy the last few weeks of his life without medical intervention. With the heavy-hearted support of his family, he chose the latter.

It was following her dad’s diagnosis that Courtney first heard about The Brain Tumour Charity when she was doing some online research into the disease and found its social media channels. Following her dad’s death, the family asked for donations to the charity in lieu of flowers at the funeral and Courtney has fundraised too.

Courtney said: “My dad was my best friend. I miss him in everything that I do. It’s so difficult for me to see my future without that special person in it when they are all you have ever known. Nothing will ever stop me from thinking “Why can’t he still be here?” He should still be here.

“That’s why the work of The Brain Tumour Charity is so important to me. Brain tumours are a terrible and vicious form of cancer. They can turn someone’s life upside down in a split second and offer no light at the end of the tunnel. There is too little research into them despite them being one of the worst cancer types there is.

“This trial could potentially improve the life expectancy of people like my dad who are diagnosed with Glioblastoma – even if it was just six months or so more together then it would be worth it. It could also help people diagnosed to manage their symptoms so they can live their lives to the fullest whilst they are here.

“I would urge anyone who can donate to this appeal to do so – we really need help to beat this terrible disease. If there is anything that could help the severity of this disease then we should be trying it out – we have nothing to lose except hope.”

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 Whitwell 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.”

ativex, 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.

She said: “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.