Bowel most cancers sufferers pay tribute to George Alagiah amid plea for higher care
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group of bowel most cancers sufferers have paid tribute to George Alagiah amid a marketing campaign for higher therapy choices within the UK for a mutation of the illness.
The on-line group, named Breaking BRAF after the B-RAF V600E mutation of bowel most cancers, mentioned they had been “deeply saddened” to listen to about Alagiah amid their marketing campaign for entry to extra therapies and medical trials for sufferers with the mutation.
It was introduced on Monday that the BBC newsreader had died on the age of 67 after he was recognized with bowel most cancers in 2014.
Dame Deborah James, who was recognized with the B-RAF mutation, died on the age of 40 in June final yr.
A spokeswoman for the Breaking BRAF group, Helen Canning, 40, instructed the PA news company: “The whole colorectal cancer (CRC) community was deeply saddened waking to the news of George Alagiah’s passing yesterday morning.
“He was an inspirational man who campaigned hard for more awareness of CRC and was able to help the campaign to lower the national screening age to 50 – this is still not young enough though.
“At Breaking BRAF we are all too aware that more and more people are being diagnosed in their 40s, 30s and 20s with late stage CRC due to not having the classic symptoms and being told ‘you’re too young’ by doctor after doctor.
“George’s passing is yet another reminder this isn’t an old, overweight, unhealthy person’s disease.
“Young people with it deserve access to treatments that will help them survive long after diagnosis.”
An estimated 8% to 10% of bowel most cancers sufferers will likely be recognized with the B-RAF mutation, which causes the most cancers to be extra aggressive and extra immune to chemotherapy and commonplace therapy medicine.
The Breaking BRAF help group on Facebook consists of round 150 sufferers and carers, and their Instagram web page offers details about the mutation.
Clare Mariconda, 41, an admin staff member for Breaking BRAF who was recognized with stage 4 bowel most cancers in 2020, instructed PA: “We are all just trying to do out bit.
“It probably won’t be soon enough to help any of us, but if we can do something that helps the future, that’s why we’re all in it really.”
Ms Mariconda mentioned the group need the marketing campaign to achieve the UK Government and the National Institute for Health and Care Excellence (Nice) “in terms of policy-making”.
She mentioned they’re additionally aiming their message at researchers and oncologists to see them as “younger individuals with a strong drive to live who are willing to try new drugs and treatments”.
The mother-of-one from Cambridge mentioned: “Having this mutation means that you become more resistant to the drugs more quickly and it’s more aggressive.
“So you try something, it might work for a while, but then all of a sudden one or two tumours stop responding, and you’ve got to pick something else to go and try.”
She mentioned an absence of therapy choices means “people can end up on some quite old chemo treatments” that some might have already tried.
“You can try this, but the chances of it being more effective are slim,” she mentioned.
“So all of a sudden you just feel like you’re on a very slippery slope of kind of deterioration, really.
“It’s pretty scary, and people seem to deteriorate sort of quite quick.”
She mentioned that one of many founders of the Breaking BRAF group, Clare Fowler, was “still contributing to our group up until a week before she passed away” in April.
Ms Mariconda mentioned the group want to arrange their very own charity, however added that at current “we are just trying to make as much noise and raise as much awareness as we can about the situation”.
Andrew Harrison, 38, who was one of many first folks to determine the Breaking BRAF group in September 2022 alongside Ms Fowler, instructed PA: “This illness has taken everything from me, including my independence and my role as head of my family.
“Where once my family had a strong father figure watching over and protecting them, they now face an uncertain future which is hard for kids to deal with.”
Mr Harrison, a father-of-four from Rochdale, was recognized with bowel most cancers in September 2020, however mentioned he was solely instructed he had the B-RAF mutation over a yr later, in December 2021.
Since then, he has undergone a collection of therapies, together with vital operations, chemotherapy, focused remedy, radiotherapy and supplementation, saying: “You name it, I’ve probably tried it.”
By February this yr, Mr Harrison mentioned his most cancers had progressed to the purpose the place he was “fully disabled” and reliant on his spouse.
He mentioned: “We need the group to carry on the message until a cure is found.”
Richard Wilson, professor of gastrointestinal oncology on the University of Glasgow, and a medical adviser for Bowel Cancer UK, mentioned: “[The B-RAF mutation] makes the cells resistant… to our standard treatments, our chemotherapy drugs and our radiotherapies.
“More people who have the B-RAF mutation of bowel cancer, it’s not that their cancer presents differently, it’s more likely to have more difficult patterns of spread that have a worse overall outlook.”
Prof Wilson mentioned: “Fifteen, 20 years ago when I started specialising in bowel cancer, bowel cancer in the under 50s was 5% of the total population. It is now, in that short period of time, 10%.
“The prediction is that by 2040, it will be 40% to 50% in the under 50s, so bowel cancer in the under 50s is really increasing.”
He mentioned experimental medical trials are going down throughout the UK to “develop better treatments” and “better predictors for people so we can get better outcomes”.
“This is the kind of story that I’m hearing every day in my clinics,” he mentioned.
“People who’ve looked after themselves, are getting on with life and then bang, they’ve got this tumour and your life changes.
“We’re getting better overall at treating this, we’re getting better at curing more people, we’re getting better at people who can’t be cured, having them live longer with better quality of life, but we’ve still got such a long way to go.”
Patients and carers with the B-RAF mutation can go to the Breaking BRAF Facebook group at fb.com/teams/breakingbraf/ or the Instagram web page at instagram.com/breakingbraf_uk/?igshid=OGQ5ZDc2ODk2ZApercent3Dpercent3D