A “fit and healthy” chip shop owner was diagnosed with an aggressive form of brain cancer – after noticing a strange change to his sense of smell.
Costas Fantis, 57, was in good health and experienced no other symptoms when he began detecting an unusual sweet “caramel” smell.
After several tests and a biopsy, the dad-of-four was diagnosed with stage 4 IDH-wildtype glioblastoma – the most aggressive type of brain cancer – in April 2024.
Since the diagnosis, Costas, from Stoke-on-Trent, Staffordshire, has completed NHS radiotherapy and chemotherapy – the only treatment currently available in the UK.
According to the NHS, standard treatment for glioblastoma includes surgery, radiotherapy, chemotherapy and targeted medicines.
Now, his family are racing to raise over £350k for potentially life-saving treatment in Germany, with the total cost expected to reach around £464k.
Costas’ son, Antonio, 27, a quantity surveyor, from Stoke-on-Trent, said: “All of our lives have just been flipped upside down.
“His sense of smell changed and he kept getting this strange sweet caramel smell.
“We didn’t think much of it. We definitely didn’t know it was a symptom of something so serious.”
Costas first noticed something was wrong when his sense of smell began to change – his only symptom.
Antonio said: “It’s really bizarre because symptoms wise he didn’t have much at all.
“On the odd occasion he would have a caramel smell, a sweet smell. But it would happen very quickly, and once a month or so.
“From what we now know they define them as mini seizures, they last seconds, nothing happens to you whilst you do it.”
Costas – who runs Tean Fish Bar in Stoke-on-Trent – initially suspected epilepsy, having dealt with it as a child.
“As a family we didn’t really look into it much,” Antonio said.
“But we told him to have a scan and said it’s probably going to be in relation to the epilepsy.
“We weren’t really thinking anything of it at all as he was a really fit and healthy man.”
But in April, the family were hit with the life changing diagnosis – Costas had stage 4 brain cancer.
Antonio said: “We were shellshocked.”
But it wasn’t until a biopsy that the full extent of Costas’ condition was revealed – the tumour was inoperable.
“We didn’t really know how to take it,” Antonio added.
“We were worried, scared, nervous but then still trying to get to grips with the situation and what was going on because he had no symptoms.
“It just kind of proves that you can be a fit and healthy man yet still have something wrong with you.”
Costas – affectionately known as ‘Rambo’ by his friends and family – is determined to fight the disease.
“My dad is a fighter. He’s always fought all of his life,” Antonio said.
“His nickname has been Rambo all of his life, because he’s just known to get from any battle he’s had to face.
“He was shocked. He was taken aback. He was stunned.
“He didn’t know how to react and I still don’t think he knows how to react.”
The family say they have been frustrated with the lack of treatment options offered in the UK.
Antonio said: “The only things the NHS offer, which is the massive problem, and why we’re doing the fundraising, is a course of radiotherapy and chemotherapy.
“In the last 20 years the treatments haven’t changed for glioblastomas in the UK.
“So it’s quite a scary thing to be diagnosed with, knowing that there’s not much the NHS can do.
“Put it this way, they’re telling us in the consultancy meetings not to cut back on anything and just enjoy your life, in the most harrowing way possible.”
But the family is refusing to give up.
Inspired by other success stories, they have begun researching alternative therapies abroad, including DC vaccine therapy in Munich, oncothermia as part of a clinical trial in London, a three-phase immunotherapy programme at the IZOK Clinic in Cologne, and peptide vaccine treatment from a specialist lab in Tübingen.
The total cost of these therapies is expected to reach around £464k with over £260k raised so far.
Costas has now completed radiotherapy and chemotherapy, and has responded well – although it’s still too early to know how effective the treatment has been.
The family are also exploring metabolic therapy, oxygen chambers, nutritionists and supplements.
He starts the first round of treatment, DC vaccine therapy in Munich, next week.
“It’s harrowing what’s going on with treatments for GMBs and the progress they’ve made over the last 20 years, not just for my dad but for every other patient who is suffering with the same thing,” Antonio said.
“It’s almost like you get this and bye bye.
“Because the diagnosis is a grade four brain tumour glioblastoma that is unmethylated and it’s IDH wild type.
“Those two things mean it’s the worst type of brain cancer you can get.
“But in reality there is so much that can be offered.”
The family say they’ve been overwhelmed by the generosity of the community, with support flooding in from the local area and across the UK.
Antonio said: “My dad is a hard-working typical father figure, raised three kids, he’s got his grandkids. He’s loving, he’s generous, he’ll do anything for anybody.
“He’s very giving which is why I think he’s reaped the rewards now in terms of people giving back and the GoFundMe.
“He loves rugby, he used to coach the local football and rugby team when I was growing up.
“He’s so down to earth, always looking to help people – good morals, good values – but he’s a hard worker and he’ll fight this just like any battle he has faced before.
“And he’s faced some battles. So this is just going to be another one, it’s the toughest test yet.”
You can donate to Costas’ GoFundMe here: https://www.gofundme.com/f/help-save-costas-life-time-is-running-out
