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Case Studies

Where there’s a Will, there’s a way

Brave William Frost was given less than six months to live when his terminal condition progressed. Then his parents discovered CBD, and a special diet, and everything changed, as Andrew Mernin reports.

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The Frost family were reluctant tabloid headliners in spring 2017. ‘Tot shocks docs,’ declared the Sun newspaper. ‘Boy’s aggressive brain tumour shrinks thanks to CANNABIS compound, parents claim,’ it continued.

The boy in question, William, now seven, did indeed experience remarkable results in tackling a terminal condition after taking cannabis oil.

But the Frosts were somewhat uncomfortable with their moment of red top heat.

The message that ‘cannabis cures cancer’, as the story seemed to pronounce to the world, could be dangerous and misleading; and the column inches devoted to William didn’t reveal the full picture of his journey.

Dad Stephen has since made it his mission to help uncover the true facts about the potential role cannabis can play in fighting paediatric brain tumours.

The family’s charity, Make William Well, has helped to raise £100,000 to support ground-breaking research on the topic; and Stephen is now a regular speaker at insight- sharing events focused on childhood cancers and their possible links to cannabis treatments.

“It’s been so much of a rollercoaster over the last few years that our emotions are almost blunted or exhausted. You can’t really describe how it feels,” he says over the noise of a busy coffee shop near the family home.

“We were basically told he had a brain tumour and probably had five years to live. It was utterly devastating.”

It all started innocuously with little signs; the type fretted over by young parents but downplayed by doctors. William was 18 months old and had just started nursery when he began experiencing sickness and teething issues commonly seen in toddlers.

But he was also finding balancing unusually difficult for a child of his age, and walking with his head tilted to one side.

After several trips to the GP, he was referred to the local eye, ear, nose and throat (EENT) department.

But his parents felt a looming sense that his condition was more serious than the speculated ear problem.

“My wife had been on the headsmart.org.uk website, which supports the early diagnosis of brain tumours, and William had some of the symptoms. Then one night I picked him up and he threw up on me for no apparent reason. That was it, we thought there was something seriously not right here.

“We went to accident and emergency and after a week of tests in which they could find nothing wrong with him, they finally agreed to do an MRI scan. That’s when they found the tumour.

“We were told it was terminal and that there was a five year survival rate. If he had surgery and they could get it out then he might have a chance at longer than that. But if they didn’t, then it would be much shorter.”

The tumour was around the size of a golf ball, near to the centre of his brain. It was diagnosed as a ‘grade three anaplastic ependymoma of the fourth ventricle’. Within days, William was taken into surgery at Queens Medical Centre, Nottingham, and the tumour was removed.

Due to its proximity to critical nerves, however, he was left with partial paralysis on his left hand side. This meant he couldn’t move this side of his face, or swallow properly, and had to be tube fed.

Because of the grade of the tumour there was a significant chance it would likely come back so further treatment was required. William started chemotherapy, but was unable to tolerate the full planned 13 months of treatment.

He was already deaf in his left side, possibly as a result of surgery, and was beginning to lose high tone hearing in his right side, likely due to the chemotherapy. Treatment therefore ceased after nine months.

But the family received the welcomed news that tumour had been “fully resected” and there was no sign of regrowth.

Stephen says: “I don’t think the outlook ever really changed but we were hopeful. We pushed the idea that it could return to the back of our minds and hoped that we’d got it. As a parent, if you’re told its fully resected and your child’s had chemo too, you kind of hope that that’s it. But obviously the cancer was a particularly nasty one.

“He was still a bit wobbly on his feet at the time, but he made a good fight of doing the things other children get up to at that age, like going to playgroup and so on.”

When his balance problems worsened, their underlying fears that the tumour would regrow were realised – and this time it was in an even more precarious place, tangled around the brain stem.

The only option was a “very risky” surgery, which successfully removed most, but not all, of the tumour. The family were then told that William could be considered for Proton Beam Therapy in America. This is a less damaging form of radiotherapy than that offered in the UK.

Yet, although the NHS had approved funding, the centre in America ultimately denied treatment him due to his tracheostomy and the possible complications of travelling to America.

In the meantime, the tumour had regrown exponentially since the surgery. William was fast-tracked onto a six week course of radiotherapy during which sickness was a constant issue.

But the tumour was increasing in size and, despite going through another round of chemotherapy, it’s growth could not be stopped. Doctors gave the family the heart-breaking news that there were no other treatment options available.

“They said, ‘unfortunately that’s it’ and they gave us details of a hospice. We were told that William only had six months maximum left and wouldn’t live to see Christmas.”

And so began a desperate hunt for alternatives beyond what was available on the NHS.

One glimmer of hope was that William’s tumour had the correct profile for the ketogenic diet to possibly have an effect. This is a high-fat, adequate-protein, low- carbohydrate diet sometimes used to control severe childhood epilepsy.

But Stephen and his wife’s search also brought them to CBD.

“We didn’t know at the time if it was possible to go down the THC route, or how we could get hold of it, or CBD that we could trust. This was in 2016 before CBD had become readily available.

“We spoke to our consultant who couldn’t recommend it and said not to bother with it because it hadn’t been through preliminary trials.” Ignoring this advice, they found a private clinic offering a synthetic CBD treatment, which they decided to try in conjunction with the ketogenic diet.

“This was the only way we could get hold of what we could trust was CBD and they charged us a lot of money for quite a small amount.

Then six months after being told nothing more could be done for William, they noticed an improvement in his condition.

An MRI scan revealed that his tumour had shrunk to around a third of its original size.

“We don’t know what worked exactly, but we know the tumour shrank. Was it the CBD? Was it a combination of this and the ketogenic diet? Radiotherapists even argue that it could be delayed effects from the radiotherapy, which would be surprising given how long after the radiotherapy it occurred.

“We don’t know whether there was a synergistic effect between the CBD, the diet and the delayed effects of the radiotherapy.”

The tumour remained stable at its reduced size for around 18 months until scans showed that it had started growing again. William underwent another surgery, removing almost all of the tumour, before more chemotherapy.

He continued on cannabinoids and the ketogenic diet and, by late last year, his scans were clear.

He now takes a non-synthetic CBD product containing more cannabinoids than his previous regime, with the aim of killing the remains of the tumour.

He is also undergoing metronomic chemotherapy (lower dosage with less side-effects) continuing on the ketogenic diet alongside his dad.

“We hope this will keep it under control but I’ve also read certain lab-based studies that suggest it can actually be killed by cannabinoids. That’s the hope.”

The family’s charity, Make William Well, has teamed up with Brain Tumour Charity to raise funds for vital research that could ultimately shape treatments for other children like William.

It has helped to raise over £100,000 for ongoing research led by the Children’s Brain Tumour Research Centre at the University of Nottingham.

The research aims to answer the question: Is there a role for cannabidiol in the treatment of children’s brain tumours? The researchers say: “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.”

Stephen is hopeful that other cannabinoids, including THC, might also be included in such research in future.

“From the outset in pushing for this, our aim was to get all cannabinoids researched so that eventually they can be issued free of charge on the NHS once they’ve gone through the clinical trials.”

Specific areas of the soon-to-be-concluded lab-based studies include to what extent oxygen levels in tumour cells treated with CBD, have on markers within the cell which indicate the beginning of the process of cell death.

Also, some patients are taking cannabis oil as an adjuvant therapy (applied after an initial cancer treatment) for their brain tumour.

The treatment is to take the oil for CBD three days on and three days off. But it is not yet understood how this action affects tumour cells. Furthermore, the researchers have investigated in further detail how CBD affects the cell receptors, to better understand the effect the drug has on tumour cells.

According to the researchers: “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.”

The findings are expected imminently, from a study which is underpinned by global collaboration.

Lead researcher Professor Richard Grundy visited The University of Western Australia as part of the study to learn first-hand about their CBD research studies focussing on medulloblastoma.

He spent time with Dr Clara Andradas Arias, an international post-doctoral researcher in the Brain Tumour Research Lab at Telethon Kids Institute in Perth.

This international collaboration has enabled the sharing of data on how CBD affects cells in paediatric tumours. Further studies include a planned ketogenic diet and CBD clinical trial, which is hopefully taking place this year.

More generally, as UK health authorities continue to call for more evidence of the medical benefits of cannabis, Stephen would like to see investment in “adaptive clinical trials”.

These are trials in which modifications in response to the participant’s outcomes and other factors such as side effects are allowed after it has begun, without its validity or integrity being questioned.

They are distinct from ‘double-blind, placebo-controlled clinical trials’ which are considered the gold standard in medical testing and typically relied upon by the pharmaceutical industry to prove the benefits of new drugs.

Doctors and campaigners who advocate medicinal cannabis argue that such trials are not compatible with cannabis medicine. They argue that the plant is too complex and is not a single molecule pharmaceutical product that these trials are designed for.

They also point to the growing body of observational and case study data supporting the use of medicinal cannabis to treat various conditions.

Stephen says: “Why are such clinical trials the 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.

“Adaptive clinical trials, which are far cheaper and produce faster results, should 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.

“There are hundreds of papers written about cannabinoids and the evidence that it works in the lab is overwhelming. But there just aren’t the gold standard clinical trials.

“There are just four drugs that have ever been developed specifically for childhood brain tumours, the rest are hand-me-down treatments from adult cancers, which are very different biologically to their childhood equivalents.

“We are cutting, burning, and poisoning 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.”

While continuing to push for research, Stephen is also regularly contacted by parents of other children facing similar challenges to William.

“I try to help, and I get a lot of questions about dosages, but I would never recommend one thing or the other. There’s generally massive confusion out there about cannabis medicine.

“A lot of people think, like I did before we went through all this, that the whole medicinal cannabis campaign is just led by people wanting to legalise marijuana for recreational use.

“They don’t see the evidence which proves that it can work on brain tumours, certainly in the lab. For whatever reason, the clinical research isn’t getting done and that’s now why we’re campaigning.

“Its one thing getting it legalised, but without the research you’re still not going to know about the dosages or side- effects. If I was a doctor I wouldn’t want to give a drug that hadn’t been through clinical trials. Also, different cannabinoids could have different effects on different cancers. This is where the research needs to go and in a way that reflects the complexities of the plant.

“What we want to do with Make William Well is to say ‘there is a potential new advancement here, let’s get the focus on kids.’ Three years ago I didn’t think we’d have a chance of getting a research study done, yet we proposed it, the centre agreed to it and we helped to raise the funds to do it. After that we didn’t think there was a cat in hell’s chance that we’d ever be looking at clinical trials, but now that’s hopefully realistic as well.”

To donate to Make William Well visit www.makewilliamwell.com.

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Case Studies

From catwalks to cannabidiol – a former fashion model’s journey to CBD discovery

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Model Kelly Brooks was forced to give up her dream career when Lyme disease left her unable to get out of bed. She tells Cannabis Health how she is rebuilding her life with the help of CBD.

A few years ago Kelly Brooks, 27, was living her dream on the catwalks of New York, modelling for Jean-Paul Gaultier and gracing the pages of Vanity Fair, Glamour and Italian Vogue.

Now her life couldn’t be more different. In 2018 she moved to the UK with her husband Layton and the couple are looking to start a family in their hometown of Ringwood, Hampshire.

Kelly is the operations manager of a five-star spa and teaches barre fitness classes to those living with an illness or injury.

You would never know that she has endured years of symptoms such as agonising joint pain, extreme fatigue, tremors and at her worst being unable to walk, as a result of chronic Lyme disease.

Growing up in Maine in the United States, Kelly first felt something was wrong in her early teens. She went from being an ‘active, healthy kid’ who was hardly ever sick, to experiencing periods of blackouts and vomiting.

Medics put it down to everything from a sodium deficiency, fibromyalgia and Epstein–Barr virus, to depression, an eating disorder and even attention-seeking. It took almost a decade for doctors to diagnose the tick-borne disease. Even when things took a turn for the worse at the age of 17.

“All of a sudden I was completely exhausted. I went home from school one day, got into bed and didn’t get out for weeks,” Kelly says.

“I had joint pain, migraines and extreme exhaustion – I was sleeping about 20 hours a day. I wish they had taken me more seriously at that point.”

A year later, aged 18, she was eventually tested for Lyme disease at the suggestion of a doctor who happened to be a family friend. It came back positive.

Despite her diagnosis, Kelly was determined to follow her dreams and moved to New York to go to study fashion buying. When a chance opportunity to help out a fellow student ended up launching her modelling career, she ended up quitting college to focus on it full-time.

She was living the dream, walking in runways shows at New York fashion week, working with household brands such as Bumble and Bumble and travelling across the world to Paris and Milan. But she was secretly struggling to balance a blossoming career with her crippling health condition.

“At first I could push through it and rest when I got home, but over the years it became really difficult, especially dealing with the pressure of losing weight – I wasn’t eating enough and was exercising too much – and was struggling to stand for long periods of time. I did faint at a couple of jobs,” says Kelly.

She got into a cycle of treating the Lyme disease with strong antibiotics for several weeks and before returning to the same lifestyle and running herself into the ground.

But as her symptoms became more neurological, leaving her struggling to walk and lift her legs, her then-boyfriend Layton gave her a much-needed wake-up call.

“One evening I came home from doing runway shows at fashion week and I completely collapsed. I couldn’t walk across the room.

“Layton said ‘ I can’t watch you keep doing this to yourself, you need to stop’,” she says.

“It was really hard to give up, I felt like it was so unfair, but by the end, I just wanted to do anything to feel better.”

It was a fellow Lyme disease patient in New York who introduced Kelly to CBD.

“I’ve never really done the herbal route, so I was sceptical,” she admits.

“They sent me a cream and I put it on the joints that were hurting me the most and within a few minutes, the pain had subsided.

“I couldn’t believe how much it helped because I’d had prescription medication for joint pain and nothing had worked but CBD did.”

When the couple moved to the UK to be closer to Layton’s family, the CBD industry was just in its infancy. She struggled to find a good quality, reasonably priced product and was confused by a wealth of conflicting research.

Layton took matters into his own hands to help his wife and reaching out to a colleague with previous business experience, Claudio Santos, they founded CBD Shopy.

Now a leading online retailer, the website aims to help customers find reputable and high-quality products, while also educating people about CBD.

Claudio Santos said: “Studies have indicated that CBD has anti-inflammatory properties and we’ve had numerous customers giving feedback that CBD oil and cream has helped them with joint and muscular pain.”

And Kelly is its biggest advocate, claiming CBD has allowed her to rebuild her life.

“I use the CBD cream on all of my joints every day and currently don’t have the constant pain,” she says.

“I still have some symptoms and when I overdo things it takes me longer to recover, but I’m quite good now at managing how much I can do each day.”

CBD has helped with her mental health too, easing symptoms of anxiety and insomnia.

“I was formerly on sleeping medication, but now I use CBD before bed and no longer have to take it,” she says.

“I do still suffer from depression and anxiety but I have pretty good days where I’m at 80-85 per cent. I even get some 95 per cent days.

“I’m really happy with where I am now.”

To find out more visit www.cbdshopy.co.uk

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Case Studies

“I’m not a zombie anymore”: Why this mum-of-five is speaking out about her medical cannabis use

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Mum-of-five Kayleigh Compston is the first Scottish patient to be legally prescribed medical cannabis as part of Project Twenty21. Now she’s speaking out to tackle the stigma.

“Medical cannabis has one hundred percent made me a better mum,” says 26-year-old Kayleigh Compston.

A mum-of-five, she has recently become the first person in Scotland to be prescribed cannabis legally, having enrolled in Project Twenty21, the pioneering study led by Dr David Nutt.

Kayleigh, who has fibromyalgia and functional neurological disorder (FND), which cause chronic pain, paralysis and muscle spasms, had spent years being prescribed heavy opiates such as morphine to manage her symptoms.

But now she says medical cannabis has allowed her to feel human again.

“There have been no negative side effects from cannabis whereas with pharmaceuticals there were many,” says Kayleigh, who lives in the Shetland Islands with her partner Matthew Ross and is mum to Tyler, nine, Teegan, eight, Tommy-Lee, seven, Teejay, five and Tianna, four.

“The issue with opiates is that your body gets used to it, so the doses get higher and higher and stronger and stronger.

“Now I’m not a zombie anymore, I lead a much more normal life.”

Kayleigh, whose conditions have been known to leave her bed-bound, continues: “It doesn’t take away the symptoms, but it helps you to forget about them and it relaxes my muscles spasms.

“It’s actually made me feel human and I’ve been able to get on with doing things for my kids,” she continues.

“It’s nice to be able to play games with them and drop them off at school – things which I couldn’t do when I was paralysed in bed for months.”

Kayleigh says she is also less reliant on Matthew now, who is her full-time carer.

“It’s hard work with the kids and I still have to rely on him for things, but much less so.”

And the cannabis – which she grinds and vapes in a herbal vaporizer eight times a day – also helps relieve her symptoms of anxiety and PTSD.

Matthew, 25, is also enrolled in Project Twenty21 and previously had a private prescription for medical cannabis to help manage his Multiple Sclerosis (MS).

The project is aiming to enrol 20,000 patients by the end of 2021, creating the largest body of evidence for the effectiveness of medical cannabis. Its goal is to demonstrate to policymakers that medical cannabis should be as widely available, and affordable, as other approved medicines for patients who would benefit from them.

Project Twenty21 is covering the costs of a private prescription up to £150 per product per month for those with Anxiety Disorder, Chronic Pain, MS, PTSD, Substance Use Disorder (as a harm reduction strategy) and Tourette’s Syndrome and researchers will collect data about their quality of life for up to two years.

It is hoped that the findings will make a powerful case for NHS funding.

Despite first trying weed as a curious teenager, Kayleigh never thought about it medically until a few years ago and admits to self-prescribing in an attempt to find an alternative to opiates.

Now they have legal prescriptions, the couple are advocating for wider access to medical cannabis and are keen to speak out to help change attitudes in their home country.

“I feel like the Shetland Islands are quite behind anyway, and some of the older generation still have outdated views,” says Kayleigh.

“There is still a stigma, but I think people need to open their eyes and realise that all the evidence is out there as to how much it actually changes people’s lives.”

“Like any medication, it can have side effects but it’s not what people say it is.”

Kayleigh is starting her education close to home, by being open with her children about her prescription.

“My older three children know what my medication is now. It’s about educating them that cannabis is a medication, just like any of the others I have taken.

“I wanted them to know before they get told that it’s ‘bad’.

She adds: “The children have seen how much better quality of life I have now.

“They know first-hand how much it has helped mummy.”

For more information about Project Twenty21 visit www.drugscience.org.uk/twenty21-is-now-live

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Case Studies

Save your HRT, give me CBD

Going through the menopause hit Jenny hard, with an array of side-effects leaving her exhausted and wanting to hide from the world. Here, she shares her story of how CBD is helping her to rediscover the fun-loving woman she used to be.

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As a woman in my 50s, it’s perfectly normal to be going through the menopause. But while I’ve always known it was coming, I had never appreciated how bad it would actually be.

Menopause, as all the women’s magazines tell you, happens to us all. A few hot flushes, bit of difficulty sleeping, stick on an HRT patch and you’ll get through.

For many that may well be the case, but the reality for me has been so much worse.

The sweating at night has to be one of the most awful parts. Waking up night after night, dripping in sweat, the bed sheets drenched, has become the normal over the past 18 months.

And once I’m up during the night, I can’t get back to sleep. Regularly I get up at 3 or 4am, and go downstairs to watch whatever appallingly bad TV shows are shown at that hour.

I’ll then find myself falling asleep during the day if I’m at home, which I feel is me slipping further down the slope into old age.

Hot flushes happen all of the time. And when we say hot, it’s not just a case of taking your cardigan off, the heat is incredible.

Regularly I’ll be out at lunch, sitting in just a camisole while everyone else is in jumpers, fanning myself down with whatever beer mat or menu card comes to hand.

I may as well just have Menopausal Woman written on my top as it’s so obvious.

I didn’t think the menopause would affect me so much, and I also didn’t expect to cope this badly with it.

I have always had a fantastic social life, going to dinners and lunches several times a week, and I love getting dressed up.

Since the onset of my menopause, with the tiredness and the unexpected hot flushes in particular, I’ve lost my enjoyment of it all.

The worry you’re going to fall asleep at the dinner table (that has happened before, but thankfully in my own home) or aren’t going to feel great when you’re there has seen me decline so many invitations.

Friends are asking whether I’m OK, whether I’m ‘me’, as this is so out of character.

And in truth, over the last 18 months, I do feel like I’ve lost my old self to quite an extent – although in the last few weeks, I do feel like I’m getting her back thanks to a chance discovery while online shopping.

While browsing for some new shoes, I hadn’t felt like going out that day, I came across one of those pop-up adverts for CBD.

I knew it was associated with cannabis but didn’t really know much more than that, but I continued to shop for heels and forgot about it.

That night, again, I couldn’t sleep. Having watched three back to back Judge Judy episodes, which is surely enough for anyone, that CBD advert came into my mind again.

I’d read a lot about cannabis over the past few years and the wonderful effect it had had on so many children.

I’d never had a personal interest in or connection to cannabis, but the fact people in desperate need had been denied it was something I believed was wrong.

For some reason, I decided to search CBD and menopause. HRT for me had been rubbish, so it was worth some investigation at least.

To my astonishment, there were so many stories about the strong connection between the two, the many benefits there could be, how CBD could help with so many symptoms.

I couldn’t believe it. I’m not sure I believe in fate, but there was a reason that random advert popped up on my shoe site that day.

I bought some CBD in my local shopping centre – it’s perfectly legal and readily available, which is something I hadn’t realised.

I thought it must have been a banned substance because of how it’s spoken about in whispers.

It’s not something I feel I could tell my friends I’m using as I’m not sure how they’d react. But discovering CBD has been the most fantastic thing to happen to me in a long while.

The past few weeks have been so much better. I have enjoyed a good sleep for the first time since my menopause symptoms began and am sleeping through the night again.

I’ve also felt so much better in myself, like I want to make an effort and put my make up on and put some nice clothes on.

If I had anywhere to go at present, I’d love to put my heels and best dresses on and get back out there. While I still have hot flushes they haven’t been anywhere near the extent they were before.

This is probably due in great part to the fact I’m sleeping, and sleep is at the root of so much in terms of quality of life, but CBD is said to have mood lifting properties, so that could well be another benefit.

Nothing else in my routine has changed apart from my use of CBD so I can only conclude that is the reason.

The difference in only a few weeks has been a great surprise. I do feel like I have the confidence to start accepting those invitations again.

The COVID-19 lockdown has come at a good time for me, as CBD is doing its thing for me, and I’m getting myself back to a position where I feel like ‘me’ again.

There is undoubtedly a taboo around the use of CBD, which I think is unwarranted.

I think we are far too closed-minded as a society and we don’t talk about these things which seem a bit awkward.

Even trying to discuss the menopause with some people is a conversation-changer in itself.

I do think I’d get some difficult reactions if I talked about my CBD use, which is a real shame.

Id love to share my CBD secret with my friends, and perhaps I will at some point. Or perhaps theyre all already using it anyway.

Jenny did not wish to give her full name.

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