Thursday, 2 February 2017

Jan 01/2017 scan - surgery now necessary

 Hey guys, life is okay atm, i have fairly frequent head symptoms, (dizzyness, headaches etc) but a lack of seizures so in balance its all good. my life is still plodding along as close to normal as i can keep which was the plan all along. anyway, i had a scan on 01/01/17 in my home department in wales and recently got the results in London from my neurologist. i could have the results a lot sooner considering i had the scans on a disc a month ago. but i didn't want to look at them until i had too.

so the scan results show more growth again. i'll throw the comparisons down here like last time because i found that helpful. 6 months comparison from the sagittal and 2/3 years on the axial to show you. not sure if the one the right is 2015 or 14.

January T2 axial scans from 2017 on left too 2014/15 on right.

As you can see the anterior portion in the frontal lobe has grown significantly this year, despite its appearance the posterior growth is more worrying as this is the growth thats into the motor cortex and is more likely unoperable and symptomatically more damage i suppose. below is a coronal slice of this anterior tumour so you can picture just how deep its penetrating now.
Coronal of Anterior Portion

T2 sagital comparison showing 6 month progession, Newer scan on the right this time. 
Last time i left the blog saying i can chose when to have elective surgery (which clearly, i chickened out of), my neurologist this time is concerned with its rate of growth and surgery is highly recommended soon, rather than at my leisure like last time. Rationalizing this has been difficult but with my prognosis and then the genetics suggesting i should fall towards the lower end of the survival curve for LG-Astrocytomas, this isn't particularly surprising at all. But time just goes so fast when your working to a deadline. its been 3 and a half years now since diagnosis. this time 3 years ago i was still in my ward bed post surgery having my catheter and head drain painfully removed, 2 things im not looking forward to going through again this year, alongside the side effects i had from the anesthesia and opiates.

I feel like i should talk a bit about my lack of dedication to the cause now. When i was diagnosed and subsequently after surgery i did so much research into how best to help myself and prolong my lifespan. After all this concluding that a low protein and more specifically Methionine (vegan) and calorie restrictive diet to inhibit growth hormones, blood sugar and accessible carbon substrates for growth of the tumour and therefore potentially inhibiting growth of the tumour itself (in theory). Now this along with a variety of expensive and for the most part relatively well scientifically studied supplements i maintained for probably 12 months post surgery in which no detectable growth occurred (although this is the least likely period for growth to appear). the subsequent 6 months i rebuilt my strength with weightlifting and raised my protein intake and calories a bit whilst remaining vegan, this time growth occured, although i wasnt aware of it atm, having not seen the scans myself and being told 'slight white matter enhancement' which can mean anything/nothing to someone who cant see the scans. at this point in my job started which required my IBS to be good for perfect attendance. This demanded a total change in my diet. out with the quantities of veggies and beans/lentils to remove large quantities of healthful fibre from diet and in with bread and rice and less helpful foods - growth occured.

following this for some reason i became so good at living life and not thinking about the fact i had a tumour growing in my brain that i succumbed to the pressure of enjoying life (meals out were a pain, and food choices in general on such a restrictive diet. my diet and supplementation completely slipped. i ate junk food, and fish (but not meat) and stopped calorie and protein restricting. i put on 2 of the 4 stone i lost post steroid treatment. if im giving healthy tissues enough energy to grow then my tumour was bound to grow wasnt it? i have to rebuke myself. speeding up growth with this reckless and needless diet is frustrating for myself. i was doing well for a year, but deciding not to live in the shadow of a tumour and just enjoying myself meant letting it back into my life all over again. i'm unsure as to how anyone who has gone down this route like me finds the balance between living life in ignorant bliss and living it being fearfully cautious.

So im going back to my original plan of attack, or defense. after re-reading literature about methionine i discovered that fish actually had a significantly higher methionine to other amino acid ration than anything else. i thought (assumed) fish would be less damaging of the meats. anyway, i'll report back when i have a date to see my surgeon again. at least im assuming it'll be the same surgeon.

Thursday, 8 September 2016

September 2016 Update

Hi guys, its been an awful long time, sorry. Things have been changing i just find it hard to keep putting them up here all the time. or respond to most peoples messages and texts as i'm sure a lot of you have noticed. For some reason one of the effects that has come out of this is the irrational dread of messaging people and responding to messages and for that im sorry. i'm sure i'll get over it at some point. (edit: after a number of messages from people apologising for messaging me after reading this i  think i should state that is meant to be an apology from me as to why it takes so long to get back to you. not a hint to stop messaging me! kk thankyou all who care :)

As for an update, i had a scan a few months ago, cant quite remember when, probably april. although this time i had the scan in my home department where i work in wales which was really nice. obviously i had to go to london for the results and to talk to my neuro-oncologist. it did show growth unfortunately. There is now three areas of growth surrounding the scar tissue from surgery, (anterior, superior and posteriorly of the cavity into the motor cortex. The anterior and was present was in the scan prior to my latest scan although it has grown quite a bit and the other two areas have come about significantly since the last scan although were present to small degrees just not noted upon at the time.







after trying to explain my scan to people with the image infront of them over the phone i realise it's hard to explain whats what here so im going to provide an edited scan too. red areas are areas of growth and in green is the scar tissue cavity from surgery.






For reference im going to provide the scan previous although not from the same angle, sorry, i dont have access to all of it right now. anyway in these you can see the bright white cavity and the anterior portion of the tumour infront of it.




My specialist has agreed that at this stage i do need surgery again, however its not an emergency so it will be elective surgery, which basically means, surgery is available to me when i ask for it and then when the team is ready to operate once i've decided i'm ready. The problem with that is, i dont have the courage to go through with it yet.

Brain surgery was the hardest thing i've ever done, and to be doing it all over again two years later is a bit too daunting to for me to volunteer for right now. despite the fact that i am having symtpoms again, (although coming in phases where they come for a week or two and disappear again). The constant symptoms being persistent tiredness all of the time and dizzyness when i get too overworked or stressed. which happens far easier than i'd like. The main problem is surgery isnt necessarily a fix of these symptoms. infact much of the symtpoms i have were brought on by surgery in the first place. as major brain trauma and surgery causes chronic fatigue in patients.

yes surgery will remove the pressure building up in my brain (at the expense of the risks) but if it would fix the problems which effect my day to day quality of life is unlikely. and fortunately for me, my quality of life for the most part is quite good, i feel unwell quite a lot, but i have a very flexible boss who allows me to get my contracted working hours in through flexibility of those hours. anyway i dont have the energy for proof reading this post tonight, so i hope its readable. hope your all well.


p.s. although i don't comment as much anymore, i do still continue to read my fellow brain tumour bloggers blogs all the time.

Tuesday, 26 January 2016

Relapse

So i travelled to London on a day off from work today to see my neuro-oncologist and have my scan with my mum and matt. The 10% of the original tumour that was left in next to my corpus callosum has been active and growing again for the past year apparently, not such good news i'm afraid.


on left: 26/01/2016 scan               on right: scan from beginning of 2015

scan with tumours highlighted, because lets be honest the scar tissue from surgery looks so similar


Scan from pre surgery for a bit of perspective.


The post contrast scan wasn't enhanced so its likely still a grade 2, which is nice considering the genetics, and, its not a surprise its back already and to be honest i'm just glad its not a higher grade Although of course, I'm very disappointed and frightened that it has started growing again. Anyway, he said the three choices we have are 1. watch and wait (recommended as i dont have bad symptoms currently, 2. have surgery again (invasive and risky) or 3. have radiotherapy (side effects, probably not effective).

As im happy with life as it as atm (minus the obvious health issues) i think i will be waiting on the next scan and kicking myself for letting my own protocols slip since i started work. its so hard to be on a low calorie/ nutrient dense diet when you have IBS and work a demanding job. and following the supplement protocol i laid out was too expensive and frankly nauseating. although i must try harder on all fronts if i dont want it to keep growing at this rate. or at least know i've tried my best.


Sunday, 20 September 2015

Personality Issues

Sorry its been such a long time since my last post. with starting work and everything else i haven't had much time and not a lot to talk about. I've been enjoying work quite a lot and everyone who works there is great but it's come with a lot of added stress to my life. and i've been upsetting people more often than i used to. i say things now without thinking them through first and have lost a lot of the social skills i used to have. things don't come easy any more and i'm quite paranoid and insecure about my ability to interact with people normally now. people, who've known me for a long time and knew me before the tumour can understand a bit more because they know i didnt used to be like this, but for all the new people i meet at work, this is the only me they know and its quite worrying.

i don't really like myself any more. i just hope it doesnt get any worse and its just a phase caused by all the changes and stress in my life. i'm paranoid because last time i had a big personality change it was because i had a massive tumour growing in my head, i know this is a common side effect of both the tumour and the drugs i'm on though. anyway, first pay check tomorrow :) i'm enjoying my life, so thats what should matter at the moment.

relevant reading: http://www.thebraintumourcharity.org/Resources/SDBTT/the-info/general/Personality%20changes%20v.1.pdf

Saturday, 20 June 2015

Transitioning + Scan Results

So it's been a while due to university finals and my dissertation etc. But i can finally say, i passed all my exams and got a 2:1 degree and will soon have a licence to practice as radiographer. I managed to get the job i wanted in royal glamorgan hospital and i am in the process of renting an apartment in a converted chapel in llantrisant. there is lots of paperwork and stuff to go through for both the job and the apartment so i'm not sure when i'll start work yet.

I had a scan in cornwall this month, and the results suggested changes in the white matter of the brain but not tumour growth. the scans have been sent up to specialists in London to have a look at and maybe establish a better idea of what is going on. I've been really stressed lately because of exams and life in general really and symptoms have been very present frequently.

I went on holiday recently to northern italy for a family wedding which was really nice and i got to strike off visiting venice from my bucket list too, so i'll put a couple of pictures in to finish this blog. anyway, i hope this blog finds you all well. Heres to a new start in a new place. i'll miss university a lot, but as 7 years as a student its probably about time i became an adult.








Friday, 24 April 2015

Scan Delay

Hey guys, I was supposed to have a scan on the 21st but the MRI department had a power cut so it didn't happen. we got off the train at bristol and are aiming to rearrange the scan for after exams. I've also got a job interview after exams too. so busy times ahead. everything is going okay, i built myself up for the stress of a scan and to not have it was extremely disappointing because i've got to do that all over again now.

I had my 25th birthday since my last post, which was nice! a study came out recently linking glioma growth to brain usage, which worried me a bit as i am currently writing my dissertation and studying for exams. i suppose with the location that my tumour is in it would be physical activity that pumps blood to my tumour. anyway, using your brain killing you faster is a depressing thought for sure.

Hope you are all well :)


Go Karting:)

http://www.npr.org/blogs/health/2015/04/23/401723235/thoughts-can-fuel-some-deadly-brain-cancers?utm_source=facebook.com&utm_medium=social&utm_campaign=npr&utm_term=nprnews&utm_content=20150423

Tuesday, 17 March 2015

Carmarthen, Coursework and Charity

hello all, time for a new blog I think. I've only got two months left of what will be five years at cardiff university, which is extremely sad because i love it here. I've had some coursework deadlines and the last of my clinical placements in the past two months. Not sure how the the coursework went as we won't be getting results for a little while yet but my last clinical block was great. The staff and my clinical lecturer were awesome and got me to where i needed to be in time for my clinical assessments in which i got firsts. So things have been going surprisingly well so far considering how worried i was about returning to uni. The only downside to Carmarthen was the hospital accommodation which was a bit grim, but my coursemate made it easily survivable and i spent most weekends in swansea with Rene and her family so time went by really fast. As for future work I've got my research dissertation deadline and exams coming up in May.

I've always enjoyed giving money to charity but since last year getting money from Nevill Hall to go on an amazing holiday to see the northern lights i've been especially vigilant with it as i like 'paying it forward', I love opportunities to give but recently I've been getting back tenfold what i give. because, this time Carmarthen gave me another huge sum of money to go on another trip of a lifetime. Would you believe it? The generosity of people who don't know me that well can be quite amazing. I have no idea how i can thank them properly, it's not a big department to be taking such big amounts of money from their own pockets. Weird how my misfortunes have opened up opportunities for me to do things i wouldn't have been ale to do otherwise due to the kindness of others. Its hard to show how grateful i really am. This money is supposed to a trip to Peru and Machu Picchu which is awesome. I need to get into training to be able to climb it and hope my brain handles the altitude. This trip is a bit beyond Rene's comfort zone so i'll be recruiting somebody else.

My life is actually pretty great isn't it. Ticking my bucked list off faster than i expected because i'm also going to venice after my exams for my cousins wedding. so may and june will be ticking off venice and ticking off graduating hopefully! I'm reaching a quarter-century next month which is some pretty good going. it also means 18 months since diagnosis which means another scan in london unfortunately. Its just a couple weeks before my exams which means a lot of distraction from my finals and a lot of stress. its really hard to focus on anything but the scan as its coming up, i feel like after a scan you get four or so months of stress free living followed by 2 months of building anxiety, evidenced this time by a panic attack two weeks ago, which wasn't about the scan but shows the stress is building up already. Feeling pretty good at the moment, ready for the last haul at uni. i also need to find a job sometime soon as most of my classmates seem to have got one lined up for graduation already.

A lot seems to be happening in the brain tumour world at the moment, with a documentary that came  out about a private company offering individual genetic testing to combine the correct cocktails of drugs to get the best results and building up a data bank of tumour types and drug combos which is fairly exciting. Also a study showing that a tetanus vaccination combined with immunotherapy had some pretty great results. None of it in the UK though. perhaps if it came back soon i'd be sorely tempted to leave the UK to get some immunotherapy. it seems very promising. Well done if you made it this far! till next time :)

Sunday, 8 February 2015

PTEN in Low Grade Gliomas

Not sure why my neurologist specialising in LGG's had such trouble finding studies on this topic. there are quite a few studies, here is just another.  i came by this study by mistake, i certainly haven't been looking for more evidence of a shorter survival for me. it just appears every now and then when i'm online. i was actually studying mTOR pathways at the time. i should be studying for my clinical assessment this month but i've been having really bad headaches so i got drawn back into the whole cancer world again unfortunately. i wanted to be a statistical outlier but my genetics suggest that if i'm going to be an outlier then it would be at the wrong end of the graph.


''Correlation between molecular markers was determined using the mann-whitney U and spearman rank correlation tests. eight of the 26 patients with methylated PTEN died during the study as compared to the 1 of 19 without methylation. There was a trend towards statistical significance with PTEN methylated patients have decreased survival (P=0.128)''

http://www.ncbi.nlm.nih.gov/pubmed/19705067

basically PTEN suppresses the mTOR pathway which is responsible for growth etc. when you lose it (like me) mTOR is less suppressed causing more growth and quicker transformation into glioblastomas leading to a decreased survival. the natural way to reduce mTOR is a low protein diet. mine is already low protein but maybe i should lower it even more and live off fruit or something. maybe when it reoccurs i'll decide something more extreme like that. it feels like i'm climbing a very uphill battle sometimes.

Monday, 19 January 2015

Methionine Restriction for Cancer / Tumours

Catch Up

After Norway I had a very indulgent Christmas with lots of family. Which was amazing but I let my diet slip quite massively. I remained vegan but ignored protein and calorie restriction. This theme held up for probably 7 weeks into the new year and I ended up putting on over half a stone. Which isn’t the direction I’m supposed to be heading in at all. I usually find when I’ve lost all motivation it’s because I haven’t read the research in a while and my focus turns onto my everyday life and not what I’m eating when really I need to be able to do both. Anyway I delved back into all the research and I’m leaning towards low methionine diets still. Through this I discovered cronometer which I will explain later.
Family Gathering
I'm back at university again, mostly coursework at the moment until February when i go back to clinical for my final clinical assessment. And people have started to get jobs already so I need to start applying soon which involves making a continued professional development folder and CV etc. so lots of work and some big decisions going on. the whole brain tumour world has sort of melted away to the back of my mind so i haven't blogged much, but i am happy enough not to be thinking about it. a few clonic jerks in the middle of the night waking me up here and there and some headaches. but nothing i'm not used too so all calm and boring really when it comes to updates. Some of the bloggers i follow and interacted with turned out to be fakes so that was a shame and puts me off interacting with other blogs a bit.

Methionine Restriction

I may have discussed this briefly before and its not particularly exciting for people who arent looking for that anti-cancer diet but i'm going to include it for the few who are looking for that, I’m going to keep it brief again. Methionine is an amino acid in foods containing protein (all food). But more and more research is being performed regarding this amino acid. A lot of it to do with life extension in healthy mammals. Although they can’t 100% point towards why methionine has this effect it may be to do with protein synthesis and igf-1 in the same way as calorie restriction works. And they believe the reason calorie restriction works is 50% simply due to the natural restriction in methionine this would incur. Anyway, studies show it has a beneficial effect with cancer too. Both on its own and in partnership with regular treatment. Most trials are done with treatment presumably because it would be unethical to take one group off of treatment to see how they do on a dietary approach. Lots of research out there but it only takes a quick search to find it so i won't link it all up here.

Methionine is found in all protein sources. Protein sources are normally judged by their balance of amino acids, so protein sources deemed high quality will have a good distribution of all amino acids, these include meats and fish and dairy and therefore are recommended by traditional nutritional recommendations. These are often pure protein sources or the majority of that food is protein so you can attain large amounts of methionine from these products. Vegan foods are lower in protein because they always come with carbohydrates, fats and fibre attached to it meaning they are natural lower in methionine. 

Some vegan sources also lack good amounts of methionine in comparison to the other amino acids they have, therefore making them low quality protein. On the other hand other vegan foods are high in methionine and low in other amino acids also making them low quality protein. If you combine beans which are low in methionine but higher in other amino acids with grains which are high in methionine they complement each other making a well-balanced protein source. Albeit, still lower in methionine and total protein than meats would be.

So when I ate lots of food over Christmas it tended to be grains such as bread and cereals which are all in the higher methionine category for vegan foods. Still lower than meat but not ideal for what I’m trying to achieve. So the game-plan for now is to drastically reduce the amount of grain and nut products I eat and up the lower methionine vegan foods such as lentils and beans. I’m not going to completely remove them because my diet is already so extremely restrictive.

Cronometer
To help with this I started using cronometer this week which is an internet site that monitors your macro and micronutrients for you including your amino acid profile for the day. You just type in everything you had that day and it gives you all the information. 

So here for example is my average daily amino acid breakdown for this week by percentage of daily recommended minimum. the moment i add grains twice daily to my weekly diet that all balances back out again. i have kept a food diary on and off for years and when i typed in an average day for me from just before diagnosis i had 5.0g of methionine instead of 0.5g for example. so the difference is quite huge when i'm being really strict like i have been this week.

the biggest problem is the diet that helps people with IBS (fodmap diet) is almost completely opposite to the diet that helps with tumours/cancer. although IBS affects my life more day to day it is the lesser of two evils so i'm going down the anti-cancer diet for now.


Monday, 15 December 2014

Norway + Arctic Circle

Ørnes


Ålesund


Aquarium






Had the wrong lens, moving boat, moving lightsource, completely missed the photograph.

Dog Sledding


Northern Lights in Troms


Tromsø




Honningsvåg



For those who have been following since last october, you will know that i made a post about my bucket list. one of those items was to see the northern lights. The radiology department in abergavenny that I was working at raised a lot of money for me to do this. after a lot of research i decided the best way to see the northern lights was to go to northern norway in winter and decided upon catching a boat up the coast from Bergen and take in all the sights that coastal norway has to offer. My girlfriend and parents also wanted to come, so they bought tickets too. we boarded the MS Polarlys in Bergen which is basically a posh ferry that is used as an important transportation system of goods and people for coastal norway. we travelled from Bergen in the South to the Lofoten Islands in the Artic Circle in the first four days and the remainder of the week was spent in the arctic circle travelling over the northern cape of norway towards the russian border at Kirkenes.

We stopped at many towns along the way and took part in a few excursions such as sight seeing and dog sledding, and of course dog sledding. Also i got to see the northern lights many times in the arctic circle although my photography of those lights left a lot to be desired. it would have been impossible to demonstrate how spectacular the full dancing lights would be on a photograph anyway. It was a trip of a lifetime and we all loved it so i need to say a huge thankyou to everybody at nevill hall radiology department for getting me there :)

I've left a few of the highlights in photos for you to see. i'm quite well at the moment, no brain issues on holiday so all is well! we broke down on the way home and didnt get home till 5am, and renes bags went missing somewhere in norway. but other than that we had a fantastic time! hope you are all well. Ben

Sunday, 23 November 2014

Symptoms, Galectin-1, Cannabis

So recently i've had some new symptoms. every now and then i have this feeling like i'm in a lift thats falling very fast. it only lasts  a second or two but it nearly knocks me over when it happens. also i've noticed my peripheral vision is completely blurred.

while i'm here there is a couple of recent research breaks in the past couple of months for those who have brain tumours and are interested. studies have shown galectin-1 a molecule that surrounds gliomas is what makes them able to hide from the bodies immune system. which is obviously a bad thing. but if they find a drug to target galectin-1 in the future, that would benefit us greatly.

also cannabis has been proven to have strong treatment effects on brain tumours! all the conspiracy theorists who have been saying cannabis treats cancer for years and that the pharmaceutical industry have been repressing it were right to some extent. it seems to do quite a good job. obviously its not being particularly repressed as they are doing trials with it now though.

Thursday, 23 October 2014

Scan Results

the residual tumour mass is a large C shape occupying the superior, inferior and lateral borders of the cavity with most of the mass at the superior and inferior poles. no growth to be seen anywhere, slight shrinkage of the inferior mass even! no uptake of contrast on the gadolinium scans so there isn't an abnormal blood flow going to the tumour. the right lateral ventricle that was once squashed to non existence by the tumour is now larger than the left because the shrinkage of the cavity has pulled on it, so their is visual evidence of my brain changing shape which explains the symptoms when i get them. it was a long day travelling from swansea to london and back with rene. but i got to see matt in london and it was good results so it was a good day really. i had a bit of a seizure on wednesday night unfortunately and i took extra keppra to get through the night which has left me zonked today. but its all good. i can concentrate on uni and norway now :)

Saturday, 18 October 2014

University, pre-scan

I'm still currently on placement in carmarthen (west wales). its going well so far and i am enjoying it. it has had some challenges, frequent headaches and lots of fatigue but its been managed okay with pain killers and naps after work. last week didn't go so well because of the stress and worry of the upcoming scans on tuesday i haven't been sleeping so well and because of that, the seizure activity has increased also. the level of anxiety regarding next week is making me feel physically sick. a feeling every one of you who has check-up scans post treatment will know all about. anyway, i hope everyone is doing well, and i'll check in again after tuesday.

Tuesday, 23 September 2014

One year anniversary: Back to University

just a quick update, I’m back at university for my final year of radiography, which starts in placement exactly a year after being diagnosed. So I’m back in hospital working this time which is much nicer. As expected fatigue is quite high, but its manageable at the moment. Good to be back in a normal life. Only One or two people here know about the tumour so I’m treated normally, so it doesn’t come up in discussion, so I pretty much forget all about it, the supplements and meds have become such a routine now that I don’t really think about why I am taking them so it rarely crosses my mind apart from when I get headaches. All in all, I’m very happy and fortunate to go back to an almost normal life for now.

next scan on the 21st October.

Wednesday, 13 August 2014

August Update – Returning to uni and more nutrition research

Return to Wales

As the title infers, I shall be returning to university next month for what will hopefully be my final year in radiography. Until this month it’s been far to the back of my mind. However, every night this month I have been having nightmares involving returning to university, so subconsciously I must be quite worried about it. Although, it makes a nice break from nightmares about the tumour growing again.

Because I’m going into another new university year group (for the fourth time in my life) and everybody I know from Cardiff has now moved on elsewhere, I only know a few people in the city now. So I decided to return to university halls to make things simple with going back instead of finding a room etc. However, I will not be in Cardiff for the first 6 weeks of university because the third years are returning straight into clinical placement. I don’t know where I will be yet. Unfortunately it feels like I have forgotten everything I should know, and trying to relearn it all is proving harder than it was the first time. I also have my dissertation to do which is difficult because it requires a hospital to allow me access to their patient records and do an audit, in which I had a hard time trying to accomplish last year.

Although it’s going to be a big step going back to the real world again after having a year out for treatment and recovery I am looking forward to it really even if my dreams state otherwise and my self-confidence is a lot lower than it once was. It also means I will be a lot closer to my girlfriend and other friends in wales. And it’s a shorter distance to London for my scans.

Oddly enough the day I return to Wales will be exactly 1 year since the day I was diagnosed.

More Diet Research

Upon reading a book about nutrition I came across some readings concerned with methionine that reminded me about the research another brain tumour blogger passed on to me about glutamine. I went back over the research and found loads of information about methionine in both the book and the research studies. The slowing down cancer diets and slowing down aging in general diets have all the same things in common, obviously because they are trying to accomplish the same thing but over different time spans. So reading a book by a scientist who focuses on extending the lives of monkeys by 50% using dietary protocols often have applicable principles to anti-tumour diets.

anyway, methionine is an amino acid involved in protein synthesis and as such is essential to survival, but having less of it seems to slow down protein synthesis and extend lifespans in both animals and probably brain tumour patients (according to the limited research in the area I’ve read).


As with all amino acids it’s found in very high amounts in animal proteins such as meat, eggs and milk. So veganism is a prerequisite to a low-methionine diet. But there are certain very high sources of methionine in the plant kingdom too. Certain nuts and seeds are extremely high in it. Although that is relative to other amino acids, their total protein is still low, so methionine is still low in comparison to meat. On the upside certain plant sources are high in protein but low in methionine such as lentils and certain beans. Having a low methionine diet will obviously mean low protein synthesis all over the body, not just the tumour. So getting stronger in the gym will be a fairly futile endeavour. Although I will continue doing it for the insulin sensitivity reasons. As we are on the topic of diet, it’s been almost 7 months since surgery now and because of the restricted diet I am on, I have now lost 4 stone since the day I weighed myself when I first got home from surgery so things are going in the right direction. I’ve lost all of the steroid weight now for sure and have moved into the weight I gained in the year leading up to diagnosis.

To finish, nothing much is happening for me this month, other than preparing for university.  I’m going to wales in a couple of weeks for a friend’s wedding which I am looking forward too because I haven’t seen them since the week I was diagnosed which shall be good! Anyway, hope you’re all well.

Friday, 18 July 2014

July Update

a few things to discuss this month, some good, some not so good.

I went back up to London this week to meet a neurologist who specialises in low grade gliomas. it was 10 hours on a train for a 10-15 minute meeting. thats not anybodies fault its just what we deal with our appointments because we chose london. my coccyx is still sore today from all that sitting.

so the discussion was to be about my genetics primarily but everything else came up in discussion too. he pointed out the area in my cavity in which he believes all the residual tumour is left. i knew that there would be some, but actually looking at it still there in my brain made a difference in my mind as to how real it all still is, because in between appointments i don't really think about brain cancer at all. i did all the research as to what i want to do about it as far as lifestyle changes goes and i have been doing it long enough now that they have become habit without really thinking about why i'm doing them.

we also talked about genetics, regarding my 10q deletion. or the PTEN gene as its more commonly known. he said loss of heterozygosity on the 10q gene is normally something associated with grade 4 brain tumours. there is little research done on 10q in low grade gliomas but that which has been done indicates a survival decrease over the norm. however, there isn't enough studies done for him to say that's the case for certain.

the last thing we discussed was the seizures i've been having which concluded with me increasing my keppra to 1500mg per day rather than 750mg, although i will increase the dose slowly over time.

Now onto the good news, thanks to Nevill Hall Radiology department i have booked a trip the to Arctic Circle this christmas :) we are going up the norweigan coast by boat up into the arctic circle, which i am very excited about, hopefully we will see the northern lights, but if not it will still be a very nice trip.

Hope you're all well.

Tuesday, 24 June 2014

Clean Scan

so yesterday was my MRI scan and we got the results back today. no new growth, the tumour cavity still looks a mess and has changed shape a bit which is the likely cause of the seizures. so all good news their. the anxiety of scan and results days takes it toll. i am exhausted now.

in weirder news, i got a message on google + from a guy in america saying some lady was using my scans to gain attention and money. it had gone so far that even william shatner had retweeted her. i'm not really sure of the extent to all of this, and whether she really was sick or not. but its weird all the same. she had shaved her hair and borrowed pictures of chemo drugs from other blogs aswell. i've scrubbed out her name


Tuesday, 17 June 2014

Not such easy sailing.


sorry about my absence from the blogging world for the past two months.  Stuff has been happening but I just never got round to writing it down and now I guess I’ve forgotten most of it. I’ve been keeping up the general plan of action but it hasn’t gone as smoothly as I’d have liked. I’ve had a few minor seizures and a lot of myoclonic jerks and headaches in the past few weeks and similar feelings in my left leg to what I had pre-surgery. Obviously I’ve found this both disappointing and quite worrying. But reading other blogs has made me aware that symptoms’ coming back doesn’t necessarily mean the tumour has come back, although sometimes it does. Anyway, I have a scan on Monday to see what’s going on inside my brain, hopefully it’s just changing shape again.


Also a fellow astrocytoma blogger made a post about studies showing that glutamine being the primary carbon source for astrocytoma growth. Glutamine is the primary amino acid in most foods containing protein. I was on the right track going vegan because obviously meat and dairy seem to have the highest glutamine contents. However there are plenty of vegan foods with high amounts of glutamine too. So I’ve had to make a few more changes to my diet. Speaking of diets, I think the steroid weight has finally come off. I’ve lost 47lbs since surgery and going vegan so I feel like me again.

On better news, since my last post I’ve left my comfort zone a few times and got out and about up and down the country on my own. I’ve been to visit rene in Swansea a few times and went to my old year groups graduation ball in Cardiff to say bye to everybody last week and went a on a short holiday to North Cornwall with some friends. Getting back to a normal way of life again (if only for short periods) has been great for my mood and confidence with adapting to my new way of life. which is important if i go back to university in September.

also, I’d like to thank my local church and everyone else involved who did a concert fundraiser for me and my family. A lot of money was raised in which we can use for travel and stuff J

anyway, I’ll get back on Tuesday for an update on that MRI scan.

Wednesday, 23 April 2014

April Update

I felt bad leaving my blog on such a depressing note since my mood and outlook has been better for a good week now. Just like with diagnosis, it took a few days to accept the new prognosis, and then you get over it and move on with life. I’m fairly symptom free at the moment so its easy to forget you have any sort of life threatening disease which does wonders for my mood. I’ve had a few  headaches, but the anxiety I used to have is almost non-existent so it doesn’t worry me. I know the headaches are just the brain changing shape and not new growth. my nerves are knitting themselves back together on my scalp, and i get a feeling of running water down my face everytime this happens.

Birthday

I had my 24th birthday this week which was nice. Rene was down and I went out for a meal with family and friends and jack managed to get the chef to make me a vegan meal. So that was nice. I got a lot of vegan chocolate for my birthday. And I ate over half a kilo of it in the 3days following. I managed to work it off and have continued losing weight though which is nice. Although the weight loss has slowed down a lot this month. I lost a stone last month, only 4lbs so far this month though. Which is because I’ve been eating more bread and cereal. I haven’t skipped off being vegan, but I definitely lost my way a bit with the ‘only nutritious food diet’ I need to get more disciplined again.

Oncologist

I had a meeting with my oncologist this week for the first time since surgery. He seemed very pleased with everything. He didn’t know about the 10q thing which was the gene that got me so depressed in the last blog so he didn’t have much to say about that. But he was really pleased with the resection and glad that we managed to get a place at London.

Other than that life isn’t particularly interesting at the moment. Most of the day im either researching cancer stuff such as nutrition/supplements and others which I’ll cover in another blog one day, watching tv to relax or in the gym. Today I did 3 hours on the treadmill because my weightloss has slipped a bit recently.


I read a great book that I thought I would include in this blog because I found it so helpful. It’s called radical remissions and is about following up on cancer patients and those that survived for reasons beyond western medicine and what these people have in common. If you have cancer I’d really recommend it as a read. Very full of positives knowing there is things out there you can do to help you live longer if not be completely cured. There is a lot of extremely brave people out there who turn down western medicine in order to follow a path they believe to be better. i know i couldnt do it. it obviously doesnt always work (e.g. steve jobs) but on other occasions people get a complete healing rather than have their lives slightly prolonged by treatments with awful side effects. I feel very fortunate to be in the position where no-one wants to give me chemo/radiation because of my age so i can try all the natural approaches first before it returns and i must begin western medicine. so i have the opportunity to try the natural way first without taking the risk of rejecting western medicine.

Thursday, 3 April 2014

Genetics and Scan

Scan
I was expecting nice clean lines and a cavity, maybe even no hole at all. All of the pot resection scans I’ve seen are removal of outlying tumours near or on the surface, they always seem to be very neat and tidy. Mine was nothing like that. Hopefully one day I can get a copy to show. It hasn’t been reported on yet so I don’t know the official verdict but it looked a mess to me. The cavity held different density fluids and there were some areas of uptake that were hopefully scar tissue rather than residual tumour. But I wouldn’t be able to tell the difference. They might not either. If it doesn’t grow it means its just scar tissue, if it does it’s tumour. I’ll have to update when I have an official report

Genetics

There are a couple important genetic factors to look for that affect prognosis.

Positive for IDH1 – most Gliomas that are grade 2-3 contain this gene, it is beneficial to survival to have it as not having it people tend to be classed as pre-glioblastoma. However in numerous studies I’ve read IDH mutation didn’t show survival benefits until treatment was present, so although I’m glad I’m not what would be termed pre-glioblastoma, I’m not sure what benefits I’ll see from this.

'IDH1 mutations are associated with a Janus headlike phenomenon; unfavorable prognostic influence on PFS turns into favorable impact on postrecurrence survival. A similar pattern of influence might exist for MGMT methylation. Cancer 2011;. © 2011 American Cancer Society.'


Negative for 1p19q co-deletion
This is the one I really wanted going into the meeting as it shows a longer survival curve to have it.
In a study published in clinical pathology journal last year, it is stated that it indicates longer survival and differentiates between oligo tumour from astrocytomas and ‘oligo mimickers’ and is probably the reason for oligos having improved survival over astrocytomas. However even 20% of oligos don’t have this gene deletion. In one study the difference in survival between grade 3 oligos with/without this gene deletion was 2 years and 12 years respectively, so a 6-fold increase in survival.

Not having this co-deletion means I think i have to accept that having the word oligo in front of my astrocytoma doesn’t really mean much in terms of prognosis. At least in my understanding that is limited to a few recent studies.

LOH in 10q
Loss of heterzygosity in 10q is normally associated with high grade tumours.

This is an extract from neuro-oncology 2010

The loss of chromosomes 1p–19q is the only prognostic molecular alteration identified in low-grade gliomas (LGGs) to date. Search for loss of heterozygosity (LOH) on chromosomes 1p, 9p, 10q, and 19q was performed in a series of 231 LGGs. Loss of chromosomes 1p–19q was strongly correlated with prolonged progression-free survival (PFS) and overall survival (OS) in univariate and multivariate analyses. LOH on 9p and 10q were associated with shortened PFS (P = .01 and .03, respectively) on univariate analysis. On multivariate analysis, LOH on 9p remained significant for PFS (P = .05), whereas LOH on 10q had a significant effect on OS (P = .02). Search for LOH 9p and 10q appears to be a useful complement to analysis of chromosomes 1p–19q in LGGs.

So loss of heterozygosity is good is great for 1p and 19q which didn’t happen for me
Loss of heterozygosity in 10q is bad a predictor of short survival time, my results say I have lost 10q.

Summary

I went into genetics full of hope. Believing I’d have one of the lucky genetic tumours, studies I’ve read suggested I had at least a 50% chance of this. But unless I’ve extremely misunderstood everything, it’s one of the worst. I’ve gone weak at the knees to say the least. This is easily the worst news I’ve had since being diagnosed. To be honest I think its hitting me harder than when I was diagnosed. My survival prognostics are not good. the opposite of all the genetics that i wanted happened.

the way i've mentally coped with having a brain tumour is telling myself it will be okay your young you'll have a favourable outcome compared to the averages. but when you find out your well below average in terms of prognosis, then they become an optimistic goal