It has long been difficult being on a ketogenic diet, especially when eating out. Diet Menus is a useful website which makes it that bit easier to figure out what you can have depending upon which type of restaurant you’re eating out at…
Nice to see this drop through the letter box… Couldn’t have imagined seeing anything like this kind of article 5 years ago being published by such a reputable charity.
Already feel like one hurdle has been jumped over as research into cannabinoids and brain tumours is now being recognised as legitimate and not just and excuse to get cannabis legalised which is what it felt like we were being accused of back in the day when we first started fundraising and campaigning for more research…
If you’d like to make a donation to The Brain Tumour Charity, please consider doing it via our supporter page
Absolutely thrilled to be able to share this – back in 2016 very few people had even heard of CBD and anyone who associated the words cannabis and medicine was more likely than not derided as a hippy wanting to legalise pot.
At Make William Well we proposed and helped fund the first ever research paper into cannabinoids and childhood brain tumours back in 2017 and were told at the time it would likely be a decade before a clinical trial could happen…
How things have changed! We started supporting The Brain Tumour Charity a couple of years ago since we wanted ALL cannabinoids (not just CBD) to be researched for their effects on brain tumours and were told personally by their CEO Sarah Lindsell that the charity would do everything possible to make this happen…
Even then I was sceptical… until the start of the year when I was told in confidence about this. Ok, it’s not focussing on childhood brain tumours but hey, I’m still blown away.
To have the guts to push for this in the face of a much biased public when it comes to medicinal cannabis is so brave and just goes to prove how the charity does exactly what is says it will do – speaks to those affected by a brain tumour and takes action
Click here for details
If you’ve followed our page for a while you may have noticed that we’re not posting much about our son William who is the inspiration for Make William Well. This is a deliberate decision since we want to keep our family life separate from our campaigning/ fundraising efforts.
However, we thought some of our followers would like to know the results of William’s latest scan which showed no progression, as it has since his third surgery in early 2019. We’ll continue to give annual updates although for the reason above we’ll not be announcing the results of each scan.
It has been difficult thinking of how to write this post, which a large part of me, for many reasons, want’s not to write, so I’ll start with a bit of background.
When it became clear, over three years ago, that The Children’s Brain Tumour Research Centre in Nottingham wouldn’t consider carrying out research on William’s tumour type (ependymoma) and the cannabinoid THC in the UK we looked elsewhere and found out that there was a research centre in Australia which was already looking into another childhood brain tumour type and the effect of cannabinoids, including THC. By introducing them to the team at Nottingham, who have expertise in ependymoma, it was possible to have William’s tumour type included in the study which has now been published…
We were aware all along that “following the science” wouldn’t necessarily give us the answers we “wanted” but at the same time we just wanted to understand the truth behind whether cannabinoids “work” on childhood brain tumours – you can read the full article by clicking here.
From this research it does not appear that cannabinoids have any anti-cancer effects on childhood brain cancers. But the research was only tested on high risk types of medulloblastoma and ependymoma, identified by the expression of specific genes – without doing the research it’s not possible to say what the effect of cannabinoids would be on other genetic sub-types.
There is, however, strong evidence to suggest that cannabinoids have some effect against adult glioblastoma cells so clinical trials in these types of brain cancers should still take place.
We have long-suspected, though, that it’s a combination of cannabinoids as well as the ketogenic diet, or even just the diet, which have helped William, perhaps alongside conventional treatments. If anything we hope that this research emphasises the fact that cannabinoids are well tolerated, in particular alongside conventional therapies although one cannot completely rule out the potential psychological side effects, particularly in children, as identified in this article.
We also hope that parents will consider diet more in terms of it playing a potentially important role in combating tumours. After all, a research study has already demonstrated a link between ependymoma and anti-cancer effects of the diet – click here to see the article.
As with many other charities, organisations, supporter groups etc., 2020 certainly knocked us at Make William Well off our stride as those of you who follow us may have noticed by the lack of blog posts over the last year.
In 2021 though we’re hoping to get back on track and if all goes to plan we’ll have a few exciting announcements to make – we may not have had much to say recently but behind the scenes a lot has been happening.
In the meantime we’ve treated our website to a bit of a makeover – we now hope it will be much more easy to navigate.
Much of our progress to date can be found in our blog – if you don’t want to risk missing out on a blog post then why not submit your email using the box to the side or below (depending on what you’re using to read this)?
Taken from a report produced by The University of Nottingham – original can be downloaded here
Is there a role for Cannabidiol in the treatment of Children’s Brain Tumours?
Project Update November 2019
Make William Well has generously supported a research project at the Children’s Brain Tumour Research Centre examining “Is there a role for Cannabidiol in the treatment of Children’s Brain Tumours”.
We know that Cannabidiol (CBD) is widely used by brain tumour patients, sometimes with considerable success. But, we need to objectively understand how CBD affects the cells, and why the results patients and families are reporting occur. This knowledge is essential in order to determine what the therapeutic dose of CBD might be. Without this, Clinicians or families may inadvertently be too conservative or liberal in their dosage, and not achieve optimum results for the patient.
We last provided an update to Make William Well in July 2019. Since our last update, 3 studies that we highlighted have now been concluded. These are:
- Examining to what extent the presence or absence of oxygen (the latter mimics the conditions within the brain) in tumour cells treated with CBD, has on markers within the cell which indicate the beginning of the process of cell death.
- Some patients are taking cannabis oil as an adjuvant therapy for their brain tumour. The treatment is to take the oil for CBD 3 days on, 3 days off. It is not yet understood how this pulsed action affects tumour cells. We have replicated this treatment on our laboratory cells, to understand what impact it has on the cells.
- Investigated in further detail how CBD affects the cells receptors, so that it can be better understood the effect the drug has on tumour cells.
This research could have considerable clinical benefits, and therefore it is very important that any conclusions we draw are able to stand up to international scientific scrutiny. To achieve this, we are now in the process of detailed examining all of our data from the project. This process takes several months, and we expect to make firm conclusions in Spring 2020.
Once completed, we will submit our results for scientific publication. With this in mind, we are submitting abstracts to major scientific conferences, as these events are a key route to disseminating the knowledge we have gained to an international audience of scientists and clinicians.
International Knowledge Sharing
Although our laboratory phase has currently moved to analysis, we are still developing our international collaborators and planning the next stage of our studies.
Professor Richard Grundy visited The University of Western Australia in September to learn first-hand about their CBD research studies focussing on medullblastoma. Professor Grundy spent time with Dr Clara Andradas Arias, PhD Post-doctoral Research Officer, Telethon Kids Institute, Perth, Western Australia. Clara is an international Post-doctoral Researcher in the Brain Tumour Research Lab at Telethon Kids Institute. She completed her PhD in Spain, at the Complutense University of Madrid, in a world-leading laboratory focused on the role of the endocannabinoid system in cancer physiopathology and the use of cannabinoids as potential anti-tumour agents. Clara continued her career at MD Anderson Cancer Centre Madrid, identifying alternative therapies for HER2+ breast cancer patients that are resistant to standard therapy. In 2017, she moved to Australia to join the Brain Tumour Lab at Telethon Kids Institute, where their search focuses on understanding paediatric brain tumours biology and finding more effective treatments to improve survival rates and quality of life for patients. Specifically, Clara works in a collaborative project with Zelda Therapeutics, studying the potential anti-cancer effects of cannabinoids in childhood brain tumours. Clara has a broad expertise in. cancer signalling, pre-clinical cancer models, drug therapy and cannabinoid research.
The CBTRC’s CBD research has focussed on ependymoma, and Paediatric High-Grade Gliomas, and this international collaboration has been an invaluable opportunity to share data into how CBD affects cells in other types of paediatric tumours, with the data to date looking consistent across both laboratories. To share the knowledge more widely, Clara visited Nottingham in October and presented to researchers in Medicine, Pharmacy, and paediatric oncology Clinicians and Nurses.
Whilst our current focus is on analysis, we know there is more research that needs to be conducted to truly understand CBD and how it can most effectively be used to treat paediatric brain tumours. We have recently applied for two further MSc students to join us, potentially in February 2020. These projects will focus on further understanding the impact of the current adjuvant usage of CBD by patients on tumour cells, and further understanding the processes and changes that CBD had on cells in conditions with and without oxygen. Combined, this will provide further insight into how CBD interacts with tumours. Meanwhile, to start taking this research to patients, Dr Madhumita Dandapani, Clinical Associate Professor and Consultant Paediatric Neuro oncologist at Nottingham University Hospitals Trust is developing a Ketogenic Diet & CBD Clinical Trial application, for a funding application in 2020.
Once again, we would like to thank the supporters of Make William Well for their significant contribution allowing us to study the impact of an emerging therapy for children with brain tumours, and how it can be used for maximum impact, with minimum harm.
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
Less than a week to go until the second ever UK Paediatric Brain Tumour Symposium and I’m still struggling to comprehend the fact that I’ll be sharing a stage with the likes of Prof’s Grundy and O’Sullivan, both of whom I have the utmost respect for
Although I have spoken previously about our journey, I am unbelievably nervous about the prospect of speaking in front of an audience of seventy people which will include parents as well as medical professionals
Hopefully my contribution will go some way towards making clinical trials into cannabinoids and childhood brain tumours happen sooner – if you would like to help then please consider making donation to our Supporter Group
I attended the first ever one held last year and it was really informative. This year topics include cannabinoids, the ketogenic diet and proton beam therapy so I guess it’s quite appropriate my being there to talk about William’s journey
I’ll post again nearer the time although there are limited places (it’s free to attend for parents and caregivers) so if you want to come along I suggest booking your place now by clicking here
Hope to see some of you there, Steve (William’s dad)