So, a week last Wednesday the 2019 UK Paediatric Brain Tumour Symposium took place in Nottingham. The venue was different to last year and unfortunately (well, fortunately for camera-shy yours truly) it was not recorded this time
It was great meeting other parents (one of whom came all the way from America) as well as others like Mary (pictured on the right with her husband) from Astro Brain Tumour Fund which gave £45,000 towards the CBD Project
In this blog I’ll cover the presentation on Cannabinoids, my own presentation and some of the others which were on topics such as the Ketogenic Diet, Proton Beam Therapy and Acceptance & Commitment Therapy as well as new ways of 3D Modelling Tumours
Prof Grundy (world renowned childhood brain tumour specialist at the Children’s Brain Tumour Research Centre and pictured third from right in the top photo) gave a brief overview of the history of medicinal cannabis and then went on to talk about the results of the CBD Project we proposed and helped fund – most of the data can be found here
Although no new information was given as part of the main presentation (see Q&A below) it was great to hear him say that it was certainly worthwhile looking into CBD and that they’d like to progress on to Gold Standard Clinical Trials
Prof Grundy also pointed to the unknown effects on the developing brain and illegality in terms of why other cannabinoids such as THC weren’t being looked into
My personal thoughts on these last few points are:
- Why do clinical trials have to be Gold Standard? They take too long, are too expensive and clearly haven’t been very good in terms of coming up with effective treatments for childhood brain tumours
- The law was changed last year and THC is now legally available on prescription albeit privately and at significant cost and with minimal clinical support
- Most conventional treatments cause significant mental and/ or physical damage (and may even cause secondary cancers) – how can it be so unimaginable to consider giving a drug which MAY have effects on the developing brain?
What we at Make William Well are calling for is for Adaptive Clinical Trials (which are far cheaper and produce faster results) to be carried out on a multitude of cannabinoids – this way more children could be given the opportunity of sooner access to paid-for quality assured medicinal cannabis products under close clinical supervision
I believe the current system of Gold Standard trials has failed our children – only one drug has EVER been specifically developed to treat a childhood brain tumour. We’re still resorting to hand-me-down treatments from adult cancers (which are very different biologically to their childhood equivalents) and are CUTTING (via surgery), BURNING (via radiotherapy) and POISENING (via chemotherapy) our children with decades old inappropriate approaches when Cannabinoids are starting to be shown to be potentially effective but are currently a long way off being prescribed on the NHS
I believe there needs to be a sea-change in the way we go about looking for childhood cancer cures and I believe that pushing for Adaptive Clinical Trials is the way forward
You can help – please consider making a donation to our Brain Tumour Charity Supporter Group – you could even organise an event like the parents of one child who raised over £3,000 for us in their son’s memory
The CBD Project might never have happened without your support – together we can make Adaptive Clinical Trials happen NOW or wait years for Traditional Clinical Trials to yield results – it really is a stark at that
Q&A – answers to some of the questions that were asked after the presentation:
- Can CBD be used alongside Chemotherapy?
- Chemotherapy works in different ways to CBD so there shouldn’t be any adverse effects (I would say always check with your consultant and be honest about exactly what you are using)
- Has an effective dosage been established?
- A figure of 50 was given although I’m currently awaiting a response in relation to whether this could be translated into a mg per kg figure
- What’s the best route of administration?
- Nasal spray was stipulated as probably being the best route
I really appreciate the positive feedback I’ve had so far but I know my presentation could have gone a lot smoother… there’s not much that could have prepared me for a sea of faces reacting to me telling them about the two and a half years from diagnosis to hospice referral…
Khadijha Sundus (centre in the picture) from the Brains Trust (which organised the Symposium) gave an impassioned presentation on the work of their charity and how people can go about fundraising for them
Lisa Storer (pictured third from left) gave a presentation around the Ketogenic Diet and spoke about some of the research the team at Nottingham have been doing into how certain brain tumours may be more susceptible to being starved of glucose than others, especially when administered alongside radiotherapy
Dr Sophie Thomas gave a presentation on Acceptance & Commitment Therapy and spoke about a trial they’re looking to start next year aimed at 11 to 24 year olds – get in touch if you’re interested in having your child take part
Nic Woulters, whose mother presented at last years Symposium, gave an inspiring presentation from the perspective of a teenage brain tumour survivor
Dr Franziska Linke gave a presentation on Modelling Medulloblastoma in 3D and was able to demonstrate how this new method for researching the effects of chemotherapy on cancer cells can be more accurate in comparison to 2D methods
Amy Davies from the Christie Proton School, Manchester, gave a presentation on Proton Beam Therapy. Until recently this type of radiotherapy was only available abroad and, although it is supposedly no better or worse than “standard” Photon Beam Therapy at killing cancer cells, less radiotherapy is delivered to other parts of the brain resulting in fewer side effects
It was interesting to hear how safe this technology is being purported to be versus how it was described to us not long ago when it was only available abroad whereby we were told that many of the side and long term effects were not fully understood… I brought this up and was told that in the UK much more time is spent on planning in order to avoid such complications…
I only remembered afterwards about being told a couple of years ago how Proton Beam Therapy hadn’t gone through proper Gold Standard Clinical Trials in comparison with Photon Beam Therapy…
Hugh Adams from Brain Tumour Research presented a SWOT analysis on spreading awareness of the need for more research into brain tumours. It would be amazing if we could work together to help achieve the goals above…
Please note, this blog content is just my own interpretation from the symposium as a non-medical professional. Please keep your medical team fully advised of what you are doing