First Ever UK Paediatric Brain Tumour Symposium

Introduction

I attended this event on Tuesday organised by the charity Brains Trust and found it really interesting.  It was aimed at children and families living with a brain tumour diagnosis, researchers, clinicians and people with a professional interest in brain tumour care.

It was a long day with some really interesting topics covered, from how drugs can be better delivered to brain tumours to promising new therapies to late effects of brain tumours and their impact on education. (click here for a copy of the programme and here for details of the speakers).

Luckily all of the presentations were filmed and posted on YouTube and can be viewed by clicking here so I don’t feel as though I need to cover everything in this blog as I have done for events that I have attended in the past

Instead I’d like to focus in on some of the things I found particularly exciting in some of the presentations.

Drug Delivery

Professor David Walker (Professor of Paediatric Oncology) presented on the challenges of drug delivery and how difficult it is to get the correct amount of a drug to a brain tumour, particularly since it isn’t easy for many drugs to pass through what is know as the blood brain barrier.

One of the approaches David spoke about (there were more in subsequent presentations) was the use of micro-catheters and their use in delivering drugs directly to the tumour although the most exciting thing for me was the prospect of being able to re-visit drugs which had previously been written off due to their inability to cross the blood brain barrier.

Delivering Drugs During Surgery

This presentation was delivered in two sections by Dr Ruman Rahman (an academic assistant professor) and Ms Catherine Vasey (a PhD student).  They both spoke about the exciting procedure of placing drugs within a “container” near to where a tumour was removed during surgery so that the drug could be gradually released at the exact point it’s needed.

Catherine went on to discuss nano-particles and how they could be used to contain drugs and only release them when they enter a cancerous atmosphere.

Electrical Field Therapy

Dr Stuart Smith, a Clinical Associate Professor in Neurosurgery, gave a presentation on electrical fields and how they could be used to disrupt the growth of fast growing cells.  Very exciting but very expensive.

This, in addition to the allure of other promising research that had been presented throughout the morning, prompted me to ask about the availability of such approaches and why our children can’t have access to them now – unfortunately though it was time for lunch and the debate was cut short…

The afternoon session covered some of the practical consequences of having a brain tumour for children from cerebellar mutism syndrome to late effects to the impact on education.

Impact on Education

Louise Robinson, a Neuro Oncology Specialist, working for the charity CLIC Sargent, who supported William whilst we were living in the area gave a really useful presentation on education. She shared some useful links:

A Teachers Guide for Pupils with Brain Tumours

The Brain Tumour Charity – Education Resource

Practical Strategies for the Classroom

Parents Perspectives

A fellow parent of a child with a brain tumour, Pam Wouters, gave a very touching account of her son’s brain tumour journey.  What was really encouraging was hearing another parent speak about the importance of a holistic approach, in particular diet.

It was also humbling to speak to parents who had lost their child but still found the courage to attended the event, many of whom were using their experience to help other children.  I’m not sure I’d have the courage…

The MANY Advantages of Legalising “Last Resort” Medicinal Cannabis for Cancer Treatment

Next Tuesday the deadline for commenting on what conditions medicinal cannabis can be legally prescribed for in the UK will pass (for some reason this fact appears to have gone largely unnoticed).

At the moment the list of conditions includes chronic pain, intractable nausea and vomiting, spasticity and epilepsy but not cancer treatment.  This is because, despite a significant amount of research proving that cannabis compounds can kill cancer cells in the laboratory, there is evidently not as much as for the other conditions to warrant its inclusion (even for use when all else has failed as a last option).

Traditionally, the process of getting to the level of evidence required for the inclusion of a condition typically involves gold standard randomized controlled trials, which cost £millions.

With cancer rates in general continuing to rise and oncologists having to rely on the decades old treatment options of surgery, chemotherapy and radiotherapy for many conditions (only one drug has EVER been developed specifically for a childhood brain tumour), this “gold standard” approach is clearly failing.

Luckily there are those in the scientific community who recognize the limitations of expensive controlled trials and the importance of other approaches such as adaptive clinical trials which evaluate treatments by observing their effects on patients and making changes based on these observations.

I would like to see people being given the option of having medicinal cannabis prescribed to treat their cancer in the first instance although I think at this stage there is something more achievable we should be fighting for – I believe what we currently have is a golden opportunity to advance research into cannabis and cancer

I’m by no means a researcher or scientist but would it be so hard to imagine the benefits of allowing the prescription of medicinal cannabis to patients for whom all other treatments have failed and for this to be done as part of an adaptive clinical trial?

As well as generating much needed clinical research, this would also mean that patients and the parents of children with cancer would have access to medicinal cannabis under the supervision of a doctor as opposed to having to self fund and medicate using drugs of often questionable quality and content.

Finally, who knows, it may end up saving lives…

If you haven’t already, please consider signing our petition to Have Cancer Treatment included in the Medicinal Cannabis Review but hurry, we only have until 4th December.

If you like what you’ve read here please also consider following our Facebook Page.

Have Cancer Treatment Included in Medicinal Cannabis Review

We were so excited when the government announced that it would carry out a review into which conditions medicinal cannabis could be prescribed for, especially since the amount of research required for clinical trials to be carried out into cannabis and cancer has clearly already been met – one clinical trial has already been carried out and two more are in the pipeline (which we assumed would surely at least justify it’s consideration in such a review)…

We were subsequently gutted to read that the draft outline for the National Institute for Health and Care Excellence (NICE) committee* (that will advise on medicinal cannabis prescription), proposes discussion of the following:

  • Chronic Pain
  • Intractible Nausea and Vomiting
  • Spasticity
  • Severe Treatment-resistant Epilepsy

AND NOT CANCER TREATMENT

Please sign our petition to have cancer treatment considered by NICE as something that medicinal cannabis should be prescribed for…

We only have until 4th December 2018 for the draft outline to be changed so please sign and share this petition TODAY by clicking here

For more information and updates please follow our Facebook Page

NICE2

*For more information on the committee, including a list of stakeholder organisations, please click here

#CannaKeto #Cannabis #KetogenicDiet #MakeWilliamWell #Ependymoma

10,000+ Signatures

A huge thank you to all those who have signed and shared our Medicinal Cannabis for Childhood Cancers petition and helped us get over the first magic number of 10,000 which means we can now get an official response from the Government, which is critical in the light of recent developments…

DESPITE A CHANGE IN GOVERNMENT POLICY, CANNABIS STILL WON’T BE PRESCRIBED TO TREAT CANCER

Our next goal is to reach 100,000 so that the petition can be considered for debate in parliament.

Given recent developments, we will now be asking for two main things:

  1. The prescription of medicinal cannabis for childhood cancer patients, as a minimum where standard treatments have failed (regardless of whether the threshold of clinical evidence has been met)
  2. With the advent of an Australian company commencing clinical trials on cannabis and adult brain tumours and the allocation of several million pounds towards research into brain tumours in the UK, we are asking for some of this money to go towards clinical trials into cannabis and childhood brain tumours

PLEASE SHARE OUR PETITION

We need to be pushing this campaign as hard as possible – please help

For more information and to keep up to date with developments, please follow our Facebook Page or click on the box below/ to the side to Follow This Blog.

10000

#CannaKeto #Cannabinoid #KetogenicDiet #Ependymoma #MakeWilliamWell

No NHS Medicinal Cannabis for Cancer Treatment…

Not that it’s entirely surprising but as it became legal yesterday for cannabis to be prescribed for medicinal use on the NHS, they produced this article, stating that it is only likely to be prescribed for:

  • children with rare, severe forms of epilepsy
  • adults with vomiting or nausea caused by chemotherapy

Even with this there are suggestions that only certain cannabinoids will be available for certain conditions – the Times produced this article today suggesting that in the case of Billy Caldwell, the boy whose case triggered the reform, he will still not be able to be prescribed tetrahydrocannabinol (THC) since there is “insufficient high quality or clinical evidence in humans to support the suggestion that THC increases the efficacy of anti-epileptic effect when used in combination with cannabidiol [CBD]“*

Clearly more needs to be done.  I am doing everything I can to make sure that others benefit from what we have been through with William and his brain tumour reduction after starting him on CBD and the Ketogenic Diet.

Please follow our progress by clicking the Follow box on this page or by Liking our Facebook Page, helping us spread the word further in our pursuit for wider access to medicinal cannabis, especially for childhood cancer patients.

Also, please consider signing and sharing our Petition – we’re so close to the magic number of 10,000.

Finally, please contact me with any experiences you have had with cannabis and cancer using makewilliamwell@gmail.com

NHS No

*quote from the British Paediatric Neurology Association

Ketogenic Diet to be Included…

So excited to be able to announce that the “Let’s Talk Cannabis…” event now includes the Ketogenic Diet so covers BOTH of the approaches we started using on William before his brain tumour shrank.

AND, the presenters include one person working on the research project we proposed and helped fund plus another who was instrumental in getting William on the diet – click here to read more about them…

The Facts About Cannabis and Cancer

With many mis-truths circulating about cannabis and cancer, this seminar, which features a doctor working in the cannabis research field, aims to spell out the facts.

I’ll also be talking about my son William’s Journey with cancer, cannabis and the ketogenic diet which isn’t just about another anecdotal story but what we’re doing to make sure that what we’ve been through can help others.

#CannaKeto #Cannabinoid #KetogenicDiet #Ependymoma #MakeWilliamWell #YestoLife

What Canada Legalising Cannabis Means for Research

Although we don’t have an opinion one way or the other regarding the legalisation of cannabis for recreational use, this is encouraging news for research as the BBC article states:

“There is still a lot to learn about the impact of cannabis on the human body. 

Research into medical and recreational cannabis use has long been hamstrung in Canada due to marijuana’s status as a controlled substance, even though medical marijuana has been legal since 2001. 

Funding was hard to come by, access to cannabis for research was restricted, and much of the research being done focused on the dangers of the drug. 

Now, there are signs its new status will boost research and investment into studies looking at both the benefits and the harms of cannabis use, such as the impact of cannabis on issues like mental health, neurodevelopment, pregnancy, the treatment of post-traumatic stress disorder, driving, and pain management.”

With a change in UK law coming into force on 1st November there should be a similar boost over here. Unfortunately there is little mention of cancer, particularly regarding children – please help us change this by signing and sharing our petition.

#MakeWilliamWell #KetogenicDiet #Cannabinoids #Ependymoma