Friday 29 January 2016

Testing 1.. 2.. 3.

Yesterday I had a myriad of blood tests which prove once again that I am not only a human Guinea pig, but a human pincushion as well. Let's just say the nurse wasn't particularly gentle with her approach to collecting blood samples for analysis. I have these tests done every 3-6 months to keep an eye on various health markers so that I can keep on top of everything and maybe make some adjustments if I need to. Just some of the tests I have include: 

Full Blood Count (FBC)
Bone Profile
C-reactive protein
Renal function test
Tricglycerices
25 hydroxy vitamin D

I find that the C-reactive protein test is very important because on of the characteristics of cancer progression is that it goes hand in hand with systemic inflammation. There is a relationship between favourable readings from this test (low readings) and better cancer survival rates that we can see in the literature. 

Here is an explanation of the validity of the test as summarised in the literature. 

Elevated C-reactive protein in the diagnosis, prognosis, and cause of cancer. http://www.ncbi.nlm.nih.gov/pubmed/22035340



I should have the results in 4-5 days and then I will scrutinise them myself as I usually do rather than rely on the doctor's typical non descriptive response of 'oh yes, they're fine' or the familiar 'no action needs to be taken' response that means very little. Measures to simply avoid deficiency or serious complications are not always enough when you are aiming for optimal health which is why I have my own targets for these measurements. 

Among these tests I had an ECG which I don't have very often but I do believe it is important, particularly as I play around with my sodium, potassium, and magnesium ratios which can all effect heart rate and blood pressure differently depending on the ratios you use. 



From all of the reading I have done it seems that trial and error is actually the best way to determine the correct ratios for the individual but I have noticed that it is certainly appears more beneficial to have around 2:1 ratio in favour of potassium to sodium and magnesium should probably be taken according to how you feel even though that sounds like a wishy washy answer. I would say to definitely supplement as mostly everyone is deficient, especially those with neurological conditions, but to go with how you feel. This works brilliantly for my seizure control at least.

Magnesium chloride taken orally (as I have it) can slow down the heart rate and can cause individuals to retain water (in this form) so balancing it with potassium citrate which will allow you to expel fluids is beneficial if too much magnesium chloride or sodium chloride is ingested. This is what I have found through personal experience and from having kidney stones when I didn't take enough potassium citrate in my diet. 

Not enough potassium citrate made my urine very acidic as I am on a very strict ketogenic diet and I also consume a lot of animal fibre which is high in oxalates in the form of chitin from insects. Ironically insect fibre is great for the gut microbiome, but not so much in the conditions I was feeding it. 

Potassium citrate, therapeutic ketogenic diets, and kidney stone prevention: 



Insects and gut health: 


Animal fibre: 


It's like growing a plant, under the right conditions and the right balance of nutrients all of your body systems will flourish and blossom. That was a rather 'hippy' and stickly analogy but I'm sure you get what I mean! Potassium citrate alkinilises the urine for me and keeps everything ticking along nicely for my heart and the smooth flowing functions of my kidneys. 

I check the colour of my urine often to manage the efficiency of my kidneys and I have urine and blood tests regularly for this. They are perfect now, I learned a very valuable lesson from having the kidney stones in September and I'm actually very thankful for that because it was a great lesson. I wouldn't have said that at the time though!! 

Eventually the stones were too big so I had to have a ureteroscopy to zap them so they could pass. It was pretty unpleasant but my pain threshold has increased over the past few years so I was in a great position to get through it. I'm stronger and wiser from the experience and I learned a great deal more about urology. Silver linings. ;) 

I'm going to write a post about week 2 of HBOT later today or tomorrow. It was a very tipsy turvy week and once more I learned a lot through having 'complications' of doing this treatment with such sensitive epilepsy. 





Saturday 23 January 2016

Week 1 of Hyperbaric Oxygen Therapy (HBOT)

Hyperbaric Oxygen Therapy means the delivery of oxygen under pressure at different 'depths' or 'atmospheres'. People use HBOT for a number of reasons to help with neurological conditions, cancer, diabetes, sports injuries, tinnitus, stubborn infections and ulcers. It can also speed up wound healing and recovery from radiotherapy damage. 




Under the right conditions, brain tumours don't like oxygen. Typically for brain cancer patients an oncologist would only advise the treatment for radiation induced necrosis and you would most likely have to ask. Radiation necrosis can be a huge problem because it can cause a lot more mutations. I never had this problem thankfully but I would recommend HBOT to help treat any cancer. 

Regarding radiation necrosis:

'In the clinical situation of a recurrent astrocytoma (postradiation therapy), radiation necrosis presents a diagnostic dilemma. Astrocytic tumours can mutate to the more malignant glioblastoma multiforme. Glioblastoma multiforme's hallmark histology of pseudopalisading necrosis makes it difficult to differentiate radiation necrosis from recurrent astrocytoma using MRI.' http://emedicine.medscape.com/article/1157533-overview




HBOT is also great for combatting extreme fatigue like ME/Chronic Fatigue Syndrome. The Oxygen Therapy Service I am using is provided by Hertfordshire Multiple Sclerosis Therapy Centre. They can be found at http://www.hertsmstherapy.org.uk/ The chamber fits up to 7 people at a time.

Cancer patients can get the treatment at a reduced fee by contacting Yes to Life at www.yestolife.org.uk



As readers of this may be aware, I am aiming to get similar results to the encouraging animal studies using a restricted ketogenic diet and HBOT as a powerful synergistic treatment for cancer management. http://journals.plos.org/plosone/article?id=10.1371%2Fjournal.pone.0065522

I also draw inspiration from Ketopet. Dogs get even more brain tumours than humans so it is inspiring to see positive results from this treatment at the Ketopet Sanctuary. http://www.ketopetsanctuary.com/

Note: a lot of people take antioxidants during HBOT. DO NOT DO THIS!! Think about it, HBOT works, in part, by stimulating pro-oxidant mechanisms. You don't want to reduce efficacy of the treatment. 

Below is my timetable. I have treatment sessions every weekday over a 4 week cycle. The depth decreases progressively as the weeks go on.

On my first day of HBOT I was nervous but very excited. This was to become the last big piece in the jigsaw for me (there are still lots of little pieces) for me as part of my metabolic approach, not just for management of the cancer, but also to treat the lingering invisible disabilities that refuse to go away completely. 

My lifestyle had been incredibly strict leading up to this, following a 90% fat, 10% protein restricted ketogenic diet but I felt unwell after a couple of weeks so decided to stick with my 85% fat, 15% protein ketogenic diet. Every day during my treatment I am consuming oily fish and omega 3 enriched eggs with added fat and very little else. Sounds boring but its consistent and its the exact same food every single day.

I have also chosen to be more active during my treatment because I have been more sedentary since being back at university. Every day I am simply walking more and last time I did it my body composition changed incredibly quickly. Its easy for me to lose and gain muscle in my thighs in particular and around my shoulders. The only problem I have is that I dislocated my shoulder last Thursday so I'm just sticking to the walking in the park for the moment until it heals. I use the Cleanspace app on my phone to find the places in and around London with the cleanest air.

To achieve a more favourable body composition and to see how HBOT might affect this I decided to have body composition tests using a 'Bod Pod', which measures body composition via air displacement. Somewhat surprisingly to me, since starting university I had lost a significant amount of lean tissue due to inactivity, continued short fasts (a few days at a time-longest 9 days), and inconsistent sleep patterns. I was determined to drastically change this and so far I have.


Bod Pod body composition analysis

Bod Pod results: Lean weight- 46.9 Kgs. Fat weight- 10.7 Kgs
Percent Fat- 18.5%
Percent Lean- 81.5%





Energy Expenditure equations to calculate restricted ketogenic diet ratios.




Ketocalculator graph representation of my diet based on my Bod Pod results http://keto-calculator.ankerl.com/



I also need to reduce my exposure to electromagnetic fields however as it is clear to me from my research that this is very important. The following study on EMF and epilepsy provides a good example of what effects continued exposure can potentially have on the brain.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3659130/



On May 31, 2015 I had achieved what I consider to be my 'ideal' body composition considering I am on less that ideal (for general health) very strict ketogenic diet for cancer management. I was incredibly lean and my body fat was 5%.





My diet aims to consistently mimic a long fast. This is even more important during HBOT.
Source of graph: http://europepmc.org/backend/ptpmcrender.fcgi?accid=PMC2279566&blobtype=pdf


I'm creating my own graphs of blood glucose and blood ketone readings just before I go into the HBOT chanber to increase efficacy of the treatment. The data represents week 1 of HBOT. Theory suggests this can help to manage the cancer better in reference to the Glucose Ketone Index. The line at the top is blood ketones and at the bottom is blood glucose.

As stated in a previous post, professor Thomas Seyfried has informed me that:

'It will be very important that your GKI is 1.0 or below when you receive HBOT (our GKI paper is attached). Our preclinical data on GBM show that oxygen therapy can increase tumor growth except when ke
tones are high and glucose is low. Use HBOT only at the time of day when your blood ketone levels are highest and you glucose is lowest. You will need to determine time this for yourself. I think this will be the most important consideration.' 
Here is the paper...

http://nutritionandmetabolism.biomedcentral.com/articles/10.1186/s12986-015-0009-2




So How was my first week of HBOT?

Prior to my first session I was quite anxious as I feared breathing in such a high concentration of oxygen in a pressurised environment might trigger seizures. I say this as I have 'reflex epilepsy' due to it being acquired through an acquired brain injury (the tumour and subsequent brain haemorrhage I suffered in early 2013). Reflex epilepsy is seizure activity that occurs as a response a trigger or triggers and I have many which I manage through diet and lifestyle modifications. This is not uncommon when it is as a result of brain tumour related epilepsy (BTRE), particularly when there is no visible tumour after remission. I was slightly concerned about oxygen toxicity seizures during the treatment. You can sometimes have too much of a good thing! It can also help epilepsy though. :)

As a precaution I go in with high ketones and drink water with a high concentration of magnesium chloride to prevent oxygen toxicity seizures. Please see my post on magnesium to see how I get success with this approach. These seizures are a common problem for some. http://www.ncbi.nlm.nih.gov/pubmed/24377194

Here is a great summary of everything I need to be aware of to manage the epilepsy on a day to day basis... http://drlwilson.com/Articles/epilepsy.htm

Back to HBOT, we all had our individual masks and I made sure to drink lots of water before going in to the chamber. The chambers that only have one person per chamber do not require the mask.



Within 5 seconds of the chamber being pressurised to the desired depth we started to feel the pressure get to our ears. I could feel the little, tiny tubes in my ear (the eustachian tubes) close up as the pressure in the chamber increased. This simply means that when the pressure on the outside of my head is greater than the inside, the tubes begin to close and if ignored can cause a lot of pain, discomfort, and complications. We need to equalise the pressure by popping our ears by building up pressure on the inside of our heads. At this point I hadn't put my mask on as I needed to pop my ears many, many times until we reached the resulting depth. It was similar to being on an aeroplane.




It takes 10-15 minutes to pressurise the chamber. I experienced noticable discomfort during my first time as I was getting used to this sensation but after 5 minutes I felt absolutely fine. It wasn't at all painful, just odd! The best way I found to 'pop' my ears was to hold my nose to build the pressure up inside my head so I couldn't have the mask on for this yet unfortunately. I felt it more in my left ear than my right which isn't unusual so that was reassuring.

After this period of aclimatisation I placed on my mask and felt like a cross between Darth Vader and a fighter pilot. :-p

The treatment session lasted an hour after the acclimatisation period and it felt very relaxing sitting and enjoying the oxygen. I used the 15 minute time periods during treatment to cycle into deep breathing. I was aware of hyperventilation so I was very conscious of my breathing rate and wanted to maximise the benefit of the treatment in a considered manner. I found it very calming but began to get very thirsty towards the end. I had some slight seizure activity as the treatment was finishing but this felt much better after rehydrating after the session had been completed. As the pressure was decreasing my ears felt like they had a load of rice crispies in them popping frequently. It was a funny sensation.

The treatments following this were fairly non eventful and quite enjoyable. I feel used to it now and my ears don't seem to react as much to the pressure which is interesting. I like to do a lot of reading when I'm in there. Another thing I have found is that I am very restless at night but it may be too early to be experiencing any other changes that may be beneficial. Apparently this takes at least 10 days of treatments to notice anything significant and most likely at greater atmospheres so I expect to feel 'different' towards the middle of the third week personally. I feel I am benefiting already but I am aware of any possible placebo effects. I have also been told that after adjusting to the first change in pressure, as the weeks progress you don't really notice greater atmospheres much as the cycles go on. I found that very interesting!

I am also noticing better sleep quality. Quality sleep at the right times is essential for managing any kind of cancer, this is actually one of the reasons why scientists suggest blind people have significantly lower incidence of malignancy. Blind people are at lower risk for the development of many, if not all, cancers: http://link.springer.com/chapter/10.1007/978-3-642-59512-7_27

Each treatment takes an hour and a half in total. I'm looking forward to my second week. :)


My blood glucose and blood ketone readings just before my final session of week 1:




Sunday 17 January 2016

Omega 3 experiment- the fishogenic diet

This was just a fun experiment because I get bored sometimes. I wanted to increase protein to see what happens. The end result is nothing much! These are typical readings for me but it's interesting how eating more fish doesn't change much compared to other sources of protein. I could eat half the amount in red meat and the effect on my blood glucose would be twice as much. That's why I don't eat much red meat and when I do it's just lamb heart. 

I would definitely recommend red meat on ketogenic diets, I just do this because of its easier to consistently stay in therapeutic ketosis for cancer management this way. Tomorrow I start hyperbaric oxygen therapy. I have my own diet protocol for that which is quite different but challenging to explain. It will be a whole lifestyle change starting tomorrow and not just diet related. Should be fun! I went for a long walk early this morning and then decided to eat a little bit differently to compare results with my normal diet (restricted protein, organ meats, fatty insects, no carbs). I quite enjoyed this as something simple and different to my usual routine. It does feel strange on my stomach having plant fibre again as opposed to animal fibre but I don't mind too much. It's tolerable. 

For the experiment I increased meal frequency, protein intake with foods high in omega 3 fatty acids, and added some plant fibre-coconut flour, flaxseed, avocado.

Today's food experiment: 

2 omega 3 enriched eggs, 50g ghee, 8g coconut flour- makes a coconut flour 'bread'

2 omega 3 enriched eggs, 50g ghee, 10g flaxseed- makes a flaxseed 'bread' 

1 avocado 
(I can eat these now so I do occasionally. A great source of potassium to complement the magnesium supplementation)

Macadamia nuts- 25g
(I don't normally eat these, I just didn't want ketones to get too high so I added them. Sounds strange but I'm consistently in deep ketosis and don't want it to be above 5.5mmol/l)

154g sardines, 20g ghee, black pepper, cumin, sea salt

Supplements: magnesium chloride (375mg), potassium citrate (600mg)






Conclusion: don't worry too much about increasing intake of sources high in omega 3 fatty acids on any kind of ketogenic diet. It's unlikely to make too much difference, particularly if it is from oily fish. These foods compliment a ketogenic diet very well and will probably actually give you more consistent readings. Your brain and heart will also be very happy! I still personally think this is more important than ketones. Diet is about ratios of a number of chemicals to get the right balance for all body systems to maintain a happy medium so it can't just be about the ketones! 

Thursday 7 January 2016

Want more widespread awareness of metabolic therapy?

Please vote for my blog if you want the world to know more about metabolic therapy and ketogenic diets for cancer management. The field of nutrigenomics is an exciting one, full of promise for 2016. 

I'm under the category of 'Health and Social Care http://blogawardsuk.co.uk/ukba2016/my-entry/mybraincancerstory


DHA- More important than ketones for brain cancer management?

What is DHA and why is it so important?

DHA is Docosahexaenoic Acid. Its a bit of a mouthful so you can see why we just call it DHA! It is the preferred dietary n-3 Fatty Acid for the development of the brain and the retina. It is essential for brain maturation as we age and the literature shows that with neurological disease we see a significant decline in DHA in the brain compared with healthy brains.

When we look closer at how DHA is so incredibly important in how our brains develop, it reminds me of the fact brain cancer is the biggest cancer killer of the under 40's. I see a lot of children with brain tumours, particularly neuroblastoma. With this in mind I feel it would be irresponsible at best to not make dietary adjustments to optimise DHA intake while also monitoring vitamin D status in paediatric brain tumour patients, particularly as they're brains are still developing. There is the possibility of, at the very least having neuroprotective benefits to combat neuroinflammation and perhaps the harsh treatments families may wish to pursue for their children. I have seen unequivocal evidence of the benefits using this kind of approach on children with neuroblastoma in the literature but it is not applied clinically. I believe this should be standard practice. 

The most interesting work I have seen with DHA has been observations of brain tissue in gliomas. Even though I was diagnosed with a high grade glioma, I assure you that I am not just being biased, I wanted to show that even in the worst case scenarios DHA has a profound impact on optimal neurological functioning. Is it as a cause or a consequence? I don't know, all I can do is share the information and provoke discussion. Can we reverse disease by changing the environment within these tissues? Quite possibly!

This is the biggest study that caught my attention for obvious reasons and the reason why I try to keep as close to a 1:1 ratio of omega 3 and 6 fatty acids as possible. The majority of my omega 3 intake is DHA. EPA is also very important, and so are some omega 6 fatty acids, but the main issue is typically too much omega 6 and not enough omega 3, which can promote a more inflammatory environment. Far from ideal. Here's the main study I found a while ago...

The fatty acid composition of human gliomas differs from that found in non-malignant brain tissue. http://link.springer.com/article/10.1007/BF02587914

I put that in large print and in bold because I cannot overstate the importance of these observations not just for brain cancer, but also other neurodegenerative diseases as I say. 

So we have established that DHA is critical for maintaining normal brain structure and function, and is considered neuroprotective. These are not just statements without foundation, they can be backed up by facts as we see here for example.  http://www.sciencedirect.com/science/article/pii/S1098882311000438


Where do I get my DHA from?

It is well understood that DHA is the active component in fish which is why I eat a lot of oily fish! There is an exhaustive amount of research showing that fish oil helps to reduce triglycerides in the blood and decrease thrombosis, it prevents cardiac arrhythmias, etc. so I won't bore anyone by listing all of these studies.

As well as oily fish like sardines and mackerel (the oilier and fattier the better), I also eat ghee, sweetbreads, other organ meats high in omega 3 fatty acids. I used to eat brain a lot but sadly I stopped as I believed there may be a slight risk of scrapie living in the UK. Healthy brain is probably the best thing to eat on a ketogenic diet as it has everything nutritionally that brains need to thrive. Why? Brain is highly enriched in long-chain polyunsaturated fatty acids (PUFAs), particularly arachidonic acid and docosahexaenoic acid, which play important roles in brain structural and biologic functions as we have outlined.

Even though the risk of scrapie (a neurological disease that sheep get that is similar to 'mad cow disease (CJD) is minimal, I didn’t want to take my chances so I just stick to sweetbreads which are a fantastic organ meat with similar benefits to brain. It’s the perfect ketogenic food, I made a video showing why here…https://www.youtube.com/watch?v=5EU9q8Ywvus

This correlates with beneficial postprandial blood glucose and ketone readings and makes me feel all fuzzy inside after consuming them (in a good way, its not a type of worrisome infection). If you cook them properly they are very similar to chicken and like fish they go well with tarragon or cumin. 


In summary, in reference to the glioma studies we can see…

- Levels of the polyunsaturated fatty acid (PUFA) docosahexaenoic acid (DHA), are shown to be significantly reduced in the glioma samples compared with normal brain samples.

- This reduction in glioma DHA content is also observed in terms of phospholipids.

- The phosphatidylserine and phosphatidylethanolamine phospholipid classes were shown to be reduced in the glioma samples.

- Differences were also noted in the n-6 PUFA content between glioma and normal brain samples.

- The glioma content of the n-6 PUFA linoleic acid was SIGNIFICANTLY GREATER than that observed in the control samples in terms of total lipids.

The observations speak for themselves and it would be difficult to argue with these facts so I'll just rattle off some more information from the research I have read on this this and that I find relevant. I find this absolutely fascinating and so important. I feel we are missing a trick here, especially when we look at ketogenic diets. The need to take this information into consideration is vital and we must attain a suitable ratio of omega 3 and 6 fatty acids if we want to improve efficacy for anyone with any kind of neurological disorder or disease. I wrote another post a while ago about how I monitor this. The post can be found here... http://mybraincancerstory.blogspot.co.uk/2015/07/omega-3-test-time.html

You can find more information at www.omegasense.com


Here are some more facts I find interesting about DHA.

- Protects neural cells from stress induced apoptosis while exerting anticancer effects. It has been shown to induce apoptosis in neuroblastoma, an embryonal tumour of the sympathetic nervous system. I touched on neuroblastoma earlier in the post. Here is the study- http://www.fasebj.org/content/24/3/906.short

- Omega-3 dietary fatty acids (fish oil in this case) reduce the risks of macular degeneration and cancers. Here we see that epoxydocosapentaenoic acids (EDPs), which are lipid mediators produced by cytochrome P450 epoxygenases from omega-3 fatty acid docosahexaenoic acid (DHA!), inhibit VEGF- and fibroblast growth factor 2-induced angiogenesis in vivo, and supress enothelial cell migration and protease production in vitro via a VEGF receptor 2-dependent mechanism. http://www.pnas.org/content/110/16/6530.short


- Fish oil decreases the proliferation of tumour cells, whereas arachidonic acid, a long chain n-6 fatty acid, increases their proliferation. These opposite effects are also seen with inflammation, particularly with rheumatoid arthritis, and with asthma. http://www.sciencedirect.com/science/article/pii/S1043661899904954



I like this diagram from www.lifeextension.com



I hope that I have been able to reinforced just how much adequate DHA is ESSENTIAL for brain development and protection but it doesn't quite end there! While we are also aware that DHA is primarily obtained through the diet or synthesized from dietary precursors, we have challenging problem we must overcome... the conversion efficiency tends to be rather low. How do we overcome this?

This is where another seemingly magical anti-cancer ingredient, curcumin (diferuloylmethane), can help. Curcumin is a principal component of the spice turmeric, and complements the action of DHA in the brain beautifully. Not many people seem to know this to my surprise.

Some facts about DHA and curcumin that people should be aware of:

- curcumin increases DHA in the brain and liver.
- Dietary curcumin and ALA reduces anxiety-like behaviour.
- Curcumin elevates enzymes involved in the pathway of DHA synthesis.



How does it do all this?

DHA synthesis is increased by curcumin, via an FASD2 dependent pathway. http://www.sciencedirect.com/science/article/pii/S0925443914003779


Thank you for reading, I hope you found this informative. Please share with anybody who may benefit!

Tuesday 5 January 2016

ketogenic zero carb, dairy free pizza

My ketogenic 'zero carb' pizza and chips recipe. It is also dairy free as I substitute butter for ghee and I don't add cheese. Here is a video I made showing how I did it...