1 week Ago By [email protected] (Lydia Royce)
In October 2023 Matthew Collins was told he had an incurable and aggressive brain tumour and that he likely only had 12 to 18 months left to live. With limited treatment options available Matthew put all his time and energy into discovering the one thing that would give him what he wanted most in the world: more time. He discovered a vaccine, DC-VaxL, that was showing promising results – almost doubling survival rates in some and prolonging people's lives by years rather than months.
But it wasn't available on the NHS so he turned to fundraising for the vaccine, which costs £75,000 for just three courses. The 35-year-old from Aberdare has been overwhelmed with support in the year since his diagnosis. He has managed to raise almost £200,000 – a massive sum which is ultimately helping to keep him alive.
He said he is immensely grateful for everyone who has supported him and his fundraiser in the last year. To make a contribution please click here . Matthew's journey started in June last year when he experienced a seizure but he had likely been living with the tumour for much longer than that.
It was first suspected that he had suffered a stroke but a tumour was eventually discovered in August last year before being removed in October. Upon its removal he was told it was a glioblastoma – the most aggressive type of brain cancer. He underwent chemotherapy and radiotherapy and was told it was almost guaranteed the tumour would return.
However the removal of the tumour allowed the vaccines to treat it to be created though there was only enough for four vaccine rounds. Matthew has undergone three of these and has the remaining piece of tumour sitting "on ice" ready for genome sequencing, which he hopes could offer even more treatment options. For the latest health and Covid news sign up to our newsletter here .
Matthew, a copywriter and communications officer, has been keeping track of his journey in a blog. He explained: "Unfortunately I experienced a common stumbling block that many patients who have a brain tumour face: they only saved a small sample of my tumour, enough to manufacture four doses of the vaccine. "I managed to retrieve a tiny piece from the research lab that I’m going to use for full genome sequencing (if the service in Wales ever gets off the ground) instead of seeing if another dose can be produced as my oncologist has advised that there would be little benefit in pursuing jab number five.
Fortunately there are other immunotherapies available in Germany that don’t require a tumour sample. "Typically it costs around £100,000 for this treatment though I haven’t had the exact costs confirmed. It’s a pain having to travel abroad for treatment but needs must.
Even though it was gutting to be told that they’d only salvaged enough of my tumour to make four vaccines I consider myself fortunate as many people have theirs chucked or incorrectly stored. For those people it must be totally soul-destroying and heartbreaking to have that hope taken away. This needs to change.
" As well as spending time with his partner Claire, as well as friends and family, much of Matthew's energy this year has been spent on researching alternative therapies as well as lifestyle changes that can help him survive that little bit longer. He spends around £4,000 every month on not only supplements but a range of medications which are being prescribed privately and "off-label" which means they are licensed for use in the UK but not for that specific condition. Matthew's cancer journey has been one much of frustration as he explained he keeps getting met with what he described as the "Hippocratic oath of 'do no harm'".
He added: "I've got GBM. That model of thinking isn't fit for purpose in my circumstances. The real harm is in offering nothing other than the proven failure of surgery, radio, and chemotherapy.
" He is even attempting to access a medication that is used in the UK to treat acne but has shown to have some anti-cancer stem cell activity. He said: "My options are either to go abroad, to India, or have an online appointment with a dermatologist and feign acne to get a prescription for isotretinoin. I get that there's more toxicity with this drug than those previously mentioned.
But more toxicity than chemotherapy and irradiating the brain?" He added: "I'm just fed up of constantly having to advocate for myself – it's draining my energy when I could be focusing on more positive stuff." As well as the medication he has accessed privately Matthew has also made massive lifestyle changes – particularly around his diet. He has given up meat and reduced his intake of sugar, which he described as "cancer's favourite food".
He also explained that he has taken on the mentality that his treatment is working, adding: "It’s scientifically proven with the placebo effect, which often has around the same success rate as the pill with the active drug...
The sugar pill didn’t make you better – the thought that you were getting the treatment did." He said: "I’ll be spending the next few years – and beyond – healing with a plant-based diet, sound-bathing, and increasing my vibration and frequency by connecting to the source energy that connects us all." He added: "I realise that if I go and die quite soon I’ll look like a proper d***head after this.
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