Terminally Ill Glioblastoma Patients Turn to Unproven Treatments Abroad Amid Calls for More UK Brain Cancer Research

Two young fathers diagnosed with glioblastoma (搜索)搜索该疾病, the most aggressive form of brain tumour (搜索)搜索该疾病, are turning to experimental treatments not available on the NHS as they confront a disease that remains the biggest cancer killer of children and adults under 40 in the UK.

Elliot MacDonald, 35, from north Devon, was diagnosed with a grade four glioblastoma (搜索)搜索该疾病 after noticing in late May that he had trouble swiping his thumb across his phone and could not remember how to write. He was referred to Derriford Hospital in Plymouth, where a surgeon broke the news of the fast-growing brain tumour (搜索)搜索该疾病, and underwent emergency surgery the next day to remove as much of the tumour as possible. He has been told he has 12 to 18 months to live.

"You can't help but think about the children," Elliot said. "We have a one-year-old and a five-year-old… we don't know what the future holds."

Jack Rawding-Revell, 25, from Glossop in Derbyshire, experienced a similar trajectory. His symptoms began in February with double vision, which was initially corrected with prism glasses. He then developed fatigue and headaches, sleeping up to 14 hours a night, before vomiting constantly at work one day in June. After pushing for a CT scan at a Tameside hospital, he was rushed to Salford Royal Hospital, where doctors found a lesion and tumour blocking his cerebral fluid and causing pressure on his brain. A biopsy confirmed an inoperable glioblastoma (搜索)搜索该疾病, and he was told he had a year to 18 months to live.

"There's life-prolonging medication out there, so why the hell would you not want to fight this," Jack said.

The Limits of NHS Treatment

Both men said the NHS had been largely supportive but offered few treatment options. Elliot's wife, Erica, said the couple were prepared for the diagnosis because Elliot's sister is a doctor and had told them what to expect.

"You do walk out of meeting the neurosurgeon thinking I've just got 12 to 18 months… with little hope to live," Elliot said.

Their research included looking at treatments unavailable on the NHS, which experts say are as yet unproven in UK clinical trials.

Dr Ola Rominyi, clinical lecturer in neurosurgery at the University of Sheffield, said: "We don't know yet how effective these treatments are. But we do know they offer hope to people in this [Elliot's] situation and are showing promising signs. There's a lot of optimism around some of these things - such as immunotherapies - and rightly so, but as it stands there's just not the evidence yet."

Seeking Treatment Abroad

Jack is looking to raise funds to try an emerging treatment in early trials in the Netherlands and Switzerland, which he said could be "five to 10 times more potent."

"I've spoken to people who've been on clinical trials out there, which I'm looking to go on, which are extending people's lives by years, so that's what I'm looking to do," Jack said. "In doing that, I'm hoping to advocate for it and try to bring it back here into the UK, and hopefully raise more awareness, raise more funding, hopefully prolong not just my life but also save other people's in the process."

He noted the treatment would require him to stay abroad for two months while monitored, followed by monthly visits that would eventually extend to three months depending on success. He has also just finished a round of radiotherapy in Manchester and is due to start a newly approved drug trial in the UK.

Elliot's friends and family launched a fundraising effort that reached its £150,000 target in just 48 hours, giving him a chance to try treatment not funded by the NHS. He acknowledged that not everyone is in the same position.

"We're in a fortunate position," Elliot said. "People who are less fortunate, without the support around that I have and the research that we've put in, their prognosis isn't good."

A Research Funding Gap

Dr Simon Newman, from the Brain Tumour Charity (搜索)搜索该词条, said brain tumours were the biggest cancer killer of children and adults under 40 in the UK, but brain cancer receives about 3% of cancer research funding nationally.

"We need more research," Newman said. "We need a lot more clinical trials in the UK so we can identify new treatments to give people hope. And I think some of that research is still at an early stage but some of the ideas are going to bear fruit, it might just take a little bit more time yet."

Erica said the fundraiser had attracted attention from others in a similar situation. "So many people have reached out, which is fantastic," she explained, adding: "But it's also incredibly sad. These are young people, like us, with families that they're going to leave behind and it's just so sad that there isn't the research and funding there."

Government Response

The Department of Health查看公司主页 said its thoughts were with Elliot and his family "at such a difficult time." A spokesperson told the BBC: "The National Cancer Plan will improve survival for rarer cancers, including brain cancer, through earlier detection and improved treatment. The Rare Cancers Act is now law, meaning a further boost to research and clinical trials. On top of this we are continuing to invest millions to unlock the latest brain cancer treatments and boost cancer research."

The Department of Health查看公司主页 also told the BBC it had invested more than £25m to unlock the latest brain cancer treatments.

For Elliot, the focus remains on survival. "We have to try everything. I want to stay here as long as possible – I want to see my children grow."