Campaigning for improved nutritional support for brain cancer patients

Emails have been sent, more phone calls will be made this week. I am aiming to improve nutritional support for brain cancer patients in this country one step at a time. It is crucial that we do not downplay the importance of this. 

I will have a discussion (preferably over the phone or in person) about nutritional support for brain tumour patients with The Brain Tumour Charity and hopefully also Danone UK (they own Nutricia). 

As an informed cancer patient with a degree in nutrition I am greatly concerned by the poor nutritional advice I received from registered dieticians, in particular the recommendation and prescription of high sugar drinks during treatment. I have a considerable, growing body of evidence that supports the need for radical change and I believe this is possible with small changes over time. The easiest way to start is with these high sugar 'build up' drinks (eg. Fortisip, Ensure, Complan etc.) recommended for brain cancer patients.

Radiation oncologist Colin Champ MD agrees with me. 

http://www.myhealthwire.com/news/diet-nutrition/990

As a simple example, we know that high sugar drinks (like Fortisip-Nutricia, owned by the Danone group) will reduce efficacy of the treatment, especially with dexamethosone (hyperglycemia is common as a response and is a predictor of poorer survival as shown below)

http://www.ncbi.nlm.nih.gov/m/pubmed/24938515/

It is not uncommon for brain cancer patients to develop type 2 diabetes as a response to this steroid treatment over a period of time. It is worth noting the following...

'Excess pro-inflammatory mediators, some of which can cross the blood brain barrier, may trigger neuro inflammation, which subsequently exacerbates neurodegeneration. Insulin and IGF-1 resistance leads to weakening of neuroprotective signalling by these molecules and can contribute to onset of neurodegenerative diseases.' http://www.sciencedirect.com/science/article/pii/S0165572814001751

Additionally, poor glycaemic control will make it harder for patients to control brain tumour related epilepsy which is also not uncommon. 

I have been trying to contact Danone UK via email as they understand metabolic therapy, the link between blood sugar and brain cancer treatment outcomes, and they have the KetoCal range of products to treat children with epilepsy. I wish to discuss the possibility of a nutritional shake similar to KetoCal for all brain cancer patients (to replace the common Fortisip, Ensure, and Complan shakes). 

I hope that we can substitute the fats with MCT oil or powder as is increasingly common in Japan and South Korea to help manage neurological disease as I have discussed in another post. We already know that MCT supplementation can help to manage epilepsy even while on a standard diet (http://www.hindawi.com/journals/crinm/2013/809151/) so with the significant amount of brain cancer patients that have epilepsy I don't see why this should be too much of a problem to implement clinically. 

I can present all of the strong research I have collected and I believe my opinions will carry more weight if I can get support from The Brain Tumour Charity. 

I remain completely convinced that even this small 'build up' shake substitution will be a step forward for improved quality of life and improved treatment outcomes for patients like myself. 

I already take MCT oil from Nutricia to help manage my epilepsy.

Christmas

I realise I haven't written much about Christmas. I had a really lovely day with family and although it was exhausting I enjoyed it very much. The previous Christmas I wasn't feeling at all well so it felt incredible being able to be so much more alert than I used to be. At the same time I am in touch with others in my situation and sadly I hear a lot of upsetting news so Christmas was also a time for somber reflection for me. 

On a positive note I was able to play with my nephew which I couldn't do last year and I had cuddles with my neice. :-)

Exercise with an acquired brain injury- swimming

I think more swimming pools need to be available for anyone who has had any kind of acquired brain injury. Any kind of exercise in the pool is great and I think there needs to be more support for people in my situation and worse. Being in the swimming pool has allowed me to adjust exercises to my needs and I feel as though any support in this area is not well known. It becomes like a little secret for some reason. I'm very excited about going swimming tomorrow for a second consecutive day which is really tough for me. I always make sure I take precautions, take things slowly and rest, but I still feel very fortunate. 

MCT powder and baking- I know nothing and want to learn

I'm working on a cook book with my favourite ketogenic recipes to help others. 

Next week I will be making this low carb bread (4.3g carbs per bun, no grains) and I will be adding my Japanese MCT powder solution to it to see how it bakes. I enjoy experimenting with foods and trying new things. 

This experiment should be interesting, I've been doing more research on the Maillard reaction (I didn't know much about it before, but it's a baking thing!) to see how the MCT powder might react to baking and I think it will be ok. The Japanese manufacturers of the powder suggest that it should be ok but I'm not sure about the UK equivalent (I will compare in January out of interest! I am also wary of going crazy will ground almonds so I'm going to experiment with alternatives, have a play to see what works and what doesn't. I'll do this all after Christmas which I'm finally getting excited about!

http://omicsonline.org/effects-of-medium-chain-triacylglycerols-mct-on-the-maillard-reaction-2157-7110.1000224.pdf

Sleep is important!

Sleep is vital, your brain loves sleep. I am a sleep genius so I know. ;-)

I enjoy learning about sleep, this website is pretty good. We all know it's important but we seem to like to see sleep as an inconvenience rather than a priviledge.

Why not take the Sleep IQ quiz yourself or simply learn more about sleep? I certainly appreciate it much more now. 

http://sleepfoundation.org/quiz/sleep-iq-quiz

http://sleepfoundation.org/article/sleep-topics/healthy-sleep-tips

Japanese MCT powder- how we compare

I finally tried one of my many samples of MCT powder from the Japanese company Nisshin OlliO Group. It was actually more palatable than the oil for me and easy to transport in these little sachets. It looks quite milky when you mix it! It made me think a lot.

Translation of the packet:

Front:

Name: Powdered fat: Ingredients: Medium chain fatty acids, dextrin, modified starch.

Contains: 13 g. Best before: See base.

Storage: Store in a dark place away from moisture or heat.

Back: 

To Eat

- As it melts easily into hot or cold foods, it can be added to a variety of dishes.

- Using one 13g pack at a time, use three packs a day as a guideline.

Nutritional Information

Per pack (13g)

Energy: 100 kcal

Protein: 0 g

Fats: 9.7g

Carbohydrates: 3.1g

Sodium: 3.5 mg

Potassium: 0.16 mg

Phosphorus: 0 mg

Medium chain fatty acids: 9.1g

Here is the patent showing how they make it into a powder- I was curious!

http://www.freepatentsonline.com/8911980.html

Can be used to treat protein energy malnutrition (PEM). 

http://www.ncbi.nlm.nih.gov/pmc/articles/pmid/18231629/

More about what is happening in and around Japan with these products:

http://asia.nikkei.com/Business/Consumers/Nisshin-OilliO-to-push-calorie-boosting-oil-to-Taiwan-s-seniors

My thoughts: 

It is quite striking to me that in Japan and South Korea these types of products are being used mainly in clinical settings and for the elderly while in this country use appears to be primarily for superficial reasons or for the dietary treatment of malabsorption syndromes (primary use of MCT oil since the 1950's). We have started to improve focus in this area but culturally we don't seem to value the research as much. I feel we are moving forward but still at snails pace.

In this country we are still in the stage where nutrition in care homes and in NHS hospitals is still not appropriate and we are only just starting to recognise how useful MCTs can be for treating neurological disorders and diseases. Imagine how fantastic it would be if a cancer patient received these MCT sachets rather than this sugar filled junk that they love to chuck at us!

It wouldn't be typical, for example, for a brain cancer patient with epilepsy or an Alzheimer's patient to buy our equivalent to the powders! When people see this they think about the body more than the brain which I find ironic.

Augmenting Cancer Therapy With Diet: Dr. Colin Champ

Augmenting Cancer Therapy With Diet: Dr. Colin Champ

Diet and cancer- what we know now and what we need to know! This is a superb video and it answers a lot of questions cancer patients typically have regarding this topic.

Research explained by radiation oncologist Dr. Colin Champ and great questions at the end. 

http://youtu.be/ot96y5-D_K0

Cold and flu

I still have a cold (boooo!) but I'm feeling alright now so it's just a mild, snotty irritant that I can cope with. No swimming today but I'm feeling pretty good relatively speaking! :-) 

I have started to drink homemade chicken broth which is great for the immune system and it's something I would like to continue even when I get better. 

I first considered doing this after reading an article by Ben Greenfield. I knew this before but I can be quite lazy. Some good reading here, Ben is a clever guy and is very well qualified to write about this.   

http://www.bengreenfieldfitness.com/2014/09/what-is-bone-broth/

As I say I can be lazy so I followed these instructions for home made broth or stock or whatever you like to call it! 

http://wellnessmama.com/5888/how-to-make-bone-broth/

This is also pretty good, ketogenicdietresource is very useful. 

http://www.ketogenic-diet-resource.com/homemade-chicken-broth.html

Lots of coughing, not sure what to do

I seem to have a cold. Not sure how this will affect me as I haven't been sick for a very long time. My facial paresthesia has come back and I keep coughing, pretty sure the two are linked. I know that having a cold can be a seizure trigger.

I think I need to rest as much as possible and continue to eat well. I've had a rest day today, it's pretty boring but necessary. If I was otherwise healthy I would just plough on through it but I need to be sensible and look after myself. 

I have reflex epilepsy since I had my brain haemorrhage in April 2013 so if I keep things under control I should be ok. 

These are days when I feel like I'm ill

I've been feeling absolutely exhausted today and I've had a few strange sensations in my head so I've been a bit down and a bit moody but in between rests I've been working on my décopatch penguin and it's been quite calming. I'll finish him tomorrow evening.

MCT oil for drug resistant epilepsy- adult patient

I found this interesting. This is why I do what I do.

http://www.hindawi.com/journals/crinm/2013/809151/

5 crucial facts to be aware of if you're on AEDs

1. 'Anticonvulsants can interfere with calcium and vitamin D metabolism. They cause an increased rate of bone turnover, thus affecting bone density. It is recommended that anybody who is taking anticonvulsant medication should also be taking additional vitamin D.'

'Many doctors, however, are not aware of the association between anticonvulsant medication and bone disease and less than 10 percent of neurologist recommend taking calcium and vitamin D to protect against side effects of these drugs.'

From countless studies including:

http://www.sciencedirect.com/science/article/pii/S0920121114001661

And

http://www.sciencedirect.com/science/article/pii/S1059131107002385

2. Switching from branded meds to unbranded does make a difference and can result in breakthrough seizures. The government has recently made branded medications less available to cut costs.

http://www.ncbi.nlm.nih.gov/m/pubmed/21521860/

3. Simply asking your GP for a FREE vitamin D test can definitely help you to control your seizures better. 

http://informahealthcare.com/doi/abs/10.3109/00207454.2013.847836?noFrame=true&journalCode=nes

4.  Hyperglycemia lowers seizure threshold.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC387262/

5. Brain tumour related epilepsy needs special considerations that I don't believe are currently being met. 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3386502/

Getting back to exercise

I have started doing a bit more in the gym which is very cool. I suffered a tremendous amount of fatigue for over a year after my radiotherapy and this has improved significantly recently. I honestly thought it never would and felt very down about it. I work very hard to learn about when to rest and how to control what fatigue I have now. Sustained concentration is still very difficult. There are many exercises I still can't do that put pressure on my head so I think it's a great idea for anyone with an acquired brain injury to build this up very slowly by doing water based exercises using water dumbells. I use the ones pictured below and I have help from a friend who instructs aqua so that I can work at the right intensity. 

I have epilepsy and migraines that can be triggered by exercises so I need to be very careful with what I do. All of my exercises and rest periods are carefully considered and so is my food. I can't do cardio on land and I need to be very careful with my body temperature. The brain is very sensitive to changes in temperature, personally when my body temp goes up I get very dizzy. I swam properly for the first time yesterday which is a huge thing. 

Yesterday, all my troubles seemed so far away

Usually I find that 'recovery' from my cancer treatment about a year ago does not follow a nice linear path to progressive health but recent times have been much better than expected. I have felt this way before and then suffered big setbacks with fatigue, migraines, and increased seizure activity but all that is under control now.

I know that this is a combination of luck, the ketogenic diet, and avoiding personal known migraine and seizure triggers. At the moment I am doing much better than I had ever hoped. I say at the moment because like I say it can all be taken away very quickly so I have to remain cautiously optimistic. With time I have learned what foods I tolerate best.

Yesterday I went to the gym and had a little swim, something I couldn't do just a few months ago. This was a huge deal, I don't push myself and I have to be very careful with exercise selection because I am one of those individuals who can trigger seizures with exercise if not controlled. I am looking to add a supplement called 'ketoforce' to my diet before I go to the gym soon so it is easier to remain in nutritional ketosis and hopefully it will also help my exercise. 

http://www.bestsupps.co.uk/prototype-nutrition-keto-force-480ml

Initially when I started the ketogenic diet I suffered with debilitating fatigue, migraines, increased seizure activity, and what is often called 'keto flu'. This is typically caused by loss of electrolytes, resulting in feeling sluggish with little energy. After introducing more potassium into my diet and regularly taking micronutrient supplements this improved drakatically. I think this can be a common problem because we are typically so used to having a lot of potassium in our diets from foods like potatoes which you can't have on a ketogenic diet. We love potatoes in this country! Here is more info about 'keto flu' and how to prevent it. This is the biggest problem people have when initiating a ketogenic diet for the first time so I believe it is crucial to know about it. 

http://ketodietapp.com/Blog/post/2013/04/16/Keto-flu-and-Sufficient-Intake-of-Electrolytes