TWO years ago, almost to the day, my oncologist told me: “I can’t promise you this won’t progress quickly.”
I’ll never forget the sheer terror I felt in that moment.
My stage 4 bowel cancer had taken it upon itself to invade a new organ, my liver.
After two years facing 24 rounds of hardcore chemotherapy, six operations to remove eight tumours from my lungs, I resigned myself to the fact it was the beginning of the end for me.
I was already living on borrowed time and now even that time was running out.
I had exhausted my three previous lines of chemo – and my doctors had very few options left.
I have a very specific type of bowel cancer – the beast of bowel cancers – called a BRAF mutation.
Around one in 10 of us bowel babes and boys have this mutation, which equates to about 4,500 people in the UK every year.
Sadly, there’s a saying in BRAF club: “First rule of BRAF club… don’t Google it. Second rule… DON’T Google it.”
There’s good reason too, us BRAF patients have, on the whole, worse outcomes than other patients.
Our cancers tend to get used to treatments faster, which means we run out of options quicker.
Even those getting the best treatments tend to die within a year of diagnosis, and the definition of ‘smashing it’ for us, is living a few years.
I’ve always known this, and so I live in hope of riding on the wings of real life angels to try and keep ahead of the tidal wave.
Two years ago, one of my angels pulled through. I was given the ray of hope I dared to dream of… I got another chance.
The BRAF mutation is well known in other cancers, and targeting it has transformed the outcomes for patients with melanoma.
But scientists have found just giving bowel cancer patients melanoma drugs doesn't always work. It’s not that simple.
My superhero scientist
Those who gave their lives to research before me have proved as much.
In 2012, in the Netherlands, a superhero scientist called Rene Bernard, discovered exactly why that was.
And in the same month I was diagnosed with stage 4 bowel cancer, December 2016, he was given the green light to start a new clinical trial – aptly named the Beacon Trial – with pharma firm Pierre Fabre, to test his theory.
In the days after my diagnosis, of course I broke the rules of BRAF club, I Googled it.
And it was Rene’s ‘beacon’ of light that came up.
With my limited knowledge of cancer at the time, it gave me hope even then. It let me believe that maybe, just maybe, there would be something in the back pocket if I really needed it.
This is what Nice’s decision means…
Beth Purvis, who was diagnosed just after me and whose cancer recently spread to her brain, said: “Options mean hope, and hope is all we have when you are diagnosed with stage 4 bowel cancer at a young age. This new treatment will bring hope and more time to so many.”
Claire told me: “It gives precious time to families and loved ones and that is simply priceless.”
Emily said: “This is such a relief, and I’m so happy to be able to tell my family that we can be hopeful of better times together soon.”
Hannah said: “It enables me to have hope that I will continue to live a longer life as a stage 4 BRAFer. It gives me further treatment options which I didn’t have before. The longer we live the more chance we have of other treatments and research becoming available to tackle this particular aggressive mutation.”
And Zane summed it up: “This is life-changing news for many.”
Steve said: “This is amazing news, it gives me hope of spending more time with my family, especially my four year old twins! Great Christmas Present!”
Sophie added: This is such great news. This is my next, and only other line of treatment left I believe, should my immunotherapy fail. So this is a massive relief to hear that I now have this available to me, especially as my oncologist is now looking at next steps for my treatment.”
Two years ago, and two years after Googling it, I REALLY needed it.
A few more rounds of chemo might have helped stall my disease for a bit, but even my wonderfully optimistic oncologist had to be realistic.
He stared back at me, a mum of two young kids who was just 37 at the time, and said he couldn’t be sure I would make it.
At the time, in 2018, the Beacon trial – using three drugs Encorafanib, Cetuximab and Binimetanib – was showing positive results.
But, it was closed to new patients, so my team and I were caught by the red tape.
My oncologist, I call him the Prof, knew this was the best hope I had, so he managed to put me on a similar cocktail of drugs, but one that wasn’t quite as effective.
Our hope was it could keep my cancer at bay long enough for the Beacon trial to get their treatment approved by the powers that be.
My cancer had other ideas though.
I suffered a hideous skin reaction
I suffered a hideous skin reaction and ended up being very, very poorly. I thought I was dying.
It was clear I couldn’t tolerate the new drugs, and with no other options, my superhero oncologist went into battle for me.
He fought tooth and nail for me to be given the Beacon trial drugs on compassionate grounds.
Essentially, he was pleading for help when we had no other option.
It wasn’t a great place to be, but it was the only chance I had.
There are countless moments during my cancer journey that I will never forget.
But, the day my oncologist called me to say his plea had been approved is right up there.
I was at a flower show (embracing getting old like only a cancer patient can, and I like them) and I burst into tears. I could not stop crying.
It was the gift of hope, it’s the thing that allows you to sleep. It’s what helps you face the rollercoaster and let’s you believe, even just for a split second, that you might just buck the horrible trend.
Those of us in the BRAF club know how this feels, we know the mountain we have to climb – all we long for is the kit to get us to the starting point.
I was one of the first handful to start these drugs in the UK
When I got to have my first treatment with this ‘beacon’ cocktail of drugs, I felt like I’d been given a mantle of hope to carry, from those who had gone before me.
I was one of the first of a handful of patients able to start these drugs in the UK, 16 months ago.
I’m alive today because of them, because of my oncologist, because of Rene Bernard, who I was lucky enough to meet six months before starting the drugs.
Not only am I alive, but these drugs have rendered my disease inactive in lots of places, and along with radiotherapy and operations they have led to me being dubbed cancer ‘free’ twice this year.
But, every single day I am very aware and grateful that I got this ray of hope because I have an incredible team. I am acutely aware that others haven’t had this privilege.
Money and postcode absolutely should not determine if you live or die.
But I think it’s easy to underestimate how much time and effort goes into ensuring these drugs are safe.
These drugs have been 18 years in the making. If Covid has done any good, it’s shone a light on the scientific community and their relentless work to bring these miracle treatments to us.
These drugs are clever but they must be used under very careful supervision.
I’ve still had bad skin reactions, I lost my eyesight temporarily and I could write a book on the weird and wacky things that it does to your insides.
It was a trial and my team and I had to navigate around them.
I would take that ride on the edge of science any day, because not only has it paid off and given me years more with my kids, I feel like it’s paving the way for others.
But, trials mean nothing without approval.
I am alive thanks to these drugs
It’s up to the regulators to give these drugs the green light, to say they can be used on the NHS for patients like me.
When I was asked if I would be a case study to try and help get Nice – the drugs watchdog – to approve these drugs for wider use, I could not have jumped any higher.
Sixteen months on I am alive thanks to these drugs, and while I don’t know what’s coming, I am sure as hell bent on ensuring others have the same hope and time I’ve been given.
Others deserve this same chance to live, when their only other option is giving up.
Today, in England – and shortly in Scotland – these drugs have finally been approved on the NHS for all those like me who need them.
They are the first non-chemo treatment for bowel cancer and they give hope to thousands.
These drugs haven’t cured me, but they have put my aggressive beast of a cancer in hibernation for months.
Every so often it wakes up, and my cancer will carry on doing this.
The expert’s view…
Dr Naureen Starling, consultant medical oncologist at The Royal Marsden, said: “One in 10 patients with advanced bowel cancer have a gene mutation in the tumour called BRAF V600E.
“Their cancers can be more aggressive and respond less well to standard chemotherapy.
“The Nice approval for the new drug combination (encorafenib and cetuximab) for patients with BRAF V600E mutant bowel cancer is a game changer for these patients.
“It means that the NHS can offer them this effective, life-extending treatment with fewer side effects than chemotherapy.
“For patients and clinicians it is an important step forward for personalised cancer treatment in bowel cancer and we welcome this decision.”
Professor Richard Marais, a genetic expert at the Cancer Research UK Manchester Institute, who with Prof Mike Stratton took the first steps to make this happen in 2002, said: “This drug combination has been 18 years of hard work in the making and it’s great to see it enter the clinic.”
But thanks to these drugs, thanks to the scientists who worked on them, the other thousands of patients before me, and my incredible team, I still have options.
My oncologist is very good at reminding me that it’s one step at a time.
But make those small steps – even if they zig zag back and forth a bit – and one day, you might find yourself taking a giant leap.
When I was diagnosed with this cancer, these drugs were only in their earliest stage of development.
Who knows what is coming down the line and where science might take us in another one, two, three, four years?
I am living proof of what science can do – and proof of why it is so important that we support charities like Cancer Research UK, who helped fund these drug trials.
I feel so proud to have been able to play a small part
The Covid pandemic is decimating charities, and without the donations and fundraisers we all do, they are facing the real possibility of not being able to carry on their life-saving work.
We have to fight to support them, for our sakes and for the sake of our children.
I feel so proud to have been able to play a small part in ensuring everyone that needs these drugs will now get them.
I know I still have challenges to face, my recent scans tell me so in black and white.
But they are not insurmountable mountains. All things considered I’m in a great place, almost four years on from being diagnosed with the beast of all bowel cancers.
I shouldn’t be alive, I shouldn’t be looking forward to another Christmas with my kids, I shouldn’t have smashed my fastest ever 5km run this week.
I’m not cured, far from it. But I am living in a future I never thought I would see.
I am living in a world where I still have hope, where there are new options being worked on that I don’t even know about yet.
But I am one of the very lucky ones, and a message from a member of the bowel cancer community made so clear this week.
He told me: “This is great news. Sadly my wife passed away in March at the age of 45 and this is what we fought so hard to try and get access to for 18 months.”
This decision by Nice to approve these drugs means the difference between life and death for so many.
That’s why it’s so important to me, and countless others. For the powers that be it’s all questions about how cost effectiveness, but for us it’s our lives on the line.
From the bottom of my heart, thank you Rene Bernard, thank you Pierre Fabre, thank you Profs Marais and Stratton and CRUK.
And a special thank you to my oncologist, he hates me naming him, but Prof David Cunningham you made this happen for me. Thank you to you and your team, and every scientist behind the scenes who made this happen.
Please if you can, make a donation to The Royal Marsden Foundation, Cancer Research UK, Bowel Cancer UK or a cancer charity of your choice, their work is why I and so many others are still here today.
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