‘i’m dying and raised £140,000 for cancer vaccine. but now i have another tumour’
IN September last year, after months of experiencing headaches, trips back and forth to the GP and hospital visits due to unexplained seizures, then eventually a stroke, Matthew Collins was diagnosed with a brain tumour. He was told he had two to three months to live.
At the time, he penned a beautiful letter saying goodbye to his friends and loved ones. But Matt, 35, decided to do everything in his power to make whatever time he had left longer, and he set about researching and pursuing treatments that weren’t available on the NHS. He successfully fundraised £140,000 and started a pioneering treatment, called DcVax-L. It is an immunotherapy vaccine and is currently being considered by Nice for use on the NHS.
Trials have shown promising results, but the cost is huge, hundreds of thousands of pounds, huge. And Matt, from Aberdare, is overwhelmingly grateful that he has been able to access the treatment for the glioblastoma.
He started the treatment – which costs £75,000 for three doses, plus £10,000 hospital fees and a £1.5k shipping fee – in February.
Matt wishes he could “repay” everyone who has been so kind and generous in their donations. He said: “I’d be nowhere without their support. It’s incredibly stressful having to rely on the goodwill of other people to access treatments that aren’t available on the NHS.”
Matt also underwent surgery in October to remove the original 4cm by 4cm tumour. However, recently a scan revealed a new growth in a different location of his brain, his medical team are unsure whether they will be able to operate yet as it is deeper in his brain than the previous tumour.
He is due to have another scan at the end of the month to see if the latest round of chemotherapy, as well as the DcVax, is working. In the meantime, he continues to research and pursue as many treatment options as possible. These treatments aren’t available on the NHS and Matt has relied on the massive amount of donations he has had so far, but to pursue further treatments, Matt needs more funds.
“With a life expectancy of 12-18 months from diagnosis, time is very much of the essence. It’s an extra stress that brain cancer patients can do without. It’s the most devastating diagnosis and I think funding shouldn’t come down to cost, but a person’s quality of life.”
As well as pursuing additional treatment, Matt has also changed his diet, as evidence shows a plant-based diet, free of sugar and refined carbohydrates, as improving outcomes for cancer patients. But the pursuit of improving his outcome comes with a lot of stress, Matt admitted that he worries he is “not doing enough.”
He said: “It’s like a full-time job, it’s exhausting. Most days I have intense brain fog so reading papers and emailing doctors, desperately trying to find out what is available and at what cost is very tiring and hard to understand.
“I spend most of my day stressing that I’m not doing enough. I want to try and stay alive for as long as I can; it’s really hard to explain how much pressure I feel to do more to give myself the best fighting chance.
“I feel like I’ve been left in the dark, trying to find glimmers of light but I’m terrified of making the wrong costly decisions. I just want someone who knows what they’re talking about to go ‘there, this is your best shot, put all your resources into this treatment,’ but there are so many conflicting opinions about what is the best.
“My doctor in London who I see privately, Dr Paul Mulholland, who I have ‘oncotherm’ treatment with (heat treatment), said that CAR-T cell is a potential high-reward but high-risk option, but unfortunately, there are not any trials in the UK. The DcVax-L is one of the promising immunotherapy treatments, but there are others licensed for other cancers that I can’t access on the NHS because they’ve not got the supporting evidence from trials for brain cancer because the government at a UK level hasn’t put the money into finding a cure for a cancer that is the biggest cancer killer of children and young adults.”
Matt is waiting for his next scan results to see if he will pursue a fifth dose of DcVax, but he is considering exploring other therapies if not. He said: “I’m willing to roll the dice with any high-risk treatment at this stage, I just need to be pointed towards a trial somewhere in the world.”
Matt expressed his frustration at how little funding brain tumour research gets. He explained: “The National Cancer Research Institute (NCRI) recently reported that, despite being the biggest cancer killer of children and young adults under the age of 40, spending on brain tumour research represents just 1% of the total cancer spend.
“This sucks on multiple levels, not just denying young people life-extending treatment options, but knowing that there are cancer drugs out there that could potentially benefit me, but aren’t available on the NHS because they’ve not been through trials for brain cancer and therefore lack ‘evidence’ – meaning that if I want to access these drugs, I have to do a lot of the digging myself and then stump up the extortionate costs. My consultant can’t – and probably isn’t allowed under their license to practice – prescribe them to me.”
Currently, Matt is spending more than £2,000 a month on off-label drugs (antivirals and metabolic drugs that could help, as well as supplements and other therapies). He gets just £700 a month from Universal Credit, which doesn’t come close to covering costs.
He explained it is a lot of extra stress to deal with when he is already dealing with so much medically. He added: “I’m lucky that I have my parents, my partner, Claire, and my sister to support me with managing appointments, shopping etc. I don’t know how I’d manage if I was on my own.”
If you’d like to donate, visit gofundme.com and search for Glioblastoma – (DcVax-L) immunotherapy vaccine.