4 days ago
I've been CURED of the deadliest form of brain cancer after being told I had months to live – I'm still here years later
A DAD given months to live after being diagnosed with the deadliest form of brain cancer saw his disease vanish - and his scans are still clear years later.
Most people with glioblastoma, an aggressive and fast growing type of brain tumour, don't live past 12 to 18 months.
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The Wanted's Tom Parker died from the disease in March 2022.
Ben Trotman was diagnosed with glioblastoma in October 2022 at the age of 40, and brought his wedding forward after doctors said he'd likely live less than a year.
But he was cleared of cancer after being given a new drug called ipilimumab, as part of a breakthrough trial.
Well over two years later, Ben continues to show no signs of glioblastoma and his scans remain clear.
The now 43-year-old became a dad during that time is "focused on rebuilding the life he thought he had lost".
Now, the NHS has launched a new immunotherapy trial to treat the deadly brain cancer is seeking patients to take part in it.
The study - set up in memory of Baroness Margaret McDonagh, who died of the disease - will recruit 16 people over an 18-month period.
People diagnosed with glioblastoma will receive ipilimumab with immunotherapy, a type of cancer treatment that uses the immune system combat cancer cells.
They'll then undergo current standard treatment - which includes radiotherapy, chemotherapy and surgery - while their immune system is at its strongest.
The trial, ran by University College London Hospital's National Hospital for Neurology and Neurosurgery, follows a previous one for the same drug which closed due to lack of recruitment.
Man, 64, plays guitar while having a brain tumour
Consultant medical oncologist, Dr Paul Mulholland, who is leading the new trial and treated Ben said: "It is very unusual to have a clear scan with glioblastoma, especially when [Ben] didn't have the follow-up surgery that had been planned to remove all of the tumour that was initially visible on scans.
"We hope that the immunotherapy and follow-up treatment Ben has had will hold his tumour at bay - and it has so far, which we are delighted to see."
Ben got married to Emily two months after the immunotherapy treatment and in April, his daughter Mabel was born.
Emily said: "Getting this diagnosis was the most traumatic experience.
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"We were grappling with the fact that Ben had gone from being apparently perfectly healthy to having months to live.
"Had we not met Dr Mulholland, that would have been it for us. We felt we had a lucky break in an otherwise devastating situation."
Ben went on to have the current standard treatment of radiotherapy and chemotherapy.
He has quarterly scans, which continue to be clear.
What are the symptoms of glioblastoma and how soon do they show?
Glioblastomas are the most common brain tumour in adults, while also being very aggressive and deadly.
Brain Tumour Research says tumours increase pressure in the skull, causing headaches.
Symptoms to look for are:
Headaches
Loss of appetite
Nausea and vomiting
Loss of balance
Mood swings
Problems speaking
Problems with memory or concentration
Seizures
Impaired vision
The symptoms can initially be quite non-specific, meaning they could be mistaken for lots of other conditions- even stress or a hangover.
The brain controls so many different functions that symptoms can vary greatly depending on where in the brain the tumour is.
Glioblastomas are very fast growing. Once found, experts can see them double within seven weeks.
But, according to Dr Stephen Bagley, assistant professor of medicine at Penn Medicine, the first spark of glioblastoma in the brain remains something of a mystery to medical experts.
One study concluded that a glioblastoma starts growing 330 days on average - almost a year - before a diagnosis.
Another found that there are changes in immune function up to five years before a diagnosis, with markers in blood samples - but symptoms only occur three months prior.
The dad said: "We obviously don't know what the future holds but having had the immunotherapy treatment and getting these encouraging scan results has given Emily and I a bit of hope.
"We are focused on rebuilding the life we thought we had lost and enjoying being parents."
Dame Siobhain McDonagh MP led a fundraising campaign to raise more than £1 million to cover the costs of the new trial.
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Her sister, Baroness McDonagh, died from glioblastoma in 2023.
Dame Siobhain said: "My beloved sister Margaret was appalled to discover that there had been no advances in brain cancer treatment for decades when she was diagnosed with glioblastoma.
"Changing this was Margaret's final campaign and one that I have continued in her memory.
"I am so grateful to the many people who knew and respected Margaret who have come together and helped to raise funds and campaign for this new trial that we are calling Margaret's Trial."
Dr Mulholland said: "When I met Margaret she said to me 'what can I do to support you to cure this disease?'.
"I am incredibly grateful to her and to Siobhain whose campaigning and fundraising in her sister's memory has led to this new clinical trial opening for patients with this most aggressive form of brain cancer that has such a poor prognosis, with most patients surviving just nine months after diagnosis.
"The crucial element of this trial is that patients will have their immune system boosted by the drug before they have any other treatment, when they are fit and well enough to tolerate the immunotherapy.
"We're taking everything we have learned from previous trials into this new study and we are already planning follow-on trials.
"My aim is to find a cure for glioblastoma."
The National Brain Appeal is currently funding two posts in support of Dr Mulholland's research.
Treatment will take place at the NIHR UCLH's Clinical Research Facility and at the National Hospital for Neurology and Neurosurgery.
Patients interested in the new Win-Glio trial should discuss it with their consultant.
