websites

It’s easy to get totally lost down the rabbit hole of internet research, and as with anything online you need to make sure you have your wits about you and that you’re proceeding with caution. There are lots of sites, databases, foundations and resources out there who genuinely can help though. Here are those we found most useful during Stu’s 10 months of treatment. 

The Care Oncology Clinic offers a supervised treatment regimen (the COC Protocol) for people diagnosed with cancer of any type or stage.

CARE ONCOLOGY

Empowering patients and their clinicians to go above & beyond to find and access potentially life extending cancer treatments. 

The Stuart Bathers Foundation is working with them to assist patients and caregivers with a bursary to begin working with Act Above and Beyond. You can read more about it here.

act above and beyond

Acting on behalf of everyone with a hard-to-treat cancer.
They work to empower patients and clinicians to exercise their ‘right to try’ new and experimental cancer treatments. You can read more about our experience with them here. 

Act for cancer

A comprehensive website about cancer by Chris Woolhams whose daughter had GBM

CANCER ACTIVE

All the information about Stuarts vaccine treatment - Identifying neoantigens for personalised cancer vaccine design.

cegat - vaccine

Information about Cegats genetic tumour diagnostics and how they provide the information basis for personalised treatment decisions.

CEGAT - diagnostics

Dickson Chemist are a “bricks and mortar pharmacy”, specialising in obtaining unusual or unlicensed medications. We consulted with them via Clinic 158. 

DICKSON CHEMIST

Integrative Medicine brings together the best of conventional, lifestyle and holistic approaches to improve health and wellbeing

NCIM

Jane teaches you everything you need to know about cancer metabolism, no matter what type or stage of cancer you have. There is also a list of integrative oncologists that she recommends via her website or here.

HOW TO STARVE CANCER COURSE 

A charity providing free cancer support and information in centres across the UK and online.

maggies

A charity providing free support and information for anyone affected by cancer

MACMILLAN CANCER SUPPORT

We consulted with one of their physicians to obtain some of the medication that was prescribed for Stu but not available via the NHS

CLINIC 158

A UK charity raising funds for treatment research - lots of information about causes, treatments, support and resources. They also help families to promote their personal treatment fundraisers through PR and social media posts and they have a free Will writing service.

BRAIN TUMOUR RESEARCH

It’s important to feel happy and confident with your care, but sometimes this might not always be the case. So The Brain Tumour Charity have put together information to help you get on the right track from the very beginning and understand what to expect after a diagnosis.

BRAIN TUMOUR CHARITY

Brainstrust are a UK based brain tumour charity providing personalised support to people with a brain tumour and their loved ones.

BRAINS
TRUST

You can read all about the amazing work the Tessa Jowell Foundation are focusing on to bring personalised cancer care as standard for UK brain cancer patients.

The brilliant Brains Trust providing  tailored, age appropriate support resources and community for any family affected by a child with a brain tumour.

LITTLE BRAINS TRUST

A wealth of information about the mediterranean rainbow diet.

The Tessa JowelL Foundation

THE RAINBOW DIET

Guides and checklists for GBM patients and caregivers. Its American based but there is lots of useful information= for worldwide treatments.

MUSELLA FOUNDATION

Helping patients discover and access treatments. myTomorrows is an international platform that links patients facing unmet medical needs to treatments in development worldwide.

MY TOMORROWS

The ReDO project has compiled a list of more than 270 non-cancer drugs for which there is pre-clinical and clinical evidence of anti-cancer action.

RE-DO PROJECT

A useful website for people living with or affected by cancer. They offer advice about living well after a new diagnosis or post treatment as well as support for those in a supporting role as a carer. 

PENNY BROHN UK

This film follows the story of Dr Ben Williams. The film contains critical information for all GBM patients to know upon diagnosis. 

"Is it possible that as a society we could make dramatic progress against cancer if we reconsidered our strategy, as opposed to blindly following a system that has failed to deliver meaningful results in most deadly cancers for over four decades"

SURVIVING TERMINAL CANCER

Home blood tests made easy. They have a huge amount of tests available and ours usually arrived next day with results approx 7 days later. We used them for Epstein Barr, CMV and Cortisol but there are so many on the website. 

MEDICHECKS

Search the ICR for research projects for GBM and brain cancer

INSTITUTE OF CANCER RESEARCH

A really exciting platform for GBM patients and caregivers to access information from a team of experts

Insurancewith offers a range of policies specifically designed for those with a cancer diagnosis, by people who have experienced the condition themselves first-hand.

roon

INSURANCE WITH

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life after

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gbm

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