NorthWest Biotherapeutics Inc (NWBO)

[Lykiri]

Thanks for sharing Peter.
I've been closely following Sam's heartbreaking story for a while now.
Here's the latest update:

24 december 2023
by Mauricee Bravo-Hibberd

Merry Christmas from us five!

Sam’s finally on his four day Christmas break from radiotherapy and is officially half way through his 6 week cycle!

Apart from the hair loss which we expected, he seems to be responding really well along with his immunotherapy drugs. The foot drag is gone and his mood and sleep are so much better. It’s so nice listening to him plan our Christmas week!

We’ve taken advantage of his mobility improvement and we’ve been out a lot in the last couple of weeks including punting in Cambridge before one of his daily radiotherapy sessions! Lovely seeing him be playful and sing along to the radio in the car when one of our wedding songs was played yesterday

Chemo is still a no go as his liver function hasn’t improved much. We also had to hold some of his privately sourced immunotherapy drugs because of that and because his platelets have also dropped. He’s now been referred to Hepatology and is awaiting a liver scan. His peripheral vision loss to the right eye is being monitored.

We’ve also had his second consultation with the Germans on Monday. Sadly they can’t work with his current mutation results. And just found out from his local oncologist on Thursday that after all the chasing, only a panel sequencing was done rather than full. The pathologists have now requested a further tissue cut for the whole genome sequencing which will hopefully yield results for his CeGat treatment. We’re unlikely to hear from them now until the new year. Frustrating but there is hope.

His American neurosurgeon personally phoned me a few weeks ago so we don’t get charged another consultation fee! Honestly one of the kindest souls I’ve ever met. They’re still keen for a supramaximal resection which is really what we want ideally but with Sam’s current situation, it’s heartbreakingly not feasible.

I have reached out directly with the company that owns Optune and sadly they’re only able to reduce the cost through the NHS or medical insurers. Sadly, he isn’t eligible to apply for individual funding request (IFR) through the NHS regardless of all my nagging. His oncologist advised that there’s no point starting the Optune even if we can afford a couple of months of rounds now if we can’t sustain it throughout the remainder of Sam’s lifetime. It will be soul crushing to start then stop just because we can’t afford it anymore. It’s really sad that a life treatment costs this much. I have raised this with our MP and I got a call on Friday from their office to say this has been passed on to the health ministers. I doubt this will change anything in Sam’s time, but hopefully, others in the future won’t have to go through this.


We have 18 more days until his car fundraising prize draw closes! If we don’t hit our target, one of the UK’s most reputable Tesla brokers have already pledged to sell the car without a broker fee
The number of people who reached out and said they’ll give the car back to us if they win is just a testament of how blessed we are with the people that surround us. Our hearts are so full. Sam and I will honestly just be absolutely happy seeing it enjoyed and parked on one of these people’s drives!

Just want to say thank you to all the news outlets who continue to follow Sam’s treatment journey and spreading awareness of this horrible disease, and the importance of brain tumour research.

Sorry for the long post and the lack of updates and replies. Hectic last few weeks but some really good quality time spent. Thank you to everyone who continues to send us their support, kindness, love and prayers. May you all have the most wonderful Christmas with your families! So much love from us five

https://www.gofundme.com/f/ap2unm-brain-cancer-treatment