Trial Drugs, Growth, Epilepsy, conventional treatment, 2018 update 1

Hi guys, its been a long time coming, sorry, i've been apparently unmotivated to blog as of late, and because of that i have forgotten  a lot of things that probably should be blogged. multiple requests and i finally have a laptop to write it on.

Care Oncology Clinic

So i was interested in being part of a repurposed drug trial based in a clinic in London that my friend whose doing a lot better than me has been a part of for quite a while. After seeing my tumour on the post surgical scans i felt like it was time to jump into the private clinic and give it a go as i believed in the drugs after a lot of research (i'll make a seperate blog post about the details behind the drugs im on one day) anyway im taking mebendazole and metformin currently. i think i started this trial in december which was 5 months since the post op scan. My lovely friends and colleagues at work raised a load of money for me through bake sales and raffles without me knowing about it whilst i was off work, enough that this trial has been funded for a good while for me. if you've read this blog for any length of time you'll know that ive had more than my fair share of charitable donations and im forever grateful for this. not being paid for 7 months was making life difficult at the time. I've always been blessed with great friends.

Latest Scan and Oncology appointment.

My february scan showed a fair amount of  growth, heading south towards mid brain, between the tumour and the huge amounts of empty space from the resections, its really not a pretty sight right now, There was also some enhancement on the contrast scan although it might have been following a very large artery so hopefully its just contrast in a blood vessel and not enahnced growth areas. unfortunately i dont have the scan to show you. i promise i'll make more of an effort to get a hold of it next time (may). As i've mentioned, post resection i was encouraged to have radiotherapy but due to side effects i was inclined to skip past it back then, anyway i was recommended both rad and chemo this time to slow down growth as the tumour has now grown into an inoperable area.
I managed to convince my NO to delay chemo and radiotherapy by 3 months as i'd just got back to work and started the COC trial.

Treatment Plans

So in may i will be having my next scan, 3 months after the last, which hopefully will give some idea as to how the repuprosed trial drugs do on their own (although the protocol is designed to be concurrent with conventional therapies). This providing the predicted continued growth will leading onto radiotherapy in London, followed by probably 6 months of the chemo. Obviously i've been declining this due to the side effects and not being able to work, but i'll be taking the chemo based in wales hopefully (have an appointment with an NO in cardiff this week) so if theres any chance i can work, i'll be based in wales and will be able too. Newer research suggests hitting tumours as hard as possible as early as possible once theyve become recurrent (which granted mine did a couple years ago) rather than waiting till desperate measures are needed at the end. the balance is that rad and chemo can mutate cells even further and if you hit a potentially non recurrent tumour early enough with them you might be making things worse for yourself, anyway we are well well past that stage with me, and im biting the bullet, stopping living in denial that something might workout without conventional treatments to slow it a bit.

Diet

So i've also changed my diet to collaborate more with the metabolic approach that my drugs are imparting, i've had to go low protein keto, which is not a diet i enjoy at all. anyway the idea is obviously keep carbon sources for glioma growth as low as possible. hence low carbs, low methionine/glutamine etc. the production of ketones for energy for the body has been well studied in being neuroprotective and reducing the amount of seizure activity, and considering the increased siezure activity since the last resection, this is a promising thing. trying to keep my food intake as low in deuterium as possible (more on that another day)

Epilepsy 
My epilepsy has been changing its nature this year, the focal seizures ive been having had mostly been in my face/jaw region during the night that would wake me up after a harder day. My jaw normally remains sore for a few days after, occasionally they involved my left arm too. this week however after a day at work, a particularly heavy weightlifting session and eating some carbohydrates (kicking me out of the protective effect of ketones) and during a little house party at my house, i had  a full body seizure infront of everyone, i remained conscious but i couldnt see anything or control anything. it hurt a fair bit too. fairly frightening. luckily my friends were there to stop me fingering the electric sockets and smashing my head.


Comments

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