NorthWest Biotherapeutics Inc (NWBO)

[muee88]

Not sure if this has been posted (by Lykiri) before of not:

https://www.gofundme.com/f/glioblastoma-dcvaxl-immunotherapy-vaccine

April 17th, 2024
by Matthew Collins, Organizer
"I eat too much to die, and not enough to stay alive; I’m sitting in the middle, waiting."

Hi all,

I haven’t updated in a while. I’ve been coming to terms with my recent scan, which showed new growth in a different location in my brain. The team is unsure whether a second operation is possible as it’s much deeper in my brain than the previous tumour, but I’m having another scan on 30 April to see if the latest chemo is working, plus give a chance for the DcVax to do its thing. I’ve had my fourth dose, which, coupled with the additional hospital fees, shipping and consultation costs, has now wiped out my fundraiser. In addition, I’m having oncothermia treatment with Dr Paul Mulholland, which I have alongside my chemo. It’s £1000 session, and I’ll need to have 20+ sessions for it to be effective.

The National Cancer Research Institute (NCRI) recently reported that, despite being the biggest cancer killer of children and young adults under the age of 40, spending on brain tumour research represents just 1% of the total cancer spend. This sucks on multiple levels, not just denying young people life-extending treatment options, but knowing that there are cancer drugs out there that could potentially benefit me, but aren’t available on the NHS because they’ve not been through trials for brain cancer and therefore lack ‘evidence’ — meaning that if I want to access these drugs, I have to do a lot of the digging myself and then stump up the extortionate costs. My consultant can’t — and probably isn’t allowed under their license to practice — prescribe them to me.

I’ve paid tax my entire life, yet when I need to access treatments that could extend my life, I have to pay, and at a premium. There’s a two-tier system developing in this country: those that can afford private healthcare, and the poor sods who have to rely on the crumbs of the NHS.
Pembrolizumab, licensed for lung cancer, is a type of immunotherapy vaccine — which has shown promise in treating glioblastoma — would cost me £30,000 for a single dose.

As well as fundraising for treatments, I’ve decided to radically change what I eat, to attack the cancer through diet.

When I was diagnosed I asked about diet. The Registrar who I saw said to ‘eat what you want’. I got the impression she wanted to tag on ‘while you still can’ at the end of her sentence. So I did. Let me tell you folks, that is BAD ADVICE. Everything I’ve read since my tumour recurred has pointed to a plant-based diet, cutting out sugar and refined carbohydrates as improving outcomes for cancer patients. So I’ve made these changes, and do you know what, that shit is expensive, not to mention time-consuming. It’s a privilege to eat healthy; our Western society is fuelled on cheap, convenience foods. If you don’t have the time because you’re busy or you simply can’t afford healthy ingredients, you’re stuffed (figuratively, not literally).

When I tot up the costs of off-label drugs (antivirals and metabolic drugs that may help), supplements and therapies I’m currently taking, my spending is running at more than £2,000 per month, which far exceeds the £700 I get from Universal Credit for having a terminal illness. This is unsustainable.

I’m waiting until my next scan to decide whether to pursue a fifth dose of DcVax — I’d need to go through apheresis again, which costs £10,000 in itself, plus the vaccine costs of £25,000, consultant fees and shipping (£3,000). If the tumour has grown then I’ll see about going down a different immune therapy route — there are ‘high-risk, high-reward’ options like CAR-T cell therapy, but surprise surprise, no trials in this country, so fuck knows how I get access. I’m willing to roll the dice with any high-risk treatment at this stage, I just need to be pointed towards a trial somewhere in the world.

I’m heading down to Velindre this afternoon for some clinical psychology. I’m coping better mentally than I expected but I’m starting to resent how dismissive the stroke consultant was of me at Prince Charles Hospital back in the summer. I’ve since learned from an actual expert that if I’d suffered a brain haemorrhage as large as I did, then I’d likely not be alive. So why the effin’ fuck, given that all my vital observations were perfect, did the consultant not think I warranted further investigation? I lost two months because of that man and I don’t know if that’s what’s going to cost me my life. He and the healthcare assistant who had a go at me for leaving some clothes in the bathroom (I couldn’t walk or use my left arm) can go swivel. I will haunt you. So yeah, probably going to be helpful to vent my frustration to a mind person, get a few things off my chest.

Speaking of which, I gained loads of weight since being on steroids, but now it’s starting to fall off me and I’m caught in the crossfire between wanting to starve the cancer but not starve myself of nutrients and things that are good for the healthy parts of me. Is it possible to do a keto AND vegan diet simultaneously?

Stay beautiful,
Matt x