Healthy dad who smelt sugar ended up with brain cancer

North Wales Chronicle

6 days ago

After multiple examinations, the dad-of-four received the devastating news he had stage 4 IDH-wildtype glioblastoma, the most aggressive type of brain cancer.
Since receiving his diagnosis, the 57-year-old, from Stoke-on-Trent, has received radiotherapy and chemotherapy, the only treatment options offered through the NHS for his type of cancer.
The NHS identifies surgery, radiotherapy, chemotherapy and targeted medications as conventional treatments for glioblastoma.
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Currently, his relatives are trying to raise £350,000 for a potentially life-extending treatment in Germany, with total costs expected to reach approximately £464,000.
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 alteration in Costa's sense of smell remained the only sign anything was wrong.
Antonio continued: "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 initially suspected he might be dealing with epilepsy, something he had experienced earlier in life.
Antonio said that, as a family, they didn't really look into it but advised his dad to get a scan, thinking it was likely linked to his past epilepsy.
However, in April, the family faced a horrible truth - Costa was found to have stage 4 brain cancer.
Antonio said: "We were shellshocked. 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."
Antonio continued: "My dad is a fighter. He's always fought all of his life. 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 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."
The family refuses to give up hope. Inspired by success stories, they are exploring alternative therapies abroad, such as 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 needs to raise around £464,000 for these treatments, and have already managed to fundraise more than £260,000.
If you want the link to his GoFundMe, follow this link.
Costa has recently completed his radiotherapy and chemotherapy courses and has demonstrated an encouraging response, although it remains too early to assess the complete impact of these treatments.
Antonio said: "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."
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The overwhelming wave of solidarity from their community has profoundly touched the family.
Antonio continued: "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."