Brain tumour information – dedicated resources for people with a Glioblastoma (GBM)
People who are living with a Glioblastoma (GBM), at the point of diagnosis or at recurrence, tell us that hours are being spent searching for treatments for GBM that sit outside the current NHS standard protocol. The current NHS standard protocol for treating a GBM can be found here.
We know that there is a huge source of knowledge within the brain tumour community about novel treatments that would benefit people who are living with a GBM. These are novel clinical treatments that might make a difference, they may not be mainstream but there is some evidence of efficacy. We’d rather this information was in one place, to save you spending duplicative time looking for potential treatments, when maybe you’d rather be taking a walk in the sun, or planning your next break, or spending time with your family and friends.
The information here has come from the community and is for the community. We are not recommending these treatments, just signposting and sharing what information there is so that you can begin to have further conversations. Only you know what your appetite for risk is, what your context is and what your values are. This information will be updated regularly.
Here you can read about current trials and novel treatments and therapies. This has been compiled to save you time researching, and has been developed with the GBM community.
Coaching with brainstrust
As coaches we start by listening, then we listen some more, then we ask questions. By listening, questioning and collaborating we can help you understand what’s important to you and prioritise what matters. We can help you come up with a plan to help you reach specific goals.
If you’re considering GBM treatment options and are struggling to work out how you values and priorities might impact your decision, coaching can help you navigate this decision. Or if you’re a caregiver struggling with the challenges of a GBM diagnosis, coaching can help you plan for the challenges of caring so that you and your loved one are living the best day possible.
This information has been made accessible by the family of Philip Jones, who climbed 3 peaks in Wales to create this legacy for Philip.
A Love Remembered
Philip Edwin Jones
“I Wish You Rock”
Help fund our mission
Our work leads to a 20%* decrease in loneliness for people we support.
Just £5 a month could help us host our monthly Glioblastoma meetup helping us connect more people with others who understand.
*See our impact report for a full break down of our impact in numbers