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February 2015

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Exercise and brain cancer

Exercise and brain cancer is a very complex subject that I would like to revisit later. I am able to function fairly well now but it was a very long journey with many uncertainties. Walking up and down the hall at home used to be strenuous exercise for me not long ago and stairs was a nightmare. I still can’t believe what I can do now. I continue to be wary of tumour recurrence after being informed by my oncologist it would probably be ‘sudden, unexpected, and will likely leave me with right sided paralysis because of where the tumour was located’ but that is why I’m trying all I can to keep it away! I seem to be doing alright so far, let’s hope that continues.  Ketosis has become an exciting journey and I love how it alleviates and manages a lot of my symptoms when I get it right but exercise can be a challenge (trying to maintain ‘therapeutic ketosis for cancer management). This morning I decided to do a little experiment (my meds often send me into a deep sleep and I wake up ridiculously early)… So here it is, my workout experiment this morning- I performed a series of slow to medium tempo, perfect form, wide grip pull-ups and filmed it. I made sure go all the way up and all the way down following very strict form from a hanging position, my feet never touch the ground. I managed to stabilise blood glucose and ketones throughout the exercise session and pushed myself with the aim of increasing strength long term. Recovery time between sets was 5minutes over 10 sets of 5 repetitions. Cancer patients are advised not to push themselves with exercise because it usually increases blood glucose and reduces blood ketones which I have…

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Surviving Terminal Cancer- finally in the news!

This is finally in the news thanks to the Surviving Terminal Cancer film!  http://www.telegraph.co.uk/lifestyle/wellbeing/healthadvice/11424747/The-professor-who-cured-his-cancer-with-a-cocktail-of-everyday-pills-and-20-years-on-remains-disease-free.html Please sign this petition so we can save more lives like this.  We want to ensure innovative therapies get to brain tumour patients as quickly as possible.  http://epetitions.direct.gov.uk/petitions/74463?dm_t=0,0,0,0,0

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Can a dark skinned black person get brain cancer?

Have you noticed the similarities between skin cancer and brain cancer? The darker a person’s skin, the less likely they are to get both cancers. You are unlikely to see a dark skinned black person with a brain tumour. Both cancers have temozolomide as treatment. I have seen cases where a certain drug that is used primarily for skin cancer has had a beneficial response for brain cancer. The same is true for immunotherapy. Vitamin D3 has profound anticonvulsant properties when you have the correct amount for your body, if you are deficient you do worse. It is a well known fact that many Asians and North Africans are deficient in vitamin D so the earlier fact about skin pigmentation is largely ignored for brain cancer when you look at the stats. Just a few thoughts I’ve had that I wanted to share. Some ‘controversial’ opinions I have. Here is some possible evidence for this:  ‘The risk for primary brain tumors in Caucasians is higher, as much as two-fold with gliomas, than in people of other races.’ http://www.nytimes.com/health/guides/disease/brain-tumor-adults/risk-factors.html Ethnicity – Interestingly, in the US, whites are more prone to gliomas and less prone to meningiomas than blacks. People of northern European descent have double the chance of developing brain tumors than the Japanese. http://www.brain-surgery.com/are-brain-tumors-hereditary/ I have met over a thousand brain cancer patients now and none of them would have been considered ‘black’. I have black African background on my mother’s side (she is mixed race), but upon diagnosis I was severely deficient in vitamin D and followed a low fat diet for years which is obviously not helpful.  Researchers I have discussed the race issue with only mention cultural diets, which is certainly a major factor, but I believe vitamin D which we mainly get from the sun and how we…

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Experiments paying off but feeling guilty for a good day.

I feel terrible writing this after hearing desperately sad news yesterday about a friend but today I have felt phenomenally good, better than even before I had cancer at times. I hope this isn’t a one off and I hope this post doesn’t upset anyone else with a BT. Maybe it can give some people hope and encourage them to keep persevering by taking control. My mind suddenly feels very sharp, my speed of thought has dramatically improved and I feel more alert, being able to maintain concentration and sustain greater clarity of thought throughout the day. I have also been fairly active physically as well as mentally.  This improvement has coincided with a few alterations I made to my diet recently, I didn’t expect this kind of dramatic response if I’m honest. I was drowning in a sea of despair for so long thinking I would never get my life back due to these invisible disabilities but I’m starting to feel more and more like the old me again. I hope I’m not tempting fate but if this carries on I will see it as a huge step forward. 

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Matthew’s Friends Keto Conference from the end of last year

I’ve been thriving on my own version of a restricted ketogenic diet recently and learned a lot from attending this event last year so I thought I would share one of the videos (they have just become available online). 🙂 http://youtu.be/F3VQlWWDtiw The only difficulty I noticed personally when adapting to strict keto is that humans can have many more food intolerances than mice and many brain cancer patients are on anti convulsants so you have to play around with the diet (and often medication!) to find out what works for the individual. It is also easier to control a mouse’s external environment.  I noticed a number of migraine triggers relating to commonly recommended foods on the diet (eg. Cheese, double cream, dark chocolate, ground almonds, even coconut oil!). With most of these foods I am actually quite concerned that they are recommended in the first place but I won’t go into that! Since I eliminated those foods and replaced them with different animal fats from grass fed animals I have been doing exceptionally well (ketones and blood glucose steady at therapeutic levels) and I feel this is the better path with these foods being more nutritionally dense. I also believe that the food replacements were more effective at combatting ‘keto flu’. The foods generally recommended can actually make this phenomenon worse in my opinion. I do think that there should be more mouse studies where anti convulsants are used together with the ketogenic diet because many posess anti tumour properties with different modes of action. The action that Lamotrigine exhibits on glutamate would be interesting to see in a mouse model together with the ketogenic diet. 

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Getting my life back, reducing medication… Again! :-)

I saw my new neurologist early this morning. He has been so impressed with my success on the ketogenic diet that I have just been offered a role as a patient advisor on a ketogenic diet trial for epilepsy in adults.  I am now down to 500mg Keppra twice a day from being on 1,750mg twice a day PLUS 600mg Epilim twice a day 2 years ago thanks to diet change and being stubborn.  I have achieved this on my own fighting against neurologists who wanted me to constantly increase my medication and who didn’t support my ‘risky’ methods. Now I finally have the support I need from a forward thinking neurologist and treatment team. I’m enthusiastic about being given the opportunity to help others, making the ketogenic diet work for them, making it enjoyable, and without it feeling like a chore. I find this incredibly rewarding because I was very scared in the past doing this all by myself with no support and I made a lot of potentially dangerous mistakes along the way.  There will sadly still be some who say this diet doesn’t work for brain tumour related epilepsy. It has certainly worked for me personally. Everyone is different, but I believe the benefits outweigh any potential risks. I believe that any risks are due to people adopting the diet in a way that isn’t suitable for them. The ketogenic diet for brain cancer should be much more than simply attaining a ‘therapeutic’ level of ketosis correlated with relatively low blood sugar readings. I just thought I would share this information. Great things can be achieved if you are proactive and learn from others. I am a student as well as a patient and I’m learning to be more humble, understanding, and open to views that challenge…

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The joy of sleep- rest, epilepsy, and medication

Last night I was asleep by 9pm. I will do the same tonight. Going to sleep late is a type of stress that I don’t think is good for the brain. I used to stay up late and had no sleep routine.  This morning I awoke at 5:30am feeling energised and stres free. I had a nice little workout and a stretch while I was up and felt the best I have in a long time. I also benefit at this time from my medication being weakest at the point as I take it at 9am and 9pm every day. This meant I could exercise and be awake rather than feel the strong effects of the medication. Trying to exercise before taking a sedative is much easier than after, trust me!!  🙂

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Surviving Terminal Cancer

This week I’ve felt fantastic and in many ways I actually feel much healthier than before my cancer diagnosis which is great! My energy levels have increased dramatically and yesterday I was very excited because I had lots of energy. It was also fantastic progress to start resistance training which I couldn’t do before. 🙂 I feel as though every day I’m feeling stronger and more alert and I’m very confident about continuing to reduce this medication. It’s an incredible feeling to be able to do all the things I thought I wouldn’t be able to do again. Yesterday I was invited by The Brain Tumour Charity to watch the premiere of ‘Surviving Terminal Cancer’ in London at BFI Southbank. It was very encouraging to see and hear from long term survivors of the most deadly types of brain cancer and it helped to reaffirm things that I am doing currently to keep this tumour at bay. It was an overwhelming experience (in a good way mostly!) but it’s hard to just write a short synopsis on what I thought because my thoughts are quite complicated. I’m incredibly thankful that The Brain Tumour Charity helped to set up this event and for all the people who were behind the making of the film. I hope to share it with others when it becomes available online.  It must also not be forgotten that Brain Tumour Research are making great strides forward in their work with colleagues in America to advance metabolic therapy and improved surgical techniques in this country in order to improve outcomes. I hope and will try to make sure that BTR will also be able to see this thought provoking, cleverly produced film.

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Migraines and salicylates. Finally an answer to some of my more horrendous symptoms

First day with no headaches! All I did was significantly reduce salicylates in my diet. Now I’ve also managed to reduce Keppra more so if my next scan is positive hopefully in a few months I can get off it completely.  For a long time I thought I was having partial seizures but I was actually having migraine auras which are now largely controlled. Amazing! I’m actually quite angry in a way that I have had to do this all on my own because I know what the potential risks could have been. I was constantly recommended to increase medication and was treated as if I was crazy. I will be laughing at those neurologists who told me this would be impossible. It’s very difficult, but not impossible. I wouldn’t recommend it to anyone else though unless you’re 100% sure you know what you’re doing. The neurologist I see now fully supports me. In my experience most of them don’t treat brain tumour related epilepsy differently and don’t take diet seriously but they should. I’m also showing that you don’t need coconut oil or supplements to be in nutritional ketosis.

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