Putting Glioblastoma Brain Cancer into Remission with Diet! | GBM

welcome to the plant-free MD podcast with Dr Anthony chaffy where we discuss diet and nutrition and how this affects health and chronic disease and show you how you can use this to optimize your health and happiness both mentally and physically hey guys just want to take a second to thank our sponsor at carnivore bar I don't promote many products because honestly all you need to be healthy is to just eat meat for those times that you're out hiking road tripping or stuck at work and you want nutritious snack that is just meat fat and and salt if you want it the carnivore bar is a great option so I like this product not because it's just pure meat but also because I want the carnivore Market to thrive as well and the more we support meat only products the more meat only products there will be available in the mainstream so if this sounds like something you'd like to get behind check it out using my discount code Anthony to get 10% off which also applies to subscriptions giving you 25% hello everyone this is Dr Anthony chaffy with another episode of the plant-free MD and today I have two very special guests and I think will be a very interesting conversation we have Andrew Scarboro and his colleague Isabella Cooper who are doing research on brain tumors and Andrew himself has a very interesting story uh involved with that as well thank you very much Andrew and Isabella for joining thank you for having us thank you you're welcome so Andrew uh would you be able to just start us off by just just telling us a bit about yourself and your story and how you came about to be doing the the research that you're doing now yeah so I was diagnosed with with an anaplastic asroy brain tumor if you go by the latest classification it could have been G blastoma considering the classification criteria changed and my tumor was idh1 wild type which won't mean much to many people but that means um yeah carries a poor prognosis and is treatment resistant he was also unmethylated for a DNA repair protein called MGMT and that confers again treatment resistance and poor survival so this uh wasn't ideal an ideal situation and so due to the fact that I had previously studied a musters in nutritional therapy before my diagnosis I decided to apply metabolic Therapies initially to manage the epilepsy and then I found it had a great benefit on the or great potential benefit you can I have to be speculative rather than make any claims but um yeah it appeared to have a real benefit on my scan results as the um the signaling the signaling activity that displayed uh potential disease or or whatever that would be was uh gradually dissipating and then went to nothing uh over time upon applying these metabolic therapies so that's my story in the nutshell yeah and and what what were these metabolic therapies did you undergo yeah so initially I adopted a 4 to1 ketogenic diet uh to manage my at the time drug resistant uh Grandma seizures that was having as a result of uh both the brain hemorrhage that I sustained that led to my diagnosis and the brain tumor itself and so initially it was that and then I um found it wasn't completely controlling my epilepsy and so I excluded various things from my diet it I I um eventually discovered This was um tered like a zeroc cab or carnivorous diet because I found most of the things I reacted to were plant um related and so yeah I was on a carnivore diet without knowing what a carnivore diet was and um it was still uh 4:1 3:1 kind of ratios and uh yeah I had instant uh results with my epilepsy whereby it was completely controlled and then it took two years to come completely off the medication that was very difficult because I had to do it all on my own uh there was lots of resistance from various neurologists who were telling me it was irresponsible and they were correct because you can have break through seizures you can't you can have withdraw seizures where it can kill you especially if you're still having uncontrolled seizes and I was on the maximum amount of medication on two different anti-epileptic drugs so doing that on my own was quite a task I added um very a very bioavailable form of magnesium well a few different forms but um that helped and I added um boswellic acids quite a high dose because I still had some brain swelling um what else hyperic oxygen therapy I did that uh had Ketone nesters um yeah and then over time things got gradually better scy tissue even improved which I was told wasn't possible really and uh I went back to studying because I wanted to um investigate more what I was was if what I was doing was really helping me as much as it seemed my oncologist was very excited about this uh I moved to chering Cross hospital for my treatment because they were interested in metabolic therapies and um I became more interested in being listened to so that's what another reason for the studying because if I was just another anecdote another person no one would listen to me and found more people listen to me from uh studying this and after being in New Scientist magazine so that was a big thing as well they picked up my story and that suddenly gave me you know relevance and in in the scientific Community whereas if that wasn't the case I think it would just be you know another anecdote and we should be studying those outliers right that's what we should be studying well I mean and and that's what case studies are about you know I mean we write these things up all the time in neurosurgery like you know hey look do something different happened than we normally see let's take a look at it and so that's very very important and that and that's that's the first step in a new direction to say Hey you know maybe we're maybe there's something else going on here why don't we take a look so I'm glad that that I'm very glad that you did that I'm very glad that that these treatments worked for you um did you get get traditional treatments as well as metabolic therapy or just just stuck yeah initially yes um until the point where I discovered the uh genetic profile of my tumor was not um was displaying that it wouldn't be chemosensitive right so I abandoned the treatment then but the crazy thing is that the protocol that I was initially on was going to be continuous indefinitely so you have cycles of chemotherapy just until you die really yeah they have this idea whereby if you're unmethylated for MGMT and your idh1 W type if it it's said to be chemo resistant and so the strange idea that they have that where they try and rationalize it is to say we'll just keep doing the treatment and see if eventually it becomes chemosensitive it's a very strange way of thinking about it yeah I wonder so I was just I wonder how many of those have actually happened like that you know uh probably not too many no no yeah sorry you gonna say something I was saying the only real thing that they actually measure with regards the blood markers is they're looking at the toxicity of the treatment that's what they they're just seeing if you tolerate the treatment but they're not really assessing the overall health of the patient at that point they sort of become disinterested in whole body physic phology and health yeah one thing I should note is that when I was on anti-epileptic drugs initially I was just on one drug and I purposely put myself on another drug because it showed that it had a synergistic benefit with a ketogenic diet so that was um sodium Val or the brand name is epilim and so I purposely put myself on that one even though the side effects are horrible because it's one of these purpose drugs that can have efficacy for cancer management particularly with brain cancers so okay purpose stuff for yeah and then did did you get undergo uh surgical debulking as well or just like bio yeah I had most of the Shima removed however there was residual disease in the motor cortex area of my brain and if they tried to get to that I could have been left paralyzed so or dead so yeah yeah and and then and did you go under undergo radiation as well or was it just started with the chemo and then and then pulled pulled up Stakes at that point I had some radiation but abandoned it uh towards the end because just it again the hisy pathology was dictating that you know possibly wouldn't be beneficial and also I was it was causing me to have quite horrific seizes so okay yeah you know not what you want to continue with it's not worth it and then and then after that uh how how long ago was that first of all and then since then uh how how have you been and and what's it looking like on MRI now well I'm coming up to 10 years now and uh I have memor just when I feel like yeah and I have it without contrast because I've done my own research into how bad that can be um it can actually I have to say potentially again potentially it could um contribute to worsening of disease and not only that but people who have symptoms of gadolinium retention because that's that's the main contrast used um people yeah people who have what was I going to say people have symptoms of galini retention um it it's retained in regions of the brain that can cause um feelings that are similar to the brain tumor even just wherever it is it's uh the dentate nucleus and the Globus paladis I think it is um and that's you have it causes um symtoms that affect fine motor control and um can just leave you with like a brain fog and fatigue which you might you know think it's what I'm monitoring it for rather than the retention which isn't routinely tested for so yeah yeah yeah and then and then on your most recent M did did it show that it was stable or or or what it's been well interestingly over the course of time particularly after I had my after I had Hyperbaric o therapy there was uh no disease shown so the signaling activity that was there post surgery um over time gradually uh went away yeah yeah and I suppose obviously avoiding galenium it's not going to show little spots but obviously you can definitely tell if there's there's a big Mass growing there even the thing is with with the gadolinium it's uh an agent that they use which is grossly overvalued it's not necessary even my oncologist has verified to this when I've um spoken to him about and questioned what you know what's the necessity of doing this when you're initially diagnosed with the high-grade G you're having scans every three to four months and the effect of this risk of retention is cumulative so the more scans you have the more you're playing Russian roulette with you your with your own brain you know it's not ideal yeah we and we do and we do use them a lot yeah and uh and that is something we we normally do take into consideration with like meningiomas and things like that long term when we start spacing them out but yeah you're right with something like a GBM we just sort of get what we need because people are considering this to be a terminal disease and so they don't really necessarily think about the long-term consequences of gatal linium buildup uh in the patients necessarily I mean it's not it's not the first thing you think about uh in these cases unfortunately but um well that's amazing and I I I I'm really really happy to hear that you're doing so well and to you know hear your story and um has that has it really just been the the keto and carnivore diet I think I you know talking to um you know Phil and and I think I saw a an interiew with him and then they were talking to like lazor llo um borash professor of pediatric medicine yeah they were talking about jerum yeah is that something that you uh used as well it's something I investigated and I did drink duum depleted water for a while but uh the studies that I saw in the case studies I reviewed didn't appear very [Music] um it wasn't it it didn't give me enough to to say that that was having a big effect and I think it would be very difficult to deplete tarium from the body um in that way but I do think it's I do think it's a factor I just I just the problem is all when you purchase youan depleted water isn't it in plastic bottles yes yeah yeah I am very mindful of the uh the water that I drink and it's dly glass bottles exactly I just um I just interviewed um Dr Gabor somai just just on on uum depleted water and um oh yeah yeah nice I I don't know if this is going to be coming out before after that I'll probably time it to have his come out before that so people know uh what we're talking about with that but you know if if for whatever reason people haven't seen that what we're talking about is is dyum which is an isomer of hydrogen and so it's just heavy heavy hydrogen and so dyum water is like heavy heavy water and um and it's hydrogen but it acts differently because it's it's weighted differently and so that affects the molecule and uh and the functions of that molecule differently and there's been uh some research by Dr somai and others like Dr boros who have have shown that this is very integral in in cellular uh proliferation and once dyum gets to a certain level cells start to split off and this affects our mitochondrial Health as well if gets below a certain level then they they kick off a lot of free radicals and um and die and so this is something that's been uh you know theorized by them and written a whole book on it uh by Dr somai saying that hey you know this this is this is part of the equation this is definitely something and probably a major something involved in in cancer um and and of course this is how MRI scans work right so the areas that up that's high Dum areas yeah so helping that because it's accumulating in those regions yeah yeah so exactly so so that that's sort of the idea is that some you know that um they're sort of saying that that you know depleting the dyum getting your dyum levels lower that's going to you know stop things from being able to to proliferate and and um and that it's going to slow down and actually even can kill these cancer cells and so uh people should watch that uh episode and and check out that more to understand that we won't we won't go to too deep into that um well well that's fantastic I I I'm really really happy to hear that um so now you guys are doing research in this like you're saying you know you wanted to you wanted to be taken seriously you wanted people actually start doing real Research into this because obviously you are an outlier and you know as you say we really should be studying outliers we really should be looking into this and so can you tell us a bit about your work and what you're doing I'll leave that leave that to Isabella because she hasn't spoken as much no no no it's good it's good it's always good to hear hear a recap on your story um so essentially Andrew and I met when we were both students studying and uh we progressed on become you know fully-fledged researchers I'm completing my PhD my background is in Biochemistry and pathophysiology and um I have a very big interest well my research area is in hyperemia and the converse which is um ketosis so basically uh you know with regards to being in ketosis I you know we all hear a lot in in um sort of the medical world and with cancer patients and in general is that ketosis isn't for healthy people and um it's something that is either not sustainable or shouldn't be sustained so should only be used um therapeutically for a short duration of time and so you always hear these sort of challenges or you just hear it's only for epilepsy and that's it and so what I really sort of thought about as as a researcher was well I actually know lots of people who who do live their life in ketosis and these are people who don't have any disease at all and they seem to be doing perfectly fine but maybe they're not I don't know um we have to investigate it you know all these claims are made and I thought okay so well well rather than just going along and saying with these claims where's the data on that where where is the research on that that actually shows now of course different interpretations of longterm longterm as in lifespan longterm as in decades or you know what really is long term six months a year two years three years you know there's that that aspect too and so often we can't do whole of life human studies not one not one research team obviously um we could do in animal studies and they had the done in animal studies animals who have been in um uh sort of what we would call a healthy ketogenic um dietary lifestyle and I say healthy because that that there you know we have seen bad versions of kenic diets given to animals where they're essentially given hydrogenated seed oils um it's amazing how well they actually do just surprisingly but not not you know not ideal and we know that just doesn't exist in nature it just doesn't exist in nature so there's yeah I don't know animal that evolved on hydrogenated seed oils or seed oils and so uh you know with regards to human studies because at the end of the day again the flaw is with animal studies is how translatable is it to humans and you know as we do now commonly we use surut markers that are usually predictive or or track with associate with not necessarily causal um with morbidity right with with uh diseases so people s of of know if you're fasting glucose is every year going up a bit that's pretty much a bad sign and so we can use these biological markers to give us an indication and usually it's not one marker it's a sum of markers it'll be you know whether it's three four up to 10 or more and it's like a DOT to dot so the more the more dots you get the better the picture the resolution of that picture and so I thought well with regards to being able to do to do to to research a healthy cohort of people who sustained ketosis as their regular lifestyle and you know let's say sustain ketosis for at least 80% of their time um through any method that suits them not through a controlled method because again there's so much variability so much variability in terms of uh dietary preferences uh religious cultural practices um you know ethnic Cuisines uh just preference you know some people like to eat three meals a day two meals a day one meal a day you know there's so much variability and so uh the idea was to understand and measure people's capillary ketones not urine ketones before dinner time not breakfast time because in actual fact people who are not on any real sort of ketogenic diet eating three meals a day who are actually really healthy are likely to wake up with some measurable amount of ketones so it's about whether that that day daylight hours are sustaining that ketosis um you had all females as well which is unique yes ini yes exactly we're in all female group and and then there will be that argument from that well how is that translatable to the public and and I would agree you know that that's always going to be the challenge if it's all male how does it translate if it's all female how does it translate You could argue though with an all female group that it's more messy you know because there is the monthly cycle that comes into it so the fact that it's more messy if you've got sort of quite homogeneous data that's that's a very strong signal in itself and that is what we have um we we we so far we haven't completed the trial so obviously we have to wait and and really see for sure but so far I can say our data is very homogeneous it's very normally distributed um we also funny enough again it was actually no intention um it's racially diverse and uh you know it's it's a funny one because again usually in Trials we try to control for everything so to to to make the group really homogeneous so all the same sex and all the same same uh racial uh cohort things like that and there's value to that absolutely there value to it um it helps you sort of really defined for these subsets and um but at the same time we we just happen to be really this group that that we have racially diverse which again should confer more heterogeneity in those results and the fact that we've got homogenity in our results again strengthens our data in actual fact um yeah really it just it's constantly um like we're always like wow wow wow you know all the time so um but still we haven't finished it so we have to wait and see that data says and the idea of this this um study which is my my first part of my PhD that's been you know fully completed um it's divided into three and the idea was that I wanted it to serve as a baseline group the control group for other groups who have metabolic diseases because I noticed that a lot of there are studies there are ketogenic studies um that are going on in Alzheimer's disease type 2 diabetes cardiovascular disease even cancer um but they compare these this cohort to the non-intervention group um who you know let's say we have brain cancer so you have the group that's put in the key to a diet and the group that's not um and I I would argue there that the group that's not the the control group whether it's a control group from who don't have brain cancer or a control group who do have brain cancer I would argue they're not the right control group to actually measure against I think that they should be compared against a healthy group of people who live their life in ketosis and then we can see well this is where we think that those markers actually should fall in this um signature um and and then we can really see we can sort of place where cancer patients are in in the metabolic phenotype spectrum and understand uh you know are they closer shifted towards a spectrum that everyone sort of understands as a diabetic or hyper incinia um because hyperemia can exist without elevated blood glucose Di diabetes you get elevated blood glucose and elevated insulin together um but hyperemia is basically proceeding over diabetes and uh with with cancer where does it fall on that Spectrum now actually you do I mean we know that type two diabetics obese people um do suffer much higher rates of cancer but um so and and with type two diabetics you'd see this elevated blood glucose but you might not necessarily see that with cancer patients and the reason being is that you know um cancer cells do guzzle up glucose um and so that's actually going to help you maintain quite good glucose numbers and so that would be reflected as well in a hba1c looking normal um and and that in itself would actually have a consequent on lowering insulin in actual fact A reduced need for insulin but the problem is is that what's been going on 10 15 years earlier has likely driven to the point that the insulin signal the elevated insulin signaling earlier on has increased insulin receptors increased all consequent you know so increased igf-1 receptor in increased igf-1 synthesis decrease igf-1 binding proteins all of this stuff has gone on beforehand so you once you've reached the stage that you've got you know a tumor detectable tumor your insulin levels might have actually come down by that point and you need to be looking at other proxy markers that are going to telling you you know they're not necessarily causal they might be causal but they are definitely affected by chronic elevated insulin signaling and so those markers are going to be things like vitamin D levels osteocalcin levels magnesium again igf1 these sort of markers and these markers are actually not really measured in in cancer patients you know cancer patients struggle here in the UK when they go to an NHS clinic and they ask you know can I have my metabolic markers measured and unfortunately um the doctor say oh it has nothing to do with it no all you get is a full blood yeah yeah and so so the argument is is um well I say the argument with what we're trying to do with the study that I I'm near completion on now um acting as the control group is to move on into a brain cancer group and measure all these same markers and understand where do they fall on this spectrum and therefore give uh patients the ability to go to their onc ologist or their GP and say look um here's some published data you because they're always ask where's your evidence and say please I i' would like to have these measured um and and still why is that meaningful well the body supports the tumor and the body supports Health as well so you know the the there's all this sort of completely tunnel vision focus on just a tumor and not thinking about the environment that's supporting that tumor and and even if you you know people are going down the roote of standard of care there needs to be support for making sure the rest of the body can not only endure that standard of care but that can do the fixing and the healing as well yeah absolutely and and when I spoke to my oncologist about the ketogenic diet when I was first diagnosed it wasn't like now where we knew so much about it and we knew people who were doing this so the response was this is dangerous and this it still happens now but um it's about yeah having that data that we can show that says look there's not only people who are other people who are doing this for this purpose but also we have all this uh data from patients substantial amount of data on just metabolically what's happening and how it's a benefit not a detriment any and I think you know something that we've always gone on about and um essentially is sadly there's not a lot of uh money that goes into this kind of research obviously with regards to pharmaceutical investment there has to be the plan as what's the return right the business return on that um and that you know you've got great Charities out there um but those Charities also do receive a lot of funding from farmer well um and so that is going to influence their their own sort of remit in terms of what kind of research is not going to conflict with their larger donors um that's a big problem um and so for me I mean essentially is I really wanted to see this research happening and so I worked really hard to self-fund it and so all the research that's in the healthy cohort I've completely done all the funding for that myself and this has essentially halfed the research cost for the cancer cohort because research required staff you know fully qualified um scientists essentially uh who have all different trainings and you know have gone through all the safety and the licensing and all these things so first it requires a lot of staff to to um look after participants and samples and all these things as well as the consumables the Machinery so anyway all of this is is part of it and you know um with withs to Andrew and I you know we really want to put our money where our mouth is and we're doing fundraising now for the cancer section of the trial and the research is done by us so there's no siphoning off of anything left right and Center via Charities or via all these sort of things and we sort really wanted to emphasize that because um we've had a lot of dealings with Charities over the years in terms of trying to get things done and the the administration side and the the years just lost and you know another part of that for me is that years is lost these are people you know people who absolutely you know so we really trying to push it forwards ourselves yeah absolutely yeah well and that that is a problem with Charities I I've done I Comm Arian work and dealt with these sorts of things and I sort of come to the the uh you know the conclusion that quite a lot of this money is is just going to suppl things and not necessarily exactly what you you want it to to and so you know actually having it go directly to you know the research that's being done is is obviously much better you know most people like I I was my father was speaking to um like a regional director for Red Cross you know back in the 90s or something like that and he heard something about how you know basically like you know less than 10% of what you give to a charity actually goes to the thing that you want it to go to and he was quite appalled by that and and she said oh my God I wish I could get 10% to the actual project you there's so she's like you know if we get 5% you know we we consider that a win because there's just there's there's a lot of weird costs and people's salaries and trael and all these different sorts of and you know advertising a lot of a lot of these places advertise a lot and then um and then they're not actually getting the money where they want it to go to and that have people distrust Charities and and and rightly so in some cases and then obviously not be hesitant to to donate and so obviously that's much better that this money is going directly to what it's supposed to do and that's really good yeah literally there's no there's no middleman it just goes straight into the research financing the actual project nothing else outside of that yeah well it's really good yeah the um yeah that's I mean that's that's true too about you know having something to sell you know like so so Pharm pharmaceutical companies they want to return on their investment and so they want to invest in something that has something hey here's this product that I can sell at the end of it which is fair enough that's that's their incentive um I was speaking to Professor Thomas CED of Boston College who's done quite a lot of research into you know GBM and animal models and and ketogenic uh diets treating that and and he was saying the same thing he's saying it's very very difficult to get funding for this and to actually put this into human trials because there's no product at the end of this you know there's no there's no sort of money to say Don't eat carbs you know like to tell people not to do something it's supposed to to do something and he said that you know just eventually you just need hopefully there'll be an entrepreneur that sort of figures out a model of of monetizing that and then that can start driving that that process forward yeah I definitely think that you know there's so many more sort of Keto products and and things like that and I and I I do hope that they start actually funding this kind of research you know it's in their best interest I believe um for them to to do that so so people will always say oh that's conflicts of interest it's bias and like that and and you know that's always going to be that's always going to be there in terms you just want to hope you do hope that the scientific team have integrity and in that respect and understand that you know testing a hypothesis is testing to disprove it not testing to prove it and you just hope that they have that Integrity there obviously there's a bit of auditing on the team and things like that um but one of the ways that I've I've managed to do um to fund This research is actually through I've I've consulted for years and what I've done is made it so that when I consult the the clients that I consult for the fee that they're paying is actually directly to the research and that way it's sort of a win-win for everyone and they they wire it directly to the research and the university here is a charity so it's also not being taxed and that L if they were paying me directly myself it would be a salary and it would be tax and that would be a loss to the research as well um sort of one of the ways that I've managed to do that um and get this research funded so you know I mean people are just wondering how have I how have I managed to do that that's the method that I've been using really and then Andrew is doing fundraising through other way other methods yeah that's very clever yeah that's a good idea um and and Andrew what are some of the other fundraising methods that that you've been a part of um well it's just really uh I do Consulting as well and uh it's just networking and uh getting involved with with different events and um I do a lot of writing so um that helps too um I was editor for quite a while um for an organization called the international brain tumor Alliance and they work with the British neur oncology society and other brain cancer networks and Charities around the world so yeah I was an editor for a lot of the work and uh that opened a lot of doors uh so that was good that's good and I do medical writing freelance um and I'm write I'm actually writing a book on gadolinium oh yeah that be uh Illuminating in metaphorically figure and and literally it's illuminate an Illuminating subject what what about like like you know government grants and things like that is have they been in able to to get money in or is the NHS not really interested not so interested no but we do have links with um Imperial yeah so we do have we have we have been working on those links and those links are sort of really now starting to come to free because we have study underway because there's already proof of work so imagine if that hadn't happened yeah we wouldn't have been able to get a foot in the doorway really unfortunately from from having done this first trial and healthy people that has definitely um um well really I would say it's the proof of work and the initial funding that's gone into start making that happen you know they always say it sort of takes money to make money it's that sort of same same sort of thing so we are getting there on that and we will continue to push on that and uh but I do think that the reality is is that to really get this done it needs the public behind us in that respect make that that happen as soon as possible yeah well hope hopefully that just gets more public attention and you know you know getting on to different you know you new station and getting public support up for that because that that will hopefully Drive public dollars in that direction as well and or pounds public pounds and um and that's one of the things that that is a bit surprising to me is that something like the NHS and you know like the Australian uh Health Service that that is entirely in their best interest to get something like this going because we spend billions on treating these things I mean it is expensive treatment surgery is not cheap uh brain surgery I don't know what you've heard but it's not cheap and uh and then you know doing all the this chemo and radiation and ongoing uh treatment and follow up is is very very expensive and you know for for all cancers you know these things are are very expensive and to have you know hard science showing that like hey this this works and it doesn't doesn't cost anything in fact you're you're you're in fact it's a negative you're not doing certain things you know and then you and you just do this at home and you get some followup and that would C that would that would cut expenses from from the NHS standpoint massively massively so I I would I would imagine that they would be all for something like this I would add that the one thing I would add to that is with brain humors there this there's this approach for lower grade brain tumors brain tumors are grades rather than stages but means same kind of thing in terms of aggressiveness so lower grade brain tumors There's an opportunity because they tend to be more glycolytic and nobody knows what to do with them so they put them if it's an inoperable lower grade brain tumor they put them on this this uh treatment that's not a treatment where they say it's watch and wait so they watch and wait till it becomes aggressive now this gives you perfect a perfect opportunity to intervene with a non-toxic metabolic approach this is why whenever I hear uh Tom Saed being interviewed I am kind of you know yeah shouting at the shouting at the screen screen thinking you know why don't you mention how low grade brain humors are more glycolytic and there's greater opportunity during this window of time with watch and wait which is it's not a proactive Approach at all it's purely reactive and you do find that a lot of patients gets very anxious in that time that watch they want to do something and and so often they're asking their oncologists what about you know what other things can I do what about you know nutrition and either they get a referral to a nutritionist who has been trained in the standard yes nutritional guidelines um or you know with the sole focus on preventing Kia just eat as much as you can yeah eat as much as you can and get the calories in um or their basically oh you can eat anything you want it's nothing to do with it at all you know and um it's a bit disempowering as well it's misinforming it's disempowering um because patients in that situation in this So-Cal watch and wait phase you know they're they're anxious and really stressed and so to be able to get on top of Lifestyle measures will give them there's no confounding variables yeah there's no treatment you can't say yeah exactly exactly so you know there're all these sort of things that um we want to sort of bring to the public awareness um and again there's always that argument where there's no evidence there's no data but if you're not looking for it how why would there be data looking for it yeah and and you know and that's something I've seen directly you know I've had you know GBM patients come in and we're giving them their diagnosis and or following them up in in months and years and hopefully years and they they will say exactly that you know they'll talk to their oncologist and they say you know is there is there anything I can do can I change they want to do they want to be a part of this they want to have control in their life they because you feel very out I I mean I haven't had cancer but from the impression I get from people is that you get you you can feel a bit out of control all these things are happening to you but there's nothing that you can do to okay so what do I do what can I do I want to fight this I want to do something and they all and they all say that I think every single person that's come in and had a consultation when we've given them you know the bad news they've all said that okay what can I do you know how can I do this how can I how can I help and most people say you know just just go to chemo just focus on that all that sort of thing and then I've had patients who've gone to their oncologist and they've said you know well you know what should I do should I change my diet should just eat whatever you want it doesn't matter and I'm sure that they were trying to say that to be nice saying hey you know just don't worry about it don't stress just enjoy you know cake and ey I cream and stuff like you'll enjoy that but but they look so deflated when they were telling me that they just said yeah I mean there's just nothing you know they said just you do anything it doesn't matter and that is a very Deus attitude so it doesn't matter what you do this is happening to you whether you like it or not and you have no say and I I told them it's like you it absolutely matters what you do it absolutely matters what you eat you absolutely have controlling this this not this isn't over you know you you can do and I and I and I put them in the way of you know Professor sea Freed's work and I say look you know you need to be you know just the simple simply put if you're just as healthy as you possibly can be your body is going to be better able to fight this off and so here are some things you can look at so even just to manage the symptoms even if you don't think it's not going to any effect on the cancer you know quality of life is important yeah absolutely yeah and if you're you're just you're just eating these things that we know put people in in a very poor metabolic State and put them in an early grave like why would you recommend that in in the case when someone is is very unwell um that's exactly the time when you say Hey you really need to be on top of your health you know I think anyway have to go back thank you very much thank you really appreciate it bye great we'll see you okay well yeah well well that was that was great thank you so much for uh you know getting um her over able to to speak with us 1001 different things I know yeah well that's great well so you guys you guys are are looking to now get going on the cancer side of things and get the the treatment uh arm going um how is that looking when do you think you'll be able to start that and and how are you going to model it are you just looking at brain tumors or you looking at other other cancers as well it's just highgrade Gom brain tumors and um we're working with a cancer support charity called brains trust who are they're the ones that are recruiting patients for us so this is newly diagnosed highr GLA brain tumors and so psychologically there's a lot happening there um but I think as you say the vast majority of the time patients are very keen to do something and it's empowering not just having this opportunity to look at this massive um battery of uh what to call them just a they're all blood tests um which which can correlate with disease progression so pairing with the um Imaging uh we're looking at um I think it's over 90 different um metabolic biomarkers and then from that identifying patterns um and we're going to have hopefully 15 patients but we're expecting a few to drop out so it's likely to be around 10 um through the course of uh yeah through the course of time it's likely to be to take around a year and a half and it will allow us to see over the course of time what's happening metabolically and then identify patterns see individual differences and then determine what kind of interventions we can make and so the second stage would be Interventional um and not only that but as we said earlier it lays the the groundwork for multiple studies uh who can use this as a use not only this but what Isabella has done as a as a control yeah so it's nice to have the work that Isabella has done to act as a healthy control group rather than say most most of these ketogenic diet or k ketosis let's say these ketosis studies are on um athletes or very ill people so to to have a group of healthy normal people is nice to compare against yeah and and so and the treatment are you're just putting people in ketosis however they get there not necessarily like a full carnivore diet just just being in ketosis that's the main angle well for the uh for this initial study on cancer patients were allowing them to do whatever they want because it replicates a normal scenario and from that we can see um a comparison against the groups that Isabella has done with um participants in ketosis and out of ketosis and then not only that but compare against each other in the brain cancer group so you can have a million different uh conversations about this in the discussion and um yeah we will be doing that and taking account of every little thing that these people are doing and we have we are able to see the shifts over time and that that can tell you a lot yeah and hopefully because some of the patients will be coming from Ching Cross hospital they will be able to have the type of MRI scans that I was having initially where um it's a type of MRI scan called M spectroscopy and what it allows you to do is it allows you to see the B energetic demands of the tumor and from that I found my chuma was highly glycolytic so I thought oh this is you know something I can play around with and it allows you to assess any kind of metabolic approach over time because you can do these kind of scans routinely and you see those biochemical shifts um in the tumor the region where the tumor is or was and that's indicative of um the the high signaling activity that you find which shows either tumor progression or um areas of brain damage hyper excitability so you can identify where uh is are where seizures are originating from in the brain um but yeah you're able to pair it with different types of MRI scans to have more detail as to what that actually is that you're looking at all these scans are still fairly ambiguous so to pair that with the metabolic data get gives you a lot of information yeah interesting and then and then when you doing the the treatment arm where you're trying to to to intervene yeah so that would that will be um personalized ketogenic diets MH um very personalized because you have some people who will have different carb tolerances and different uh reactions to different foods so keeping that in mind also trying as much as we can to control sleep and uh medications and all these other factors or keeping those in mind at least because one of the most difficult things to manage will be if patients are on dexamethasone which is the main steroid um that um brain cancer patients are on to manage brain swelling and and that can raise levels of um that that can raise your blood glucose to the level of a type two diabetic so it's not ideal um ideally we'd want patients you aren't on dexamethasone but that's that that would make it harder to to get patience because it's standard it's you know it's it's unusual to not have that um at that at that point of having had their diagnosis yeah so yeah that's consideration but there's many many considerations which um aren't necessarily a bad thing because as I say it represents a normal distribution is well a normal a normal cohort normal range of participants yeah and so are you going to try to do that at at you know just after this at the same time that you're getting sort of um data on the cancer patients or you going to do that at a later stage or or when will you be doing that so that would be the the second stage after we yields uh meaningful data from the cohort that we have and hopefully they're still alive for the second stage um but in in the meantime they can do whatever they want and it it it's all meaningful later so it's not like it's not like we're telling them you know just uh go on this cupcakes and things like that yeah yeah and and I suppose even just by by meeting you and hearing your story I think a lot of a lot of these are going to people are going to be interested in that and maybe give that a try I hope they do um and you you you talking about just the low corade clom you're exactly right I mean we see people all the time with lowr gomas uh depending on their age if it's in an operable area you know things are shown if you get a complete reection um if you're under 40 that confers a much better long-term outcome than uh than if you don't and or if you do it over 40 uh but obviously not all all tumors are in a in a good area that's that's um possible well anything's possible you can do but you'll just destroy someone or kill them and so if you're in one of those areas then uh we we you're exactly right we just say okay well we're on surveillance and we'll just keep an eye on this and you know every year we'll take a look and uh and then when that has those highgrade changes then we'll think about doing a biopsy and see if it's you know if if the patient deems that it's worth the risk of getting that biopsy uh to then undergo chemo and radiation which would be the only options for them at that point and because you know we see this and you know we don't technically know exactly what it is and that can change the the chemo and radiation options or the chemo options really and um and so the the oncologists are obviously you know understandably quite reticent to start anything without an actual biopsy so you know we just we play that game and unfortunately it's not a great option um have you thought about getting a a you know looking at at that and getting some lowgrade uh lowgrade Goma patients on on a study arm as well no because you would see um yeah there are a few reasons um having aggressive disease allows you to see things much quicker yeah true um and also it's the uh the most common type of R humor unfortunately is a glob blastoma or a highgrade glma so it would be easier to yeah to look at highgrade Gom focus on highgrade Gom but I would love to do a low grade uh brain Shima study mainly because it's uh much simpler and also because uh there's less um there's less problems that you can have when you're even having them come in to take blood and spending the whole day doing all these tests you know these patients may have epilepsy or they may feel nauseous have no energy um there's all these psychological considerations to think about um and also another consideration is what medications they're on if they have epilepsy there's certain anti-epileptic drugs well all anti-epileptic drugs will cause nutrient deficiencies over time and ironically these can make you more prone to having CES so the response is often let's put you on more medication to control the epilepsy and then you're just feeling like a zombie all the time because you're depleting yourself of um certain micronutrients that you are important for mood function and having any en and um yeah managing your managing sees that's something I found through various tests when I was on the medication just that it was I found it highly ironic how I was on this medication to control my epilepsy but over time had acquired all of these deficiencies um and so when I addressed that it was much easier to come off the medication yeah but people wouldn't their oncologists don't or their neurologists don't tell them these things they don't even acknowledge it as being a thing even though it's in the literature and it's well established they do now it's gotten a lot better now is it when I was yeah it's good um especially in certain regions in this country so in Oxford the neurologists are very good even are referring patients to places where they can get medicinal cannabis which is a very recent thing and it's you still have to jump through lots of Hoops to get there it's still very difficult but um they are a lot more open-minded um and that wasn't the case when I was diagnosed so it is getting better but you have to know who to see and where to go and often you have to spend lots of money well you see this some some some times you'll even see the same person privately that you would in the NHS but privately they could tell you things they wouldn't tell you on the NHS and they can spend more time with you so they look at they look at you holistically rather than just um being narrow focused you know yeah well you working in the public system and I can I can I can affirm that that you're not giving much time we'll get we'll get patients basically in in 15minute slots and we'll have three patients at 8:00 three patients at 8:15 three patients at 8:30 I'm like what the hell are you doing like there's one of me why how am I supposed to see three people at the same time and even if you have two people in clinic you still only have two people that in clinic and so you're not going to see three people at the exact same time and so you're just you're just in an absolute Rush all the time and that that obviously hurts the patient and that's that's the problem and because you these these consultations simply do take longer than that and and um some of them are just a quick in or out yeah here's your MRI it's good you're fine we'll see you in a year and others are not and so you know you have to you you have to be able to take the time with people and I'm I'm sort of on the added issue because you know I see these things and no one's talking to about their epilepsy like four different anti-epileptics and they're still having seizures I'm like has anyone talked to you about you know ketogenic diet they're like no I'm like all right well sorry one and um in regards to General um research on ketogenic diets and brain tumors one of the main Windows of opportunity the reason why that actually came about was predominantly due to the fact that brain tumor patients often have epilepsy so through that you know through that Avenue um that's how that research came about otherwise I don't think we would have um come where we have with it even though it has been still been very slow and there's been lots of resistance I yeah I don't think it would have got anywhere near that without um fact that there's yeah patients experiencing these seizures even so um when I did first approach my neurologist about this he was saying well um we have no evidence for brain sh related epilepsy it's only children with drug resistant epilepsy with these very special conditions who would respond to a ketogenic diet but if you know about the actual mechanisms of action which there are numerous I think we're still discovering new ones all the time but if you look at the mechanisms of action it's you know there neuroinflammation and it's uh combating that and it's this hyper excitability of the neurons which it's you know it's kind of dampening and controlling so yeah it's it's odd how they're just um not willing to to even consider the idea um there's still some resistance in the that for that yeah and unfortunately I've spoken to some people that just say like well you know we we you know we find it's just it's just so difficult to uh get people to to change their habits it really don't want to so we just go to medication as a first line but they don't they don't use keto as a second line either you know they they just stay with medication and that's how it's taught and that's how it's uh practiced and so it you know to me I think diet if you if you have something in in the literature that's that's quite clear uh that this this provides benefit that's your that's that's your first line and if you can't convince them to do it or they can't uh you know maintain that they're not compliant sure you know you have you have medications as Alternatives but why wouldn't you at least try why wouldn't you at least have the conversation and bring it up I was at I was at the Children's Hospital and and again you know we're talking and they were talking about all the literature for you know you know pediat the Pediatric population with refractory epilepsy uh there was a there was a child who was having seizures and it was quite subtle and people didn't know what was going on and I actually went there I'm like look no she's seizing you know look at her eyes look for pupils all these things like this is seizure activity and you know we need to give her U you know um you know some adzz Lam you know get her get her settled down and I was talking to the mom while while we were getting that done and and I just talked to her I was just like you know just just by the way you know this this is something that we have 100 Years of literature on or 90 at least and uh you know if you just go to a ketogenic diet and cut out carbs and sugar this really helps she said oh really like yeah that sounds great right like that you know it was just like yeah gonna get on that you know even even as a even as an in even as an immediate intervention in that situation you could administer um magnesium sulfate intravenously as they do preclampsia the seizures in preeclampsia that's what you do so why not have that uh approach rather than having the the medication yeah absolutely yeah that's a good point yeah and one of the other main problems with this is um caner patients often experience uh gut disbiosis right so one of one of the issues that we have with the ketogenic diet at the moment is um people are for some reason it's become a thing afraid of animal fats so the adopting these plant-based ketogenic diets and that's causing a lot of issues where people are saying oh I'm I'm trying a keto diet and it's not working for me and um yeah I'm not going I'm not going to have these animal Foods because it's not going to be good for me so um you know how much uh how beneficial animal animal derived fats are for the brain so yeah uh that's causing a lot of issues because the fatty acid profile of the diet is probably the most important thing if you think about it um and so yeah it's just avoiding these seed oils and um having uh making sure the Omega 3 and six ratio is optimal because you know the um most the most important uh or one of the most important fats for the brain for controlling epilepsy and also with brain cancer is to HOSA hexanoic acid so the omega3 fatty acid that's predominantly um composed in the brain um that's that's the most important thing to focus on with these diets and if you're having a plant-based form of that it's devoid of that you know so m not going to help no and so and so for you now what what what's your go-to diet now what's your go-to uh you know regime for yourself to to to maintain Optimal Health in this situation yeah well it's interesting because um I don't have to weigh my food anymore my tolerance is improved massively most of my meals are um carnivorous meals so it' be like a lamb heart I eat lots of lamb Hearts mhm um CU they're they're cheap and I know it's it's grass-fed as well and it's from usually a local farm so that's easy to get um um eggs you have a lot of eggs making sure they have the nice orange yolk um from you know a good source uh because I think that's really important um yeah Focus mainly on the egg yolks so I don't tend to eat much egg whites um and I can tolerate things I couldn't before like uh avocados which I couldn't have before I'd have a horrible reaction to them you give me migraines um I still I avoid most cheeses but I can have goats cheese um if I have any other cheeses it gives me horrible migraines especially AIDS cheeses that's I think that's due to the tyramine that's a that's a known migraine trigger so I avoid that um I do a lot of fasting um fasting now just because it's convenient and I'm more productive have more energy uh but I can get addicted to that so I don't do it as often as I used to um and I don't do extend extended fasts like I used to I used to do a lot of extended fasts um and my personality is such that I can obsess over these things um because my background is before this was Sport and exercise so very competitive with myself um and so yeah I think um I do a lot of walking as well that's crucial to mention actually because I noticed there's um a therapeutic zone of my blood glucose and blood ketones that I need to stick within to feel for my brain to feel normal um otherwise if I slip out of that zone I begin to experience um this lowlevel Caesar activity which reminds me that oh yeah I need to I need to not relax too much and the The Walking helps that tremendously so I average at least 20,000 steps a day without even thinking about it and the most important aspect of that is my morning walk so as soon as the sun comes up at the moment takes a while so I start to walk in darkness but it eventually comes up I I I expose myself to the morning light and I go for a walk and if I don't do that walk then my seizure threshold isn't as high and I experience this low level Caesar activity so staying in bed is not good yeah so yeah lots of walking um many carnivorous diet ate two meals a day every day um sometimes ate one meal a day but then that's that makes things difficult because then I have to eat more on other days to keep my weight up I lose weight very rapidly um but I've managed to know how to put weight on now which is nice and I've done some experimenting with resistance training I'm really interested in trying the X3 bar which I think you've tried yeah um and uh yeah so that's the next the next test on myself um to to do more resistance training because ex glycolytic exercise can be a seizure trigger for me so I need to ma manage my breathing the breathing is a huge a huge thing just um interestingly with epilepsy you can actually if you're having um like a an aura or about to have a seizure you can um administer carbon dioxide like um like an oxygen tank you have carbage in and that can reverse a CER it's an interesting thing that I I was surprised about because if I'm in a stuffy room with poor ventilation I feel like I'm more likely to have a seizure which is true but then I was surprised that carbon dioxide seems to help and uh if I have carbonated water it seems to help raise my seizure threshold as well I'm not sure why that's but maybe it's something to do with that yeah and so administering CO2 would like breathing into like just a plastic bag and rebreathing your own CO2 would that be something similar or probably yeah I'm not sure that would have the same effect the opposite effect yeah um yeah it's surprising what you could do on your own you know without having like a tank of CO2 with you you know well there's this um thing called the breath exchange method um whereby um there's actually this this um amazing woman I interviewed on my podcast um called GMA herbertson she um had this um technique that she adopted where by her son who had who had uncontrollable seizures she would um breathe through his nose when he was having a seizure just like kind of like rescue breaths you know if you're do CP and it would it would stop his seizures and that that's the same kind of idea it's the car you know carbon dioxide it's breathing in seems to have that benefit very interesting I wonder why that is has there has there are there any studies that you know of that sort of talk about why in God's name that would be there's quite a lot but I've been quite lazy and I haven't looked into it more I just it's I just know it's a thing but it's yeah it's really interesting I can uh share that with you if you want to it sure notes yeah that would be great great well well Andrew I'm conscious of your time um you've been very generous with me today I know you're you're at work today that sort of have we figured this out you're at work and I'm uh it's sort of later at night so thank you thank you very very much uh for coming on I I think it's absolutely amazing story I'm so glad to hear uh that uh you're doing so well and and that you're not only and you're not just sitting on your laurels about it you're you're trying to get out there and and try to get data and show like hey you know does does this work for other people as well it really should you know you have you have a very specific spefic type of brain tumor that's more aggressive than other types of very aggressive brain tumor and aren't really thought to be uh survivable that that's what we tell people in clinic that this is not a curable disease this we can extend life but we can't uh cure this that's that's what that's what we have to say to people it's not a very easy thing to say to people and so I'm I'm very very happy to see that you're doing so well and then you're trying to get this out there to more people and actually get the data and show whether this works for other people or not which I would I would imagine that it that it would um because i' I've seen it work for other people as well I I know people personally who have had uh very good results with this sort of approach and but that's not clinical trials that's not to to influence anyone um in that way or another it's just to talk about interesting examples um like yours uh how how do people get a hold of you and in touch with you uh look at your podcast donate uh to your uh research if they're able to yes so the website for the study is uh um www. beat brain cancer. co.uk and we'd welcome any donations you can find out more about the study there as well um and I have a yes I have a podcast called the human guinea pig project where I interview people who have interesting story to stories to tell they may be patients or researches I talk a lot about the galini uh with um I'd say a real Pioneer of this Research into the recent observation that gadolinium is um retained in tissues particularly in certain regions in the brain and um I was influenced so much so by that that I'm writing a book which hopefully um a book on the subject which hopefully will be available um towards the end of the year or beginning of next year I'm doing editing on that at the moment um and what else I'm on Twitter at a a scarbs it's kind of unfortunate the naming I'd only figure that out afterwards um yeah that's every I suppose thank you very much for your yeah for having me on and you're very welcome discussing this very important subject I think so too so uh well thank you very much I appreciate your time and hopefully get a chance to talk to you again soon great thanks [Music]