Did cannabis oil save Deryn Blackwell's life?

It's been a while since I've written about the burgeoning business of selling marijuana as a cure for whatever ails you. As I've written before, there exists a mystical faith that is very much like herbalism that marijuana is a magical plant that can cure, well, almost anything, including cancer, glaucoma, autism, ADHD, and many other conditions, when in fact the evidence is rather shaky for most, if not all, of these claims. Regarding cancer, the usual claim is not that smoking marijuana cures the disease, but rather that cannabis oil isolated from marijuana cures cancer, a claim that Rick Simpson has profited from after claiming to have cured his skin cancer with cannabis oil in 2003.

Over the years, I've examined a number of "cannabis cures cancer" (or, truth be told, "cannabis cures" this or that condition) testimonials (e.g., Stephanie LaRue's story). Like most alternative cancer cure testimonials, when you take a closer look, inevitably the case being made that it was the cannabis oil (or whatever derivative from marijuana was used) cured the cancer (or saved the patient's life after complications of therapy) is nowhere near as convincing as the advocates making the testimonial claim. Usually, there is another explanation for how well the patient is doing and/or the link between starting cannabis oil and clinical improvement is not nearly as convincing as it seems on the surface. As with the case of the belief that vaccines cause autism, human beings mistakenly attribute correlation to causation. Add to that a dash of confirmation bias, something we human beings all suffer from, and it's very easy to come to develop an unshakable belief in a post hoc ergo propter hoc fallacy in which something they observed or did before something else happened must have caused that something else to happen, be it vaccines "causing" autism or cannabis "curing" cancer.

I bring this up because there is a new "cannabis cures" testimonial going around the UK that was brought to my attention yesterday. It was about a boy named Deryn Blackwell, who beat leukemia and the very rare Langerhans sarcoma through multiple bone marrow transplants (BMT). The cannabis comes in during his last BMT, when his mother gave him cannabis oil to relieve his symptoms as his transplant appeared to be failing and was overjoyed when her son recovered after having been in hospice for over a month. Her story portrays cannabis oil as being responsible for bringing Deryn back from the brink of death. Predictably, the British tabloid media is portraying his story as a "cannabis cures cancer" story, even though, even taken at face value, it is not. I had already started a post on another topic when I saw this, and it grabbed my attention to the point where I abandoned what I was writing before to take a look at this testimonial. On the surface, it is a very convincing testimonial, which is why I decided, as Seth Myers would put it, to take a closer look.

The story of Deryn Blackwell, as told in the media

Deryn Blackwell is a 17-year-old boy whose story appeared in The Daily Mail a week ago in an article entitled (at the time) "I gave my little boy CANNABIS to help cure his cancer: Mother reveals how her teenage son who was given days to live made a miracle recovery when she gave him the drug behind his doctors' backs." (As an aside, besides its being a tabloid rag, it's always irritated me how The Daily Mail loves ridiculously long headlines.) Other papers featured basically the same story with long similarly long headlines like "'I GAVE MY BOY CANNABIS' Mum reveals she gave her cancer-stricken son CANNABIS in bid to ease his pain… and now he’s made a miracle recovery." Basically, Deryn's story was all over the UK press over the weekend. The Daily Mail story is an excerpt from a forthcoming book (of course) chronicling Deryn's battle with cancer entitled The Boy In 7 Billion, by Callie Blackwell with Karen Hockney, to be released on April 6. The description of the book reads:

The powerful and moving true story of a remarkable relationship and a tenacious fight for survival. Callie reveals her son's struggle through the physical and mental torment of battling cancer against impossible odds, and the truth behind her son's 'miraculous recovery' that she has held secret for years.

And it's true. Deryn's story is indeed remarkable, as you will see. The "secret" that Callie Blackwell has never revealed—until now!—is that it was cannabis that saved her boy when he was on the brink of death due to a failing bone marrow transplant. But was it? Let's take a look at that excerpt. It starts out with this heart-rending description of Deryn as he got sicker:

The pain was getting worse. The tips of my son Deryn’s fingers were hard and black from a superbug infection. His nails were peeling away and any remaining live flesh was covered in weeping sores.

Every day, he begged me: ‘Please tell them to cut my hand off, Mum. I can’t take this any more.’

Deryn was nauseous and, worse, had become addicted to his anti-sickness drugs. He was allowed a dose every seven to eight hours but within an hour of being given some, he would press the buzzer to call the nurses back in.

What mother wouldn't be utterly distraught watching her son suffer like this? What mother wouldn't start to consider things that she normally wouldn't, if only she could ease her son's suffering. So Callie Blackwell did this:

Deryn had suffered enough. In 2010, when he was just ten years old, he had been diagnosed with leukaemia.

Eighteen months later, he was told he had a secondary cancer, the extremely rare Langerhans cell sarcoma. Only 50 cases have ever been recorded and only five people in the world currently have it. But no one had ever been found to have the two cancers combined, making Deryn unique. One boy in seven billion people.

By 2013, after nearly four years of hospital treatment, it seemed that the only thing left for him were opiate drugs to ease the pain as he reached the end of his life.

Like any mother would be, I was desperate to find something to alleviate his suffering.

I spent hour after hour researching on the internet, and that’s where I came across reports of a substance called Bedrocan, a cannabis-based painkiller that wasn’t available in the UK. Surely Bedrocan had to be a better option than mind-numbing morphine?

But the doctor told me that while it was effective, it had not been tested on children and she couldn’t prescribe it.

So Simon and Callie Blackwell, in an effort to ease their son's suffering, sought out cannabis. Simon nobly took responsibility for obtaining some marijuana, using the rationale that if anyone were to go to jail for this he wanted it to be him and didn't want Callie to be away from their son. The two of them did what most people who've decided to use alternative treatments do and read extensively on the Internet, where they learned to make cannabis extract suitable for a vaporizer pen using a rice cooker and vegetable glycerin, noting that in 2013, when they first decided to use cannabis:

Back at the hospital, meanwhile, our son’s latest bone marrow transplant had failed. Staff were giving up on him. It seemed Deryn’s death was a done deal and now all we could do was wait until he drew his final breath. If there was no improvement in two weeks, he would be placed in palliative care.

So what happened? Callie Blackwell went through with her plan. She brought her son the vapor pen:

Deryn sucked on the pen, breathed in and blew out a massive cloud of vapour – and we frantically waved our hands around trying to disperse it, although there wasn’t the smell of cannabis. It smelt more like popcorn. After ten minutes, Deryn said that the pain had decreased a little and he felt more relaxed – the words we had been longing to hear.

Alas, his condition continued to worsen. By December 2013, Deryn had moved out of hospital and into a hospice, where he planned his own funeral. His bravery attracted national attention and some of his favourite celebrities, including Paul Hollywood, Pauline Quirk and Linda Robson came to meet him.

I note that, here, despite Ms. Blackwell having started to sneak a cannabis vapor pen to her son for an unclear number of times, her son continued to deteriorate, and the vapor pen was only providing him with modest relief from the pain. He went to hospice, as far as I can reconstruct, two weeks after his mother started to sneak him puffs of cannabis. This is hardly the sort of "cannabis saved my child" story that sounds promising, at least not to this point.

Further deterioration...and then a "miracle"

What happened next is that, as Deryn's condition continued to deteriorate during the two weeks after Callie Blackwell started to give him cannabis oil. Because he complained that he didn't want any more morphine because it made him "feel like I'm not here," she wanted to provide better relief and started wondering whether she could achieve a higher dose of cannabis by giving it to him orally. In actuality, she was almost certainly providing him a higher dose through the vapor pen, but she nonetheless decided to try. So on New Year's Eve in 2013, roughly five weeks by my reckoning after she started sneaking her son cannabis oil by vapor, she tried it:

I was sitting next to him, a nightly vigil, and held his hand. Once again, the situation seemed quite desperate. What would happen, I wondered, if I gave Deryn a small amount of golden cannabis tincture directly in his mouth? The vaporiser had brought him some relief but could a higher dose have better results?

I took a small, empty syringe from the medicine cupboard in the hospice and quickly checked that there was no one outside. It was New Year’s Eve so staff levels were minimal. I drew up 5ml of the honey-like substance, which had a sweet, floral flavour.

Still sobbing uncontrollably, Deryn opened his mouth and I popped the syringe underneath his tongue. Deryn held it for a minute before swallowing. Half an hour passed. He was no longer having a panic attack. He looked peaceful. I asked him how he was feeling.

‘I feel relaxed,’ he told me. ‘I’m aware of everything. I just feel at peace, Mum. It’s beautiful.’

It's a powerful story. No wonder it's so compelling. Indeed, it's an archetypical story, that of the parents who will go to any length to save their child from a deadly disease and succeed in doing so. Ms. Blackwell further relates that, after he swallowed the 5 ml of cannabis oil, he refused a dose of cyclizine, the antinausea drug upon which he had become dependent and that he virtually never refused. If there's one part of this anecdote that puzzled me, it was the part about the cyclizine. Basically, cyclizine is painted as this powerful, addictive antinausea medicine when in reality it's a histamine blocker and anticholinergic that is pretty well tolerated, with the usual adverse events of anticholinergic drugs, like dry mouth, and, less commonly, constipation, urinary retention, and double vision. Yet in this excerpt, the drug is painted as if it were a powerful, addictive opioid.

Be that as it may, the story certainly makes it sound as though 5 ml of cannabis oil beat cyclizine for nausea, although certainly there could be significant placebo effect here given his mother's care and her giving him something new. Convinced it was working, Ms. Blackwell continued to give her son cannabis oil whenever he "felt a twinge somewhere." Then, one evening:

One evening, I heard Deryn yell: ‘Mum – look!’ The bandage on his middle finger had worked its way loose and completely come off, showing his third finger – which had been blackened and dead – had now healed. How on earth had a child with no immune system and no way of fighting infection managed to heal himself after being off medication for more than three weeks?

I called Deryn’s team to tell them what had happened. Not one of them could give me any answers.

We knew his bone marrow wasn’t functioning and it was not scientifically possible for his wounds to heal. Deryn had spent months in isolation because a common cold could be fatal – yet, somehow, he had overcome three catastrophic infections.

Hundreds of people had been praying for Deryn, blessing him in their own ways. Was this a miracle?

Later that evening, the hospice doctor arrived. ‘We’re no longer sure Deryn is dying,’ she admitted.

The doctors were not sure whether or not the hospice was now the best place for us.

The story sure makes it seem like a miracle. One can only imagine the delight and relief, mingled with confusion and fear, that the Blackwells experienced, as their son, to whom they were preparing to say goodbye forever, made a sudden and unexpected recovery. Human nature being what it is, not surprisingly, Ms. Blackwell started looking for a cause for her son's good fortune, and, human nature being what it is (and confirmation bias being what it is in all of us), she soon found one:

When we’d arrived four weeks earlier, he’d been given three days to live. Now here he was a month later, in far better health than when he’d left his hospital room. They had no idea how this was possible.

Then it dawned on me. Only one thing had changed since Deryn started to recover: the cannabis tincture. I couldn’t tell the doctors what we’d done.

Now, three years later, she's revealing to the world what she did, and presenting it as a case of cannabis saving her son's life. But did it? There is considerable reason to doubt. Those of you who are regular readers can probably identify the issues in this testimonial that make it less than convincing as evidence that cannabis salvaged Deryn's failing bone marrow transplant. See if you can identify them before reading the next section.

The forthcoming book based on Deryn's story aside, I'm very happy to report, Deryn returned to school and appears to be doing quite well now. Until now, his story popped up every so often as a human interest story in the UK press of a boy who beat what seemed like insurmountable odds to beat two different forms of cancer after "four failed bone marrow transplants," while religious groups present him as a miracle. He even wants to study biochemistry, although he still suffers from sequelae of his disease:

"Deryn still struggles with mobility a bit and he gets very tired.

"But the main reason for going back was so he can develop emotionally and socially in that way teenagers, particularly boys, need to at that age.

"He has spent two years in a room by himself with just a nurse or me around, so it is good for him to just be normal for a while."

Even after defeating cancer Deryn has had to confront other serious threats such as aplastic anaemia.

The family has also set up a charity, Do Everything, although currently the website is listed as Under Construction.

Did cannabis save Deryn's life? It's doubtful.

Remember how Ms. Blackwell discussed visits by celebrities to see Deryn around December 2013, as things looked very grim and doctors thought that Deryn's final days were upon him? The beauty of his brief celebrity back then was that there are contemporaneous accounts of what was happening then that we can compare to Ms. Blackwell's account today. It also turns out that Deryn and his family had a fairly robust social media presence (for 2013 back then, with a Twitter feed, Facebook page (which appears to be no longer there), and website. Although the website turns up as "Under Construction," fortunately the almighty Wayback Machine lets us see what was on it as recently as 2015, which will be helpful in my discussion. Deryn's Twitter feed has no Tweets since this one:

Perusing this Twitter feed and Ms. Blackwell's recently set up author Twitter feed, I didn't see any mention of cannabis until this flurry of weekend stories. For instance, the announcement of the book didn't mention cannabis:

I found all this very curious, how Ms. Blackwell said absolutely nothing about cannabis until this weekend, even when her book release was announced and as she provided updates on her progress on her personal Twitter feed. Maybe the publisher made her keep it a secret. Be that as it may, I found it instructive to fire up the almighty Wayback Machine and look at what the Do Everything Foundation website said. Helpfully, it provided a timeline, which was not nearly as clear in the book excerpt published by The Daily Mail. I think it's worth posting the entire timeline from his last bone marrow transplant, which encompasses the time when Deryn went into hospice:

On 17th October 2013, his own cells failed because of extremely rare complications.

Thankfully Deryn had one more chance left, he had one more bag of his own cells.

The Dr's gave Deryn more chemotherapy and on the 29th of October 2013, Deryn has his own and final bag of cells transplanted into his body.

Three days after the transplant, Deryn trapped his fingers and suffered TWO catastrophic infections in his hand.

He had Cellulitis and Herpes whitlow in his hand and he also had Klebsiella in his mouth, another catastrophic infection.

40 days after a bone marrow transplant, the Dr's told us that it is highly unlikely that someone will graft if they haven't already - after 50 days there is no way someone can graft.

In their experience, no one has ever grafted after 50 days.

On December 11th 2013, at day 46, we were moved to a hospice where it was expected that Deryn would die within a few days.

We were told that Deryn's fourth and final transplant had in fact failed and there was nothing more they could do, it was believed that once they took away the life supporting drugs that Deryn would leave us very quickly.

Deryn had NO immune system and NO way to fight off even a simple cold.

After two Christmases, one New Year's Eve and quite a few worrying moments, on day 78 Deryn's bandages accidentally came off his fingers and he was - infection free!

Deryn continued to improve and he started to produce his own blood products.

On day 104 - Deryn officially engrafted!

Not one Dr can explain how Deryn fought off THREE catastrophic infections with NO immune system and then went on to engraft with what recent tests said was empty bone marrow!

On February 25th 2014, Deryn had his line removed from his chest and was officially 'Off treatment."

After coming to terms and accepting that he was going to die, Deryn was finding it harder to accept that maybe he wasn't.

It all happened so quickly.

His future is still very uncertain and he is still poorly.

BUT

We are for the first time, starting to plan for a future with Deryn.

Thank you so much for visiting Deryn's page and for reading his wonderful story.

** Miracles do happen and dreams can come true **

It's not entirely clear exactly when Ms. Blackwell started giving Deryn cannabis oil, but it was clearly some time before he went into hospice on December 11, 2013. In the excerpt above, in the context of giving Deryn his first dose of cannabis, that the doctors would give him two weeks to improve and then, if he didn't, move him to hospice, which suggests that she started dosing him in late November 2013. Then, by her own account, she didn't start giving Deryn oral cannabis until New Year's Eve 2013. Day 78 after his transplant would have made it January 15, 2014 when the bandages came off his fingers and revealed that he had healed much of his ulcers, and Day 104 would have been February 10, 2014.

One can see how this timeline might have led Ms. Blackwell to think that what had saved her son was the cannabis oil. She started giving him oral cannabis oil about two weeks before the ulcers on his hands unexpectedly healed. However, there are a number of reasons to doubt that it was the cannabis. For one thing, from this account we have no idea what strain of cannabis was used, making it difficult to estimate the cannabinoid content of the oil and therefore how much and what types of cannabinoids were in the actual oil Ms. Blackwell used. We don't know the cannabis to oil ratio. We don't even know the regularity of the dosing except that she gave it to her son "whenever he had a twinge." Given the experimental data I've discussed before that shows that the various cannabinoids only have a modest anti-cancer effect, it's hard to conclude that the doses Ms. Blackwell was giving her son were high enough to have had such a dramatic effect. For another thing, what Ms. Blackwell is claiming is not so much that "cannabis cured her son's cancer," but rather that cannabis somehow fired up his immune system so that it could fight off the infection and his cells could actually engraft after three times the length of time it normally takes. In reality, the evidence regarding cannabinoids and the immune system is mixed, with at least one study showing that they can suppress immune function. Indeed, cannabinoids are being studied more as a potential treatment for autoimmune diseases rather than as any sort of means of increasing immune cell engraftment. Basically, it's not very plausible at all based on what we know about cannabis that Ms. Blackwell's secret treatment of her son resulted in such a dramatic turnaround.

So what happened? Did cannabis really rescue Deryn Blackwell's bone marrow transplant?

What probably happened is that Deryn Blackwell was a highly unusual case in which his last stem cell infusion took a far longer amount of time to engraft than the doctors at the hospital treating him had observed before. It just so happened that, as Deryn was deteriorating, his mother, anguished at watching him suffer and desperate to do anything possible to alleviate his suffering, decided to give vaporized cannabis oil a try to help his symptoms. Unfortunately, her son continued to deteriorate and entered hospice. She decided to give him the cannabis oil by mouth three weeks after he entered hospice, and it seemed to relieve his symptoms somewhat more effectively. Two weeks later, the "miracle" occurred, and the bandages fell off. Deryn's rare and unexpected recovery, happily, manifested itself. The rest, as they say, is history.

Deryn's recovery was unexpected, but unexpected and rare recoveries do occur in medicine. Given what we know about cannabis oil, its rather modest effect on cancer, and the tendencies of cannabinoids to be, if anything, immunosuppressive, it strains credulity on a strictly scientific basis to attribute Deryn's turnaround on homemade cannabis oil. That's not to say it's impossible that cannabis oil was responsible for Deryn's recovery, only that it's incredibly improbable. Remember, we know a fair amount about cannabinoid activity against cancer and its activity in the immune system, and what we know doesn't support the plausibility of Ms. Blackwell's testimonial. However, as is the case with a lot of other alternative cancer cure testimonials, the all-too-human tendency to want to attribute cause, combined with the form of selective memory known as confirmation bias, which leads all of us to tend to remember what confirms our beliefs and to forget what does not, has led to a conclusion that is almost certainly not correct. Remember again, Ms. Blackwell seems not to remember the several weeks she was giving her son cannabis oil via vapor stick and he was continuing to deteriorate to the point of entering hospice. I repeat that again because it is important. This testimonial is almost certainly a case of confusing correlation with causation.

But what about this claim:

Yet there was a direct correlation between Deryn having the cannabis tincture and his improved blood counts. Whenever he didn’t have it, they dropped. It was enough hard evidence to suggest that cannabis tincture was playing a vital role in his recovery. I hadn’t imagined in my wildest dreams that it could have saved Deryn’s life.

Without very detailed record keeping in which Deryn's counts were listed by date and then correlated contemporaneously with whether or not he was taking cannabis oil and at what dose, it's impossible to support or refute this claim. It's probably more confirmation bias.

Be happy for Deryn Blackwell, but be skeptical

Although I highly doubt that cannabis oil had anything to do with Deryn Blackwell's "miraculous" recovery, I am very happy that he did recover. Nothing pains me more than seeing children die of diseases like cancer. I can also understand why Callie Blackwell and her husband Simon have come to believe that cannabis cured their son. They are human. They have all the cognitive quirks that lead humans to incorrect conclusions that we all have, and those tendencies are only magnified when it is someone they love deeply that is the object of their hopes and prayers. Confirmation bias is a very powerful thing indeed under these circumstances. Unfortunately, the timeline that I have been able to reconstruct is thin gruel indeed to support Ms. Blackwell's belief that cannabis oil saved her son by somehow helping his immune cells engraft in his bone marrow.

Unfortunately, what I fear is that a combination of love for Deryn, confusing correlation with causation, and confirmation bias have led the Blackwells to become true believers on the order of Rick Simpson, but with an even more dramatic story in which cannabis is portrayed as having literally pulled their son back from the brink of death. Consider this. Deryn's story is quite inspirational without the cannabis angle. Yet what excerpt did the publisher decide to release first as part of the book's publicity campaign? Yes, it released the part describing how Callie Blackwell surreptitiously dosed her son with cannabis oil, and the Daily Mail and the rest of the UK tabloid media responded predictably with stories portraying Deryn Blackwell as proof that cannabis can cure cancer, even when his story shows nothing of the sort. If you want to get an idea what I mean, check out this interview last week in The Mirror in which Deryn's story is used as a starting point to tout medical marijuana as a treatment for multiple sclerosis, glaucoma, epilepsy, arthritis, Alzheimer's disease, anxiety disorders, stroke, inflammatory bowel disease, and cancer. In fairness, Ms. Blackwell didn't say any of these things, but The Mirror spun her son's story this way. This is intentional.

In case you don't believe that it was intentional from the beginning to spin Deryn's story as a "cannabis cures cancer" testimonial and sell it to the media that way, consider Ms. Blackwell's co-author, Karen Hockney. It turns out that she's heavily into the woo herself. After undergoing conventional surgery, chemotherapy, and radiotherapy for breast cancer, she became an advocate of the "alkaline diet" to treat her cancer. Why would Ms. Blackwell's publisher choose such a co-author for a neophyte author if the plan wasn't to emphasize the cannabis all along?

Unfortunately, the narrative that is being spun has the potential to influence patients with cancer and parents to try unproven and quack treatments, like cannabis for cancer and who knows what else. In seeking to do good, I fear that the Blackwells could actually make it less likely that future Deryns actually survive their cancers. It saddens me to say it, but it has to be said.

Categories

More like this

This story is making the e-mail rounds and I cannot resist posting it here. I started rolling on the floor laughing about a quarter into the story. See how far you can go and still keep a straight face (under the fold).... If you have raised kids (or been one), and gone through the pet syndrome,…
While perusing press releases for this week's online Early Edition of the Proceedings of the National Academy of Sciences, I came across one with some unintentionally humorous phrasing. The press release details how University of Washington/Albert Einstein College of Medicine researchers using a…
When CBS-TV decided to run an anti-abortion ad during the Superbowl there was a lot of talk about the propriety of airing highly polarizing advocacy advertising in such a highly visible media slot. There has been less talk about the content of the ad beyond the obvious fact it was making an implied…
Hodgkin lymphoma is one of the more curable forms of cancer — the 5 year survival rates for patients who are middle-aged or younger is over 90%, and for kids, it is over 95%. These results assume, of course, that the cancer patient is actually treated with modern medicine — neglect that, and all…

I've noticed that it is common for alt-med types to argue from anecdote: "Treatment Z cured my condition X!" But the people making these testimonials usually don't have any medical training, so they may well be unaware of alternate explanations, or they are making a post hoc ergo propter hoc argument. Ms. Blackwell is no exception to that rule. And of course, the plural of "anecdote" is not "data".

I am old enough to remember the Reagan administration, and in particular Reagan's habit of using apocryphal anecdotes as arguments. Typically there would be a small grain of truth to the anecdote, e.g., the "Chicago welfare queen" who would pick up her welfare check in a Cadillac was based on an actual case, but Reagan never pointed out that the woman in question got caught and went to jail for her fraud. I have no evidence that the Blackwell case is in any way similarly apocryphal, but I remain skeptical. Extraordinary claims like this one require extraordinary proof.

By Eric Lund (not verified) on 03 Apr 2017 #permalink

Not here to debate this specific cannabis claim but just to call you out on the statement "Rick Simpson has profited from after claiming to have cured his skin cancer with cannabis oil in 2003". Unless you are using "profit" non-literally, Simpson gave away his oil for FREE until police raids forced him to buy his own cannabis. He also documented exactly how it was made so that anyone could do the same (in truth, he did not invent the process even though it is called Simpson Oil). So stop trying to equate him with charlatans that make dubious claims in the interest of enriching themselves.

Oh, and here is a great article (one of hundreds of peer reviewed studies) for you to read: http://www.ukcia.org/research/AntineoplasticActivityOfCannabinoids/inde…

Synergism = Science-based medicine and integrative medicine.

Did the parental oil-treatment enhance immune system function in Deryn?

http://www.nature.com/icb/journal/v78/n1/full/icb20006a.html

Thankfully for Deryn, a synergism (not miracle) may have occurred although by happenstance in this case.

In the future, will science-based medicine tolerate integrative medicine in the spirit of surprising and unexpected results?

By Michael J. Dochniak (not verified) on 03 Apr 2017 #permalink

#3 – Seriously – a reference from 1975? For a treatment with a good evidence base there would surely be something a little more recent than 42 years ago.

Fuck off, Travis.

Though it is unlikely that cannabis oil cured this boy's cancer, is it possible that it did in fact make him more comfortable and relaxed, thereby allowing his body to more easily do what it needed to do in conjunction with the conventional treatment he received?

is it possible that [cannabis oil] did in fact make him more comfortable and relaxed

Possible, yes. I have heard stories of people who use cannabis for pain relief. The trouble is that it's anecdotes, not data.

I'll stipulate that this is not entirely the fault of the pro-cannabis faction. For decades US politics has made it anywhere from difficult to impossible to actually do any kind of medical cannabis trial. Having Jeff Sessions as Attorney General does not help. But we have reached the point where we need the studies in order to have an informed debate on the subject. We have the testimonials, and unlike with many forms of woo, we have a causal mechanism which is at least superficially plausible to a layman. But that isn't enough to get marijuana accepted as a medical treatment. We need to make sure that the movement is not an overreaction to the (IMHO) decades of unduly harsh legislation against cannabis. Otherwise we would be trading one form of Reefer Madness for another.

By Eric Lund (not verified) on 03 Apr 2017 #permalink

Add to that a dash of confirmation bias, something we human beings all suffer from, and it’s very easy to come to develop an unshakable belief in a post hoc ergo propter hoc fallacy in which something they observed or did before something else happened must have caused that something else to happen, be it vaccines “causing” autism or cannabis “curing” cancer.

I would argue that the euphorogenicity of the drug exacerbates confirmation bias and likely also placebo effects. The problem with messing up the cognitive functioning of your brain is that you mess up the cognitive functioning of your brain.

I would argue that the euphorogenicity of the drug exacerbates confirmation bias and likely also placebo effects.

This would be more plausible if that confirmation bias were coming from the actual patient.

This would be more plausible if that confirmation bias were coming from the actual patient.

The point I have been trying to make is that in most cases (though I will stipulate, not in this particular case) the confirmation bias is coming from the actual patient. We hear about the cases where marijuana is alleged to have helped the patient's pain. We don't hear about the cases where it didn't, and we especially don't hear about the cases in which the patient died. (That's true of many other forms of woo; Stanislaw Burzynski comes to mind.)

And of course it's plausible that a euphorogenic drug would have a higher placebo effect. Users take such drugs because such drugs make the users feel good--whether it's merely a recreational high, or whether there is some (alleged or actual) medical purpose for it.

By Eric Lund (not verified) on 03 Apr 2017 #permalink

#5 Really not sure what the "Fuck Off Travis" is all about.

Just in case you missed the point of the link, it was indeed more than 40 years ago when there was scientific evidence of the anti-cancer properties of cannabinoids.

Here's something that is from 2016. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4791144/

There are many more peer reviewed studies as well.

(Also there was no suggestion of a treatment modality in my post. Just pointing out that there IS solid evidence of antineoplastic activity with cannabinoids).

I'm with everyone else on doubting cannabis cured him. Though we could be missing another property of cannabis.

It does enhance the appetite and if he was suffering from dry mouth from the anti nauseants... maybe it helped him eat?*

*Am not a doctor obviously.

https://www.theguardian.com/uk-news/2017/apr/03/baby-at-centre-of-life-…

On a similar note, who else smells a rat with the US doctor involved here, whose name apparently can't be revealed for 'legal' reasons. It breaks my heart that the parents have been led to believe that an experimental alleged treatment - never tried before on humans or on animals - might somehow be the cure they long for. The mother says that it is 'taken orally' so won't cause discomfort in the baby.
Now that the case is back before the courts it even seems that the US doctor is trying to back away, not having realised the seriousness of the situation he or she has got involved in - or its enormous public profile.

By NZ Skeptic (not verified) on 03 Apr 2017 #permalink

@zach His site has a donate button and he sells a number of books. Back in 2016 Simpson founded a small, independent publishing company too (Simpson RamaDur LLC).

Marc Emery has called him out in the past: ''I find Simpson a bit of an odd fellow. When he was raising money to travel across North America to promote his "oil", they claimed to need $300,000 to do the tour, and they raised only $3,000, so it was called off. I couldn't believe this $300,000 figure they claimed to be trying to raise. Jodie & I traveled to 30 Canadian cities across Canada for about $17,000 over 2 months from St. John's to Victoria, and I told them this amount of money they claimed to need was outlandish for a tour, and absurd to try to get this amount raised for what would be a simple speech at the public library in selected cities." https://www.icmag.com/ic/showpost.php?s=e3af33e618c8ff90834668370b4880d…

By James Peters (not verified) on 03 Apr 2017 #permalink

For those who have not read the previous post on the same topic at Science-Based Medicine, I would suggest doing so before commenting here. The comments from the mother of the patient are revealing.

By Lighthorse (not verified) on 03 Apr 2017 #permalink

"I found all this very curious, how Ms. Blackwell said absolutely nothing about cannabis until this weekend"

The most charitable explanation would be that she was afraid of legal ramifications, but figures now is a relatively safe time to do so what with Deryn's condition improving and the possible fat advance on book royalties to fund a defense if necessary.

Marijuana as a treatment for anxiety disorders? I had to stop taking dope - in any form - many years ago because it was consistently triggering my panic attacks. They were eventually cured by a combination of CBT and that horrible, evil, Valium.

By Mrs Grimble (not verified) on 03 Apr 2017 #permalink

The comments from the mother of the patient are revealing.

Brava to Ms Blackwell for her contribution to the discussion in that thread.

By herr doktor bimler (not verified) on 04 Apr 2017 #permalink

Completely independently of direct anti-cancer properties of cannabis, relieving the side effects of chemotherapy seems to be one of the better evidenced applications.

And as for #17: THC != CBD and those are only two out of a big zoo of (potentially) active components present in different ratios depending on strain and growth conditions. Besides, not every treatment option for a condition is suitable for every patient.

By aairfccha (not verified) on 04 Apr 2017 #permalink

@ Jay #12: Actually, appetite enhancers, and good oral care, are key components of good medical and nursing care in this client group. Doctors use a drug called Megace that serves the same purpose. It works better for some patients than others, and some patients do use medical marijuana for appetite enhancement.

Good oral care also makes patients feel better and want to eat; no one wants to eat when they have a bad taste in their mouths.

@ NZ Skeptic @#13: I don't read it the way you do. The article is poorly written; similar articles are rehashes of each other. I think the British news is all reinforcing the same bad reporting. Your article indicates the NHS docs can't be identified; that makes sense--protects them from crackpots. There is no reason not to identify the US neurologist.

Jay@12: What I got from the article (though I could be wrong) was that the US treatment, whatever it is, won't do anything to prolong the child's life. He is now completely unresponsive to any stimuli, has no muscle movement, not making any sounds and probably not hearing anything. If the treatment works, all it will do is give him a litle muscle movement and make him esponsive to stimuli. In which case, he'll almost certainly feel more pain and discomfort for the remainder of his short life (assuming he has any degree of consciousness of course).
His parents are doing it because they "want to see him smile". Dear Jeebus...
As a parent myself, I can understand their desperation. But it sounds like nobody has fully explained things to them.

By Mrs Grimble (not verified) on 04 Apr 2017 #permalink

@James Peters: thanks for the link. It's from 2009 with a dead link that refers to Grinspoon on Simpson. I haven't really kept up to date with Simpson's shenanigans and certainly don't abide anyone peddling cannabis as a cure for cancer. But that's a side issue and I'm not really interested in Rick Simpson, all he did was popularize a particular method for extracting & concentrating cannabinoids.

Instead I googled Grinspoon THC Cancer and found this interview 2015: http://www.mintpressnews.com/MyMPN/marijuana-reconsidered-an-interview-…

" I am glad that you bring that one up. I hear a lot of people talking as if cannabis can cure cancer, and that worries me. People who are not sophisticated about this will not go to a doctor and they will miss chemo treatment, radiation or surgery and just rely on cannabis. By acting like this they lose a lot of time because with cancer you want to go as fast as you can to the doctor. So I think you can not say that cannabis cures cancer.

However there are some properties of cannabis which in my view make it very important that those patients use marijuana alongside the modern western oncological treatment. In case of chemotherapy for instance they can use cannabis to combat the side effects of the treatment like distressful nausea. Cannabis can help as well to diminish the size of tumors which can be important when the tumor causes an obstruction, it stimulates appetite and in vitro it stops cancer cells from spreading, kills cancer cells and leaves healthy cells untouched and interferes with the blood flow in the tumor.

So there are a number of effects which shows that marijuana pushes back cancer. This makes it important to use marijuana but along with the modern medicine. Nobody has proven to me so far that cannabis cures cancer but for sure it is a very good adjunct."

Grinspoon would be #1 on the list to say "we should be studying the hell out of cannabis".

@James Peters: thanks for the link. It's from 2009 with a dead link that refers to Grinspoon on Simpson. I haven't really kept up to date with Simpson's shenanigans and certainly don't abide anyone peddling a cannabis as cure for cancer. But that's a side issue. I'm not really interested in Simpson, all he did was popularize a particular method for extracting / concentrating cannabinoids.

Instead I googled Grinspoon THC Cancer and found this interview 2015: http://www.mintpressnews.com/MyMPN/marijuana-reconsidered-an-interview-…

" I am glad that you bring that one up. I hear a lot of people talking as if cannabis can cure cancer, and that worries me. People who are not sophisticated about this will not go to a doctor and they will miss chemo treatment, radiation or surgery and just rely on cannabis. By acting like this they lose a lot of time because with cancer you want to go as fast as you can to the doctor. So I think you can not say that cannabis cures cancer.

However there are some properties of cannabis which in my view make it very important that those patients use marijuana alongside the modern western oncological treatment. In case of chemotherapy for instance they can use cannabis to combat the side effects of the treatment like distressful nausea. Cannabis can help as well to diminish the size of tumors which can be important when the tumor causes an obstruction, it stimulates appetite and in vitro it stops cancer cells from spreading, kills cancer cells and leaves healthy cells untouched and interferes with the blood flow in the tumor.

So there are a number of effects which shows that marijuana pushes back cancer. This makes it important to use marijuana but along with the modern medicine. Nobody has proven to me so far that cannabis cures cancer but for sure it is a very good adjunct."

Grinspoon would be #1 on the list to say "we should be studying the hell out of cannabis".

@Mrs Grimble: I wouldn't have thought so either, but have a family member who suffers from anxiety and uses cannabis to combat nausea and to stimulate appetite but also experiences a positive effect on the anxiety.

Everybody's different.

Personally, I can think of quite a few highly speculative ways how cannabinoids might have helped with engrafting, but all of those make them also somewhat unsuited for normal cancer treatment. Heighten the lifespan of free cells, maybe inhibiting apoptosis and facilitate adhesion and remodeling of surrounding tissue. Well, AFAIK I basically just described metastasis.

On another note, we already know there are cannabinoids (in the chemical sense, not in the "binding to CB1 and CB2" one) with wildly differing profiles, and if we go for synthetic compounds acting on the endocannabinoid system and somewhat related "orphan" GPCRs it gets even more confusing. My personal stance would be to strive for somewhat selective agents or at least try to remove likely harmful ones (e.g. THC in quite a few psychiatric indications), but we get little of that from those testimonials.

On another note, IIRC from a talk about CB-knockouts some years ago, there are some biphasic effects in the endocannabinoid system, e.g. low levels of cannabinoids sometimes have opposite effects to larger ones, similar to some dopamine receptor ligands, e.g. apomorphine is sedative in small dosages and induces hyperactivity in bigger ones. IMHO also quite important, though I see little discussion about it.

By Trottelreiner (not verified) on 04 Apr 2017 #permalink

The woman is a fraudster FACT. She allowed the her children to smoke at 12 and 14. She is a disgrace!

By Jason Eacups (not verified) on 05 Apr 2017 #permalink

Jason Eacups is the scammer exposed on the film Project Storm, he is responsible for Callie and her family having to flee the UK after he threatened to report her to the UK police for administering cannabis oil to her son

https://youtu.be/wyMAsWr4KOw

By Jeff Ditchfield (not verified) on 23 May 2017 #permalink

It seems the author will not accept anecdotal evidence of a drug's effectiveness but he will quite happily launch a thinly veiled attack on a parent of a child that was seriously ill using....what? Anecdotal evidence.

Cannabis will not be tested as long as large pharma companies wield such massive influence over funding of drug trials and national governments.

Recent trials for the treatment of dementia with cannabis had to moved from the US to Germany for this very reason. I find this article extremely bias towards established medicine and you don't have to spend to look on google to see where some of those tried and tested drugs led humanity.

By dave kavanagh (not verified) on 24 Jun 2017 #permalink

Dave Kavanagh claims that "Cannabis will not be tested as long as large pharma companies wield such massive influence over funding of drug trials and national governments. "

Dave is peddling the common altie trope that nasty old Big Pharma is blocking Natural Cures because they can't be patented, or because they're just plain Evil. Dave, meet reality.

'...there are now 90 cannabinoid drugs in development worldwide, according to a November whitepaper from market analysis firm GBI Research. The firm explained that 74, or 82%, of those drugs haven't made it to in-human testing yet, with 60 in pre-clinical investigations and 14 under discovery. Phase 1 and Phase 2 each claim six drugs in the global pipeline, while just two candidates – GW Pharmaceuticals' Sativex (nabiximols) and Epidiolex (cannabidiol) – are in Phase 3."

http://www.biopharmadive.com/news/cannabinoid-market-pharma-fda-investo…

*the same people who tell us Big Pharma is blocking Natural Cures, assure us in the same breath that Big Pharma is attempting to monopolize those alleged cures, or triumphantly announce that X high percentage of modern drugs are derived from herbs/plants. You have to wonder if there's a cannabinoid drug to treat such defects in critical thinking capacity, or to at least make them less annoying. :)

By Dangerous Bacon (not verified) on 24 Jun 2017 #permalink