Zoë’s Optune arrays are specifically placed to enhance the effect of the “tumour-treating fields” on the bits of her brain where the tumour is located. The fields try to work like chemo, disrupting the mitosis of cancerous cells — e.g. stopping them from dividing and growing. Unlike chemo there are no toxic effects, other than some localised skin irritation where it is all stuck to your head, and to help with this Zoë sees a dermatologist. The other potential toxicities: 1. your bank balance: 2. lifestyle. Zoë is a living testament that you can live a normal life for 12 months while wearing this device, having two young children, going to work and training for a triathlon.
The Novocure team in Switzerland received her latest MRI and designed a new “map” for me. Last night I had my first attempt at following it… so far, so good. Zoë’s device support specialist (DSS) from Novocure will be coming for their monthly visit on Wednesday and can check my homework.
The manufacturer of Optune say it gives “the power to put GBM on pause” and “put life on play”. They don’t claim it is curative.
I keep reminding myself that Zoë is still having LOTS of active treatments.
Zoë calls these her “pillars” and Steve Barclay would be proud of her holistic approach, which he seems to think is a better idea than having a 10 year cancer plan:
– diet/lifestyle changes to improve gut health — that might take a hit with the upcoming “all-inclusive” break! 😉
– triathlon training to improve mental health and fitness – lots of runs, cycles and pool swims
– Optune — now optimised to slow this new tumour growth
– “off-label” medicines for diabetes, high cholesterol and worms — none of which Zoë (hopefully) has, but all drugs which have links/slight evidence for improved outcomes in cancer patients
– the personalised cancer vaccine — the latest results from Germany show her immune system is having a strong response to that therapy, we have to hope that is having an effect
So when I say she will start more treatment after the holiday, in a way she already has! She will just be deciding, for this moment in time, whether to:
a) “Slash and burn” — as I once heard chemo described as
OR
b) “Shoot for the moon” — unlicensed (for her condition) immunotherapy
b) does not going preclude a) — but a) could compromise the effect of b)
Optune is sadly not available on the NHS. NICE evaluated it (see 1.2.26), and basically said “nice idea, it works, too expensive” — they have to put a cost on month of life given (no “magic money tree” remember). We also tried to get our health insurance to pay — easy we thought, we have “Advanced Cancer Cover”, and this sounds like a really advanced treatment. Would you believe, they said:
they were “by no means disputing that the recommended treatment is not medically or clinically appropriate” but that they were “simply assessing the treatment request in line with the plan’s benefits, terms and conditions“. They went on to assure me that “this case has been reviewed at senior level” —well thanks guys, glad you got your best people on it!
Vitality Health Insurance
“Nice idea, it works, but we ain’t paying” – Zoë did fortunately get access to the treatment thanks to a very generous benefactor.
A lovely lady we came to know in the BT community campaigned really hard to get it on the NHS and back on the agenda in Parliament. She ran a successful petition, but sadly couldn’t get enough signatures for a parliamentary debate and she didn’t even get a decent, considered, sensible response from the DoHSC. She had to enrol on a clinical trial in Switzerland to gain access to the treatment.
We and our MP Lawrence Robertson are having a similar experience with the DoHSC. He writes to them to ask how Zoë gets access to cutting-edge cancer treatments through things like the CDF, IMF and Cancer Vaccine programmes — which Zoë’s doctors have no idea how to access. The DoHSC scratch their heads and write back to Lawrence to say they are not sure. I have heard other caregivers/advocates told by their oncologists that they are “peddling false hope” to their loved ones — yet it is OK for Sajid Javid to pedal this “false hope” to Zoë and I on Twitter:
Legendary parliamentarian Dame Tessa Jowell, might be turning in her grave. She, like Zoë, got access to Optune and wore it in parliament giving an incredible speech which gained a standing ovation. Dame Tessa’s family run a charity, the Tessa Jowell Foundation.
In a weird quirk of fate (or was it God?) I met that family, a long time ago, as I once gave Dame Tessa and her daughter Jess Mills a lift! I was volunteering as an Olympic Family Assistant at the London 2012 Olympics. Dame Tessa was the Deputy Major of the Olympic Village, and I was assigned to her as a driver for a couple of days. I dropped them off at an evening event in town which featured none other than our current Princess of Wales. After they had departed I discovered that Tessa had left some important parliamentary papers on the back seat, so called her back immediately and arranged to return them. (I am probably due a peerage once this selfless nationalistic act comes to light — to think what I could have sold to the tabloids!)
I really hope that more UK patients can access Optune soon — it may not be a cure, but according to the data it works! It is also applicable to other parts of the body, not just brains. There is a large trial running at the moment in lung cancer, which is potentially showing promise. Maybe if more patients are using the device, this will drive better economies of scale for the NHS and help out brain tumour patients too. I just want all patients to have access to the treatment like Zoë does.
In November 2022, the UK head of Novocure attended the All-Party Parliamentary Group on Brain Tumours (APPGBT) — you can read the briefing and the minutes of the meeting on the Brain Tumour Research website. Hugh Adams, Head of Stakeholder Relations from the charity, also attended the meeting.
Concerned about the lack of progress in improving options and outcomes for brain tumour patients and their families, the All-Party Parliamentary Group on Brain Tumours (APPGBT) launched the ‘Pathway to a Cure — breaking down the barriers’ inquiry in 2021. The charity Brain Tumour Research provide the secretariat for the APPGBT, and the upshot of all the written and oral evidence that has been read, heard and collated is ‘The Report’.
The report will be published on Tuesday 28th February, the eve before Brain Tumour Awareness Month and the day before Zoë’s next MRI in London (6 weeks after her last); undoubtedly a pivotal point in Zoë’s cancer journey, but also that of the 33 people who are diagnosed with a brain tumour every day in the UK.
But before that, the one thing all the medical professionals agree on — we need a holiday!
Brain tumours are the biggest cancer killer of children and adults under 40
Over 5,300 people lose their lives to a brain tumour each year
At least 88,000 children and adults are estimated to be living with a brain tumour in the UK currently
Brain tumours reduce life expectancy by on average 27 years – the highest of any cancer
Just 12% of adults survive for five years after diagnosis
Brain tumours are the largest cause of preventable or treatable blindness in children
Over £700m is spent on cancer research in the UK every year, yet less than 3% is spent on brain tumours
https://www.thebraintumourcharity.org/get-involved/donate/why-choose-us/the-statistics-about-brain-tumours/
#teamzoe 
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