Treatment Decisions and Post OP Scan Results
I think i'm about 3 and a half months out from my op now and just getting around to making treatment decisions, the fatigue and effects of surgery are still real and heavy, my scan results came back and were unfortunately disappointing so i felt like i needed to go with a treatment option of some sort. This will probably be a long one. its 2am and ive put it off for a few days.
Scan Results
Unfortunately i didnt manage to get the same slices and sequences for comparison this time. but i will do in the future hopefully. a FLAIR sequence vs t2 should be sufficient for now.
Old Scans in 6 month jumps.
These are two flair slices from my post op scan about a month ago. its hard to compare because of the different slice and sequence, but to me it looks like the anterior mass is now of a similar size to 6 months post op, however it seems to be heading south deeper into the brain (making radiation much less tempting). I'm assuming my brain has changed shape significantly due to the surgery so i'm not sure whether the southern shift is growth or just a change in shape. i am currently assuming growth because they did say they got the majority out.
The Northern most mass which is the newest area of growth and the one connected to my SMA seems to have been mostly removed,
I believe a good portion of the posterior mass by motor cortex has been excavated too, but obviously the bit actually interacting with my motor cortex is still well and truly there. its just been debulked.
In summary i feel good about the north and posterior section (comparatively) but the anterior section is causing me just me more concern than the scan that made me decide to have another jump under the knife.
Treatment
The problem with post operative radiation in my scenario is the Tumour left behind is so extensive the radiation field would be huge. the side effects would be, well im not sure, ive heard mixed opinions. But its likely not going to be good, and im well other than post operative side effects atm, and hoping to teturn to work and my gut feeling is radiation wouldnt allow a normal life again. and as i've been told even by the optimistic oncologist. rad wouldnt increase survival time. so its a no.
Chemo on the other hand, although toxic to just about everything is looking more favourable currently. Apparently my tumour is now heavily methylated which means its slightly more susceptible to chemo than before (i would like to have an answer as to why, but i cant find one with my current limited attention span) sorry. anyway, i want save chemo for when i have radiotherapy because i understand they maybe work synergistically with the chemo sensitizing the tumour to radiation or vice versa (its 2am sorry). and i may aswell take all the side effects at once rather than spread them out and prolong any suffering. although my friend who has been through temzolomide before said it was actually pretty alright so that's good to know :)
Neither conventional choices seem to have enough evidence behind them for this stage of tumour at the moment so im going to save them for the dire and probably desperate times in the future. my friend Gemma and fellow blogger (her blog seems to have disappeared for the time being or i would link it) has been part of a private clinic for a while now using repurposed drugs and although doing something i looked into early on is doing very well by comparison to me. I wasnt interested at first because she wasnt using any drugs i was particularly interested in but in a fairly recent conversation she mentioned starting a drug i'd been following for a while since it was put on the astrocytoma options website.
Anyway the idea is, because the options for brain tumours without the 1p19q deletions are very limited and rather ineffective along with limited up and coming treatment methods that are looking promising there is a big market for trialing already existing and off label drugs that arent oncology related but for whatever reason/mechanism have some impact upon brain tumour pathways. The clinic is a general oncology clinic and i feel like some of the drugs they offer whilst may be effective for some cancer types maybe ineffective and potentially pointless with regards to my cancer.
and from talking to them on the phone i think they might be missing a couple drugs i'd like to add that are synergistic with mebendazole which is the main drug im interested in. (its an antifungal that has shown some promise with regards to glioma) im hoping to try and convince them to let me on the others i like too. So the idea behind this is i think is to take a cocktail of drugs with different and hopefully synergistic mechanisms of effect on the glioma cells with hopefully less toxicity than conventional treatments.. sounds too good to be true right? it probably is. i think its time though.
There was a guy you can look up called professor Ben williams who was diagnosed with a glioblastoma (way worse than mine) and used/pioneered this method and is still alive today 20 years later vs the 15 month average.
i've also decided to go back to my original supplement plan from when i was first diagnosed and was doing well, i'm well aware this is very possibly just coincidental. but i'd like to go back to it anyway. the supplements like IP6, inositol and ashwaghanda have well documented effects on glioma. All this along with some fasting and low methionine diet and hopefully i'll be doing one thing right in my molotov cocktail of drugs and supps.
Either way i've never been more hopeless towards my situation than now. I think i'm just about holding back a complete breakdown though. The only way through this is taking it one day at a time without contemplating your future. im going on holiday next week btw. people keep asking me if im looking forward to it. and the honest answer is always no. but i think thats only because ive got so good at taking one day a time that i dont really think about it until its the night before or on the day.
Carmarthen Charity Money
you may remember a couple of years ago Glangwlli radiology department gave me a substantial charity donation to go on travelling with. They asked my girlfriend at the time where i really wanted to go which was macchu picchu, however i dont think im capable of such a feat anymore. ive been to the andes before and know how challenging it is. So my family are going on a vegan cruise back to the parts of norway i havent seen before. Its next week so in the middle of my recovery time, i initially was against going because i felt bad about going on a great holiday when i'm off sick from work, but since my results ive decided i can't say no to great opportunities anymore. This holiday combined with the harley street clinic is now what i've chosen to use this charity money for. i hope all those in carmarthen can approve of my usage of their money.
on a side note to this, im sure all people with cancer diagnoses will understand travel insurance is often as expensive as the entire trip for us. i recently paid £190 for 3 days in europe last year. we were quoted £500 and something for this trip as the cheapest offer from conventional insurers, however we were informed about an insurance company called ''Insurance with'' who quoted £51 instead. (Thankyou Vicks) they ask loads of questions but a saving so substantial is so worth it.
Scan Results
Unfortunately i didnt manage to get the same slices and sequences for comparison this time. but i will do in the future hopefully. a FLAIR sequence vs t2 should be sufficient for now.
The Northern most mass which is the newest area of growth and the one connected to my SMA seems to have been mostly removed,
I believe a good portion of the posterior mass by motor cortex has been excavated too, but obviously the bit actually interacting with my motor cortex is still well and truly there. its just been debulked.
In summary i feel good about the north and posterior section (comparatively) but the anterior section is causing me just me more concern than the scan that made me decide to have another jump under the knife.
Here we are with the axials now, again this isnt the same sequence but i think the slice level is pretty close. as you can see from this angle the tumour size is the equivalent to my january scan. so it feels like other than the north section the surgery has reversed 6 months growth, or at least if you make the assumption that the 3 month post op scan result is equivalent to what an immediately post op scan would look like. i believe this is a dangerous assumption to make though. I'd be lying if i said i wasn't terrified by this all.
Treatment
The problem with post operative radiation in my scenario is the Tumour left behind is so extensive the radiation field would be huge. the side effects would be, well im not sure, ive heard mixed opinions. But its likely not going to be good, and im well other than post operative side effects atm, and hoping to teturn to work and my gut feeling is radiation wouldnt allow a normal life again. and as i've been told even by the optimistic oncologist. rad wouldnt increase survival time. so its a no.
Chemo on the other hand, although toxic to just about everything is looking more favourable currently. Apparently my tumour is now heavily methylated which means its slightly more susceptible to chemo than before (i would like to have an answer as to why, but i cant find one with my current limited attention span) sorry. anyway, i want save chemo for when i have radiotherapy because i understand they maybe work synergistically with the chemo sensitizing the tumour to radiation or vice versa (its 2am sorry). and i may aswell take all the side effects at once rather than spread them out and prolong any suffering. although my friend who has been through temzolomide before said it was actually pretty alright so that's good to know :)
Neither conventional choices seem to have enough evidence behind them for this stage of tumour at the moment so im going to save them for the dire and probably desperate times in the future. my friend Gemma and fellow blogger (her blog seems to have disappeared for the time being or i would link it) has been part of a private clinic for a while now using repurposed drugs and although doing something i looked into early on is doing very well by comparison to me. I wasnt interested at first because she wasnt using any drugs i was particularly interested in but in a fairly recent conversation she mentioned starting a drug i'd been following for a while since it was put on the astrocytoma options website.
Anyway the idea is, because the options for brain tumours without the 1p19q deletions are very limited and rather ineffective along with limited up and coming treatment methods that are looking promising there is a big market for trialing already existing and off label drugs that arent oncology related but for whatever reason/mechanism have some impact upon brain tumour pathways. The clinic is a general oncology clinic and i feel like some of the drugs they offer whilst may be effective for some cancer types maybe ineffective and potentially pointless with regards to my cancer.
and from talking to them on the phone i think they might be missing a couple drugs i'd like to add that are synergistic with mebendazole which is the main drug im interested in. (its an antifungal that has shown some promise with regards to glioma) im hoping to try and convince them to let me on the others i like too. So the idea behind this is i think is to take a cocktail of drugs with different and hopefully synergistic mechanisms of effect on the glioma cells with hopefully less toxicity than conventional treatments.. sounds too good to be true right? it probably is. i think its time though.
There was a guy you can look up called professor Ben williams who was diagnosed with a glioblastoma (way worse than mine) and used/pioneered this method and is still alive today 20 years later vs the 15 month average.
i've also decided to go back to my original supplement plan from when i was first diagnosed and was doing well, i'm well aware this is very possibly just coincidental. but i'd like to go back to it anyway. the supplements like IP6, inositol and ashwaghanda have well documented effects on glioma. All this along with some fasting and low methionine diet and hopefully i'll be doing one thing right in my molotov cocktail of drugs and supps.
Either way i've never been more hopeless towards my situation than now. I think i'm just about holding back a complete breakdown though. The only way through this is taking it one day at a time without contemplating your future. im going on holiday next week btw. people keep asking me if im looking forward to it. and the honest answer is always no. but i think thats only because ive got so good at taking one day a time that i dont really think about it until its the night before or on the day.
Carmarthen Charity Money
you may remember a couple of years ago Glangwlli radiology department gave me a substantial charity donation to go on travelling with. They asked my girlfriend at the time where i really wanted to go which was macchu picchu, however i dont think im capable of such a feat anymore. ive been to the andes before and know how challenging it is. So my family are going on a vegan cruise back to the parts of norway i havent seen before. Its next week so in the middle of my recovery time, i initially was against going because i felt bad about going on a great holiday when i'm off sick from work, but since my results ive decided i can't say no to great opportunities anymore. This holiday combined with the harley street clinic is now what i've chosen to use this charity money for. i hope all those in carmarthen can approve of my usage of their money.
on a side note to this, im sure all people with cancer diagnoses will understand travel insurance is often as expensive as the entire trip for us. i recently paid £190 for 3 days in europe last year. we were quoted £500 and something for this trip as the cheapest offer from conventional insurers, however we were informed about an insurance company called ''Insurance with'' who quoted £51 instead. (Thankyou Vicks) they ask loads of questions but a saving so substantial is so worth it.
Interesting blog. Very usefull blog.
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