CBD Project – Further Developments

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

Symposium 2019 Group Shot
Cannabinoid Funders, and Researchers at The Brain Tumour Summit Event in November 2019, Nottingham.
L to R: Stephen Frost (Parent and founder of Make William Well), Dr Lisa Storer (Senior Experimental Officer working on the project), Emma Pearson (University of Nottingham, Senior Development Manager (Health)), Professor Richard Grundy (Principal Investigator on the Cannabinoid Research Study), Mary and Robbie Burton (Astro Brain Tumour Fund)

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.

Laboratory Studies

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George Lockwood, Research Technician on the CBD project

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:

 

  1. 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.
  2. 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.
  3. 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.

Further Studies

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.

UK Paediatric Brain Tumour Symposium – REVIEW

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Introduction

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

Cannabinoids

RG Presentation

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:

  1. 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
  2. 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
  3. 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

#ACureCantWait

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

My Presentation

SF Presentation

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…

I’ve uploaded a copy of my presentation with notes which can be found here although most of what I spoke about is available on our website

Other Presentations

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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

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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

ACT

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

Nic Woulters, whose mother presented at last years Symposium, gave an inspiring presentation from the perspective of a teenage brain tumour survivor

Sus

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

Christie

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…

BTR

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…

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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

Brain Tumour Symposium

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

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UK Paediatric Brian Tumour Symposium 2019

I probably wouldn’t have been up for this had William’s scan not been stable but I’m happy to say I’ll be presenting at this year’s UK Paediatric Brain Tumour Symposium in Nottingham

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)

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Different Cannabinoids and Different Cancers

We have suspected for a while that different cannabinoids (CBD, THC etc.) have different effects on different types of cancer and this article supports that theory (it has been added it to the list of Academic Research Papers that we have been keeping on Cannabinoids, the Ketogenic Diet and Cancer)

We were over the moon when the Children’s Brain Tumour Research Centre agreed to carry out the Research Project into CBD and Childhood Brain Tumours that we proposed and helped fund – our suspicion that other cannabinoids might be important lead to our asking The Brain Tumour Charity if they would be willing to support research into other cannabinoids and that was the basis for why we agreed to start our Supporter Group to raise money for them

The full article can currently be found here

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Generous Donation in Memory of Tommy

As well as to raise awareness and money for more research into childhood brain tumours, we set up Make William Well to provide a resource for other families going through this journey

As such, we receive regular requests for help and we do all we are able to. One of the hardest things about this, on many levels, is hearing back from parents who tell us that their child didn’t make it

We recently received such news from Todd and Becky, the parents of a young boy called Tommy, who had reached out to us previously for advice

On this occasion though they also told us about a fundraiser they had organised originally in Tommy’s memory and then also in memory of Michael Shiel (a dedicated supporter of theirs whose initial idea it had been to organise the fundraiser)

They managed to raise a phenomenal £3,044.48

We confirmed that 100% of all money donated through our Supporter Group is ring-fenced by The Brain Tumour Charity for research specifically into childhood brain tumours and this week the money was paid into our account

Tommy was an extremely brave boy, smiled ‘till the end, never let anything get him down and made his mummy and daddy proud beyond this world

We are humbled by how Tommy dealt with this wicked disease and in awe of his parents for holding such an event in his memory. We’re also grateful beyond words that they chose to donate it via our Supporter Group

If you would like to make a one-off donation or even set up something regular, please visit our Supporter Group Page and be generous so that children like Tommy stand a better chance

1000 Likes!

A massive Thank You to all those who have liked our Facebook Page and stuck with it!

Every Like makes us feel more and more like what we’re doing is worthwhile and gives us the confidence to continue sharing our story and trying to help William and other kids benefit from what he has been through

So, genuinely, thank you so much for sticking with us – to help us celebrate it would be awesome if anyone who hasn’t already donated would support us in helping children with brain tumours by clicking here

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A Cure Can’t Wait

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Ok, so donations are starting to come in at our JustGiving Team Page (thank you so much to everyone who has donated so far) and in just over two weeks time we’ll be setting off on our Hadrian’s Wall Challenge (fingers crossed for better weather than today!)

This year we’ve teamed up with The Brain Tumour Charity and just like in previous years we’re looking to raise money and awareness for a specific purpose.

Two years ago we wanted research into cannabidiol to be carried out on childhood brain tumours so that one day it could lead to clinical trials – that 18 month research project has now been completed!

Back then the prospect of a clinical trial seemed like a pipe dream although with:

  1. recent developments in the press and in law, and
  2. the increasing acceptance of adaptive clinical trials

we now believe that trials into cannabinoids could be imminent, especially given who we’ve decided to team up with…

I recently received a personal email from Sarah Lindsell – CEO of The Brain Tumour Charity and this one sentence, which still makes me very emotional, I believe, says all you need to know about why I am so confident that teaming up with them is the best way forward for William and kids like him:

We are working in a system that is decades old and not fit for a different world. We have to change this, no matter how hard, for the sake of all those with this disease today and diagnosed tomorrow. I can promise you, we will not give up until we have

Discussions with research institutions are happening now in relation to the setting up of adaptive clinincal trials into cannabinoids and gliomas although as usual there are numerous bureaucratic hurdles that need to be overcome and no doubt the intention will be to look into adult brain tumours first…

As I’ve mentioned in a previous post only three drugs have EVER been developed for childhood cancers, only one of which was for a childhood brain tumour compared to the dozens there have been for adults – this is because children are second thoughts in the drug development process and paediatric tumours are usually very different from their adult equivalents

Please help us change this and for once make children a priority by donating to one of our fundraising pages

I’d like to sign off in the same way Sarah does in her emails to me…

A Cure Can’t Wait

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Wax Forfeit…

Ok so… someone suggested that a good way to increase our sponsorship money for The Brain Tumour Charity would be to carry out forfeits!

The total on our Facebook Team Page stands shy of £400 and the more money raised, the more of me I’m going to be having waxed on 10th August

If you want to get a bit more for your money, I’ll also be waxing more as the number of tickets sold for our Fundraiser increases

And to top it off, if I reach the goal of £3,000 and 100 tickets it will be filmed live on Facebook…

So, here’s me signing off safe in the knowledge that given how many donations we’ve had so far and how many tickets we have sold, there won’t be a whiff of wax a week on Saturday!!!

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All Party Parliamentary Group on Brain Tumours – the Ketogenic Diet

I attended this event last week – it was held at Portcullis House just opposite Big Ben and the Houses of Parliament.

I was invited to The All Party Parliamentary Group on Brain Tumours, basically a meeting held to discuss brain tumours attended by various members of parliament, by the charity Brain Tumour Research.

During the last meeting, which I was unable to attend, Dr Wai Liu, who I went to see present at St Georges University last year, gave a presentation on Cannabis (minutes here). This time the main topic was the Ketogenic Diet.

The main speaker was Sue Wood from Matthews Friends (who was there with Matthews mum and founder of the charity Emma Williams) and she gave an excellent presentation on the likely reasons for why the diet might influence the development of brain tumours.

There were also first person perspectives from a medical professional and an extremely knowledgable researcher whom I had met previously, Andrew Scarborough. They both recounted compelling accounts of how they had used the Diet to manage their own brain tumours.

It was clear from the event that much more research needs to be done before the diet can be recommended clinically although there seemed to be a general consensus in the room that those diagnosed with a brain tumour should at least be given information on the potential benefits.

Through speaking to those involved with the diet as well as parents who have asked for my advice further to Williams progress, I would say that at best the situation is confused and at worst there are medical professionals who (extremely ignorantly in my opinion) vilify the very suggestion that such a diet should even be considered.

As mentioned above, further research is clearly needed although in my opinion patients should be given information on the potential benefits of such a diet on brain tumours and at the very least those who so vehemently oppose the diet should be properly educated.