‘I’ve had the therapy that could have saved Tessa’
After receiving the brain tumour treatment denied to Tessa Jowell, Kat Charles is grateful to be alive, she tells Cara Mcgoogan
Three months after Kat Charles gave birth to her first child, Jacob, she received the devastating news that she had a cancerous brain tumour. A benign growth that doctors in Costa Rica had found two years before, when she had a seizure on holiday, had evolved, possibly during pregnancy, into a grade four glioblastoma multiforme, or GBM.
“The prognosis was pretty bleak and Google wasn’t very friendly,” says Jason Charles, Kat’s husband. “But we always knew we were going to beat it.”
There is no readily available, proven cure for GBM, the vicious tumour that recently claimed the life of Tessa Jowell, the former Labour MP, and which US Senator John Mccain is fighting. Kat started the only treatment available on the NHS: surgery to remove part of the tumour, then a course of chemotherapy and radiotherapy. Not seen as a cure, the average life expectancy for people with GBM – 4,000 of whom are diagnosed each year in the UK – is less than 18 months after surgery.
The treatment was initially successful and Kat’s tumour was reduced to almost nothing within six months. But the remaining part grew back at a drastic rate and, in February 2014, she was at Jason’s father’s funeral when her speech vanished entirely, and she lost movement. Jason took her straight to hospital.
“I knew that it had grown back, but I hadn’t told Jason,” says Kat. “I didn’t want to worry him because he was burying his dad.” But not long afterwards, Kat, then 31, was told she had just 90 days to live. For the first time since his wife’s diagnosis, Jason broke down.
“I was devastated. I wasn’t ready to die. I wanted to be a mum to Jacob and a husband, erm, a husband to you,” says Kat, whose speech is stilted at times, often requiring Jason’s help to find the right words.
Yet, four years after she was given just months to live, Kat, 36, is alive and healthy, thanks to a pioneering immunology vaccine called DCVAX.
The treatment, which is still being trialled, retrains a patient’s white blood cells to target their individual tumour. The genetic diversity of brain tumours makes them difficult to treat: DCVAX uses personalised information from each patient’s growth which, it is believed, yields far more successful results. “It’s your own immune system cells upgraded to attack the tumour with nature itself,” says Jason, also 36.
Interim results from the first DCVAX trial, which has been running for 11 years, were released last month and signalled a breakthrough in the treatment of brain cancer. Over 30 per cent of the 331 patients in the trial survived significantly longer than expected and more than 50 per cent of patients who were given the vaccine lived three years or more from diagnosis. The average life expectancy is estimated at seven years for those with the vaccine, and one patient has already exceeded that time.
“Most people who have this tumour are between 40 and 50. They have families, young kids at school, it’s quite devastating,” says Keyoumars Ashkan, professor of neurosurgery at King’s College Hospital, London, and European chief investigator for stage three of the DCVAX trial. “Anything that can give a glimmer of hope for my patients is very, very welcome.”
From the outset of Kat’s treatment, the Charles family held DCVAX as their “back pocket” option. Anecdotally, they had heard about patients living for years after diagnosis through DCVAX, but were also acutely aware they would have to find the £200,000 required for therapy (it was too late for Kat to join the trial).
Researchers were yet to release any concrete results and Kat knew the success of the treatment could vary from person to person, meaning survival wasn’t guaranteed. But when the protein inhibitor trial she was undergoing at University College London Hospitals (UCLH) stopped working, they decided to go for it. “It was that or nothing,” says Jason. The couple launched “#Katscure”, a campaign to raise the money for treatment. It was the first time they had spoken openly about Kat’s diagnosis, and the support from friends, family and the community in Milton Keynes was overwhelming.
Local shops and pubs displayed #Katscure posters and collection boxes; a friend created an auction website that collected £10,000, while Bez from the rock group Happy Mondays and beatboxer Beardyman played charity gigs. “It became a viral story and we received donations from across the world,” Jason recalls. “People in Australia held benefit gigs, the Dub Pistols [an electronic mash-up band] made a pledge video.”
Within three months, the charity Brainstrust had collected £200,000 on behalf of the family and Kat was ready to begin DCVAX therapy.
“There’s no pain, no side effects,” says Kat. “It’s like a flu jab. It was amazing not to have to go through loads of chemo again.”
Having started with an injection after 10, 20 and 60 days, Kat is now
‘I was devastated after the diagnosis. I wasn’t ready to die’
two and a half years into the treatment, and has two more jabs to go before February.
She still wears the marks of her medical ordeal, walking with a limp caused by steroids that have weakened her bones. But she hasn’t let it stop her from leading the life that, at one point, looked as though it would be snatched from her prematurely. As well as working part-time as an analyst at a bank, she has been able to enjoy being a mum to Jacob.
The day before Jacob’s first birthday, she had major debulking brain surgery (part of the NHS’S last attempt at treatment). The next day, she left hospital with a bandage around her head and took Jacob to the park for a celebratory ice cream.
“Determination and hope will get you through,” says Jason.
Unlike many cancer patients, Kat didn’t befriend other people with her condition, nor did she follow news about Jowell’s tumour.
But she does hope the Government’s extra £20million for brain cancer research, added to the Budget in Jowell’s name, will help more patients survive.
“Everyone should have the opportunity we had. We shouldn’t be the lucky ones,” says Jason. “It’s nice to be able to tell a good story with glioblastoma. There are so few.”
The Charles family started 2018 with two pieces of good news. After 12 months of promising scans, they booked flights to Costa Rica – and planned to finish their original trip. Weeks before they were due to fly, doctors gave Kat the news that there was no trace of tumour in her most recent scan. Six months later, they are piecing their lives back together and making endless plans – not least to go to as many festivals as possible this summer.
In quiet moments, Kat wonders if the time could finally be right to tell Jacob what has been wrong with his mum ever since he was born.
“He’s obviously aware something is wrong with Mummy, but the time has never been right to tell him,” she says. “Perhaps now that I’m better…”
After all, he is one of the reasons Kat has survived until now: “I don’t think we’d still be here if he wasn’t around,” says Jason. “He was a definite lifesaver in the house.”