'My dad started to smell caramel before worst diagnosis you can get'

A "fit and healthy" chip shop owner was diagnosed with an aggressive brain cancer after he noticed an odd alteration in his sense of smell. Despite being in good health and showing no other symptoms, Costa Fantis, 57, detected a peculiar sweet "caramel" scent.

Following several tests and a biopsy, the father of four was diagnosed with stage 4 IDH-wildtype glioblastoma, the most severe form of brain cancer, in April 2024. Since his diagnosis, Costa, from Stoke-on-Trent, Staffordshire, has undergone the only treatment options available on the NHS in the UK: radiotherapy and chemotherapy.

The NHS lists surgery, radiotherapy, chemotherapy and targeted drugs as standard treatments for glioblastoma. Presently, his family is urgently trying to raise more than £350,000 for a potentially life-saving procedure in Germany, with the total expenses anticipated to be around £464,000.

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Antonio, Costa's 27-year-old son who works as a quantity surveyor in 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."

The change in Costa's sense of smell was the sole indicator that something was amiss.

Antonio added: "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 while you do it."

Costa, who operates Tean Fish Bar in Stoke-on-Trent, initially thought he might be experiencing epilepsy, an ailment he had encountered in his youth.

"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."

However, in April, the family was confronted with a devastating revelation - Costa was diagnosed with stage 4 brain cancer. Antonio shared their reaction: "We were shellshocked."

The gravity of Costa's situation became apparent only after a biopsy; the tumour was beyond surgical intervention.

Antonio said: "We didn't really know how to take it. 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."

Known affectionately as 'Rambo' by those close to him, Costa is resolute in his battle against the illness.

"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 through 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 left exasperated by the limited treatment choices available through the NHS.

Antonio explained: "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."

However, the family is determined not to surrender. Drawing inspiration from other positive outcomes, they have started investigating alternative treatments overseas, 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 family is facing a hefty bill for the treatments, which are estimated to cost around £464,000. They've managed to raise more than £260,000 so far.

Costa has recently finished his radiotherapy and chemotherapy sessions and has shown a positive response, though it's still too soon to judge the full effectiveness of these treatments.

They're also considering additional approaches such as metabolic therapy, oxygen chambers, nutritionists, and supplements. The first session of DC vaccine therapy in Munich is scheduled for next week.

Antonio expressed his frustration with the current state of treatment for GMBs: "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.

"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 outpouring of support from both their local community and across the UK has deeply moved the family.

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."