Primary Brain Tumor (Glioma)
Discussion
Thanks JNSP, I'm absolutely knackered (and mum had the absolute life frightened out of her..!!) In all honesty, I want to sleep constantly, and even been driven in the car is taking it out of me..! They've got me on a double dose of Keppra (1000mg) and 8mg of Dexamethasone (corticosteroid)- to be tapered down over the coming weeks. I started taking both at the same time, so its difficult to identify where the (laundry list of) side effects came from, but I understand both can have an impact (rashes, tremors, aggression, anxiety, depression, and irritability etc. (there is talk of 'Keppra rage'... go figure..! 
)), which considering the steroid can have disturbing effect on sleep, its not super helpful..
Swings and roundabouts, eh..?
Cheers,
Craig
)), which considering the steroid can have disturbing effect on sleep, its not super helpful.. Swings and roundabouts, eh..?
Cheers,
Craig
It’s brutal, but it does get better, the light at the end of the tunnel gets a little brighter each day. It was pretty frightening for my colleagues, I was out of it so was fine, did munch my tongue quite badly though! My happiest moment was learning that i’d not shat myself which is apparently a common ‘output’.
I’m on 2x 500mg Keppra per day, I only had steroids after my op for a few days, so didn’t get a chance to get steroid-rage.
My Mrs said I was very short tempered at the outset (I was vile) which we put down to the shock and annoyance of diagnosis. With hindsight, it may have been Keppra-rage, it’s settled down now though. I expect i’ll be on Keppra forever, good for train discounts, but will hopefully also help me avoid me having to surrender my driving licence again!
All part of life’s rich tapestry.
Do you know yet if you’re going for surgery / radiochemo?
I’m on 2x 500mg Keppra per day, I only had steroids after my op for a few days, so didn’t get a chance to get steroid-rage.
My Mrs said I was very short tempered at the outset (I was vile) which we put down to the shock and annoyance of diagnosis. With hindsight, it may have been Keppra-rage, it’s settled down now though. I expect i’ll be on Keppra forever, good for train discounts, but will hopefully also help me avoid me having to surrender my driving licence again!
All part of life’s rich tapestry.
Do you know yet if you’re going for surgery / radiochemo?
Full steam ahead with the radiotherapy starting on the 15th, and then mopping up with a course of likely outpatient chemo from the end of Oct. The Oncologist mentioned it could be a 6 month course, so it's looking like it's going to be a long slog, the DNA biopsy is back and while it's 'good' they have something definitive (Grade 2 IDH mutant astrocytoma MGMT methylated (20%)) - so while a higher grade than anticipated, it does mean they can target it more specifically, which naturally comes with more side effects..! A little cheery light reading.. https://www.macmillan.org.uk/cancer-information-an...
Can't help but be a bit demoralised after the slow and incremental build up back to 'normal' so to be properly set back in terms of speech, tiredness and mental fog etc., that and having to be back with the parents in all honesty is disappointing. I was taking quite a lot of comfort in the steady, albeit slow steps forward.
It feels like one step forward and two steps back tbh, still fairly wiped out, but I'm not sure if its mainly the s
tty side effects from the upped steroids or the post-seizure comedown.
Unsure if its keppra/steroid-rage or just general tiredness/impatience/irritability so I'm aiming to sleep off what I can & just pace myself to avoid getting caught in a negative spiral. They are planning on tapering the steroids over the next few weeks which is positive.
Can't help but be a bit demoralised after the slow and incremental build up back to 'normal' so to be properly set back in terms of speech, tiredness and mental fog etc., that and having to be back with the parents in all honesty is disappointing. I was taking quite a lot of comfort in the steady, albeit slow steps forward.
It feels like one step forward and two steps back tbh, still fairly wiped out, but I'm not sure if its mainly the s
tty side effects from the upped steroids or the post-seizure comedown.Unsure if its keppra/steroid-rage or just general tiredness/impatience/irritability so I'm aiming to sleep off what I can & just pace myself to avoid getting caught in a negative spiral. They are planning on tapering the steroids over the next few weeks which is positive.
Thanks Speckle. I'm trying to pace myself, but its its a case of feeling like 1 step forward and 2 steps back at the moment in all honesty. That and the cascading side effects from the additional meds (which they 'treat' with more meds and rinse and repeat.. I reckon I'll be rattling soon..!) 
Just gotta get on with it I suppose!! 
Just gotta get on with it I suppose!! Well, that's 5 sessions of Radiotherapy down, around 25 more (penciled in at least) to go... As suspected, its getting quicker/ more streamlined (down to about 10mins if there's no requirement for a confirmation scan before the nuking starts). In all honesty the hour's shuttling back and forth is the most tedious part of the process.
So far, no real side-effects (at least I think so, its difficult to tell where they are coming from!) the treatment is pretty uneventful so far, they've advised its possible fatigue may kick in around week 3, but I've got a meeting with the oncologist & specialist nurse on Wednesday to review, neurology consultation tomorrow so hopefully I'll get some more facts & figures and then I've got a meeting with my bosses on Thursday afternoon with an aim to start planning a return to work strategy.
I'm quite conscious I don't want to over promise & under deliver, and likewise it doesn't seem worth pushing myself, crashing (the latest/second seizure was pretty rubbish to be honest!!) and having to pull back/start over the process, for the sake of an extra week or two of potentially vaguely productive work. I figure at 36 I don't have to urgently blaze a trail career-wise I (all being well...
) should have enough time to make a mark and/or add value, but I'm trying to lean into a big-picture mindset at least in the short term! I'm trying not to think about how much I look like I'm bringing the average age down at the oncology centre (its not a super cheery environment in all honesty..), but on the other hand... st happens & life certainly isn't fair!! Plus I figure prognosis-wise having age on my side certainly can't hurt and hopefully it will help me bounce back from any side-effects.
Well, the Audi TT VR6 has sold, bit sad, but end of an era! Either way, I don't really regret it, and I'd rather not sit and look at it for the next few (6ish?) months! With my sensible hat on, I'd rather have the liquid cash to hand to tide me over if/when needed (I've volunteered to move on to SSP from the start of Aug, I'm aware for a small company of 10ish its great that they've offered full pay for around 2 months, a month more than they are contracted). I've taken advice from Maggies, and have applied for support from the DWP (PIP). Suitably pessimistic about how much I'll get, but I figure anything I can get is better in my pocket, if nothing else there is a possibility that any approval may unlock/cascade other support options (blue badge etc, much excitement/hoops to try and jump through to follow..)
Still, I've got a few months to research & try and save if required, ideally I'd like to try and aim for something interesting sounding but with a little improved economy next time, but we shall see! Onwards and upwards, plus I don't really need the distraction at the moment, I figure there's always going to be more TT's about!
Cheers,
Craig
So far, no real side-effects (at least I think so, its difficult to tell where they are coming from!) the treatment is pretty uneventful so far, they've advised its possible fatigue may kick in around week 3, but I've got a meeting with the oncologist & specialist nurse on Wednesday to review, neurology consultation tomorrow so hopefully I'll get some more facts & figures and then I've got a meeting with my bosses on Thursday afternoon with an aim to start planning a return to work strategy.
I'm quite conscious I don't want to over promise & under deliver, and likewise it doesn't seem worth pushing myself, crashing (the latest/second seizure was pretty rubbish to be honest!!) and having to pull back/start over the process, for the sake of an extra week or two of potentially vaguely productive work. I figure at 36 I don't have to urgently blaze a trail career-wise I (all being well...
) should have enough time to make a mark and/or add value, but I'm trying to lean into a big-picture mindset at least in the short term! I'm trying not to think about how much I look like I'm bringing the average age down at the oncology centre (its not a super cheery environment in all honesty..), but on the other hand... st happens & life certainly isn't fair!! Plus I figure prognosis-wise having age on my side certainly can't hurt and hopefully it will help me bounce back from any side-effects.Well, the Audi TT VR6 has sold, bit sad, but end of an era! Either way, I don't really regret it, and I'd rather not sit and look at it for the next few (6ish?) months! With my sensible hat on, I'd rather have the liquid cash to hand to tide me over if/when needed (I've volunteered to move on to SSP from the start of Aug, I'm aware for a small company of 10ish its great that they've offered full pay for around 2 months, a month more than they are contracted). I've taken advice from Maggies, and have applied for support from the DWP (PIP). Suitably pessimistic about how much I'll get, but I figure anything I can get is better in my pocket, if nothing else there is a possibility that any approval may unlock/cascade other support options (blue badge etc, much excitement/hoops to try and jump through to follow..)
Still, I've got a few months to research & try and save if required, ideally I'd like to try and aim for something interesting sounding but with a little improved economy next time, but we shall see! Onwards and upwards, plus I don't really need the distraction at the moment, I figure there's always going to be more TT's about!
Cheers,
Craig
Good to hear that the treatment is going well so far Craig, despite all the trudging back and forth! I've got my fingers crossed that any side effects will be kept to a minimum.
You sound like you're being very realistic about work, and it sounds like they're sympathetic to your situation beyond what is required. I hope the meeting goes well.
As someone who sold their dream car a couple of years ago (Lotus Exige in my case), I feel for you having to let the TT go - I still remember watching it being driven away!! Get yourself sorted first mate, not only will there be other TTs, there will be all sorts of motoring options available in the future.
My continued best wishes through all of this mate, keep doing what you're doing.
You sound like you're being very realistic about work, and it sounds like they're sympathetic to your situation beyond what is required. I hope the meeting goes well.
As someone who sold their dream car a couple of years ago (Lotus Exige in my case), I feel for you having to let the TT go - I still remember watching it being driven away!! Get yourself sorted first mate, not only will there be other TTs, there will be all sorts of motoring options available in the future.
My continued best wishes through all of this mate, keep doing what you're doing.
Well, that's the first week of treatment down, so far no real drama and I don't think I can assign any side-effects to the Radiotherapy, fingers crossed. They've advised that tiredness/fatigue can build up 2-3 weeks in, but I figure I can only keep an eye out and pace myself.
Had a positive catch up with the Oncologist's registrar- Nice knowledgeable and pretty candid chap. Basically when they say 'palliative treatment' they are applying a suitable amount of caution, and don't want to fully commit to "a cure" given how far along the process we are, that doesn't mean we are anything like approaching feeding tubes/adult diapers for example, loading up on painkillers and expecting I've only got a few months left, the plan is to still hit it as aggressively as they can and swing for a cure and we will end up where we end up! (all part of managing expectations I guess!). The current plan is then to start scanning/monitoring- every few months all being well and asking me to monitor symptoms- hopefully I'll be more vigilant now I know what actual symptoms can be assigned to the tumor and won't ignore/try and manage with painkillers!
And in other positive news, there is a plan to start tapering the steroids down (already planning on reducing by 2mg from today) and then at least a review every week with a plan to try and knock a similar amount off each time. There was some encouragement for a phased return to work strategy.TBH I'd be happy with half days for circa 1-3 days if needed, so I've got a zoom meeting with the directors so we will hopefully end up with a plan even if its without a fixed date for now. Also the doctor sounded pretty relaxed about me going home (alone!) in the evenings. (I went home last night, and it was pretty good to be back in my own bed and to cook my own dinner to be fair!) I think the parents are at least starting to come round to the idea as well..
I'm also trying to resist loading up on more meds, if they aren't specifically contributing to my treatment, it seems a bit... pointless? I'm not adverse to a few weeks of discomfort/side-effects which are currently stacking up, plus with chemo in the pipeline which is more than likely to make me feel like st warmed up it seems a little pointless getting too wrapped up about things! I guess from the medical professionals viewpoint if you are given a hammer, everything starts to look like a nail.... But given more meds seems to lead to more side-effects which they then seem to want to treat with more meds, it does feel like a feedback loop I don't really want to be caught up in!
Fortunately cancer is very considerate and takes a pause for weekends & bank holidays (I jest, but apparently its important I have regular breaks..
, which in the grand scheme of things I'm not completely adverse to.. It's nice trying to have a "normal" weekend..)
Cheers,
Craig
Had a positive catch up with the Oncologist's registrar- Nice knowledgeable and pretty candid chap. Basically when they say 'palliative treatment' they are applying a suitable amount of caution, and don't want to fully commit to "a cure" given how far along the process we are, that doesn't mean we are anything like approaching feeding tubes/adult diapers for example, loading up on painkillers and expecting I've only got a few months left, the plan is to still hit it as aggressively as they can and swing for a cure and we will end up where we end up! (all part of managing expectations I guess!). The current plan is then to start scanning/monitoring- every few months all being well and asking me to monitor symptoms- hopefully I'll be more vigilant now I know what actual symptoms can be assigned to the tumor and won't ignore/try and manage with painkillers!
And in other positive news, there is a plan to start tapering the steroids down (already planning on reducing by 2mg from today) and then at least a review every week with a plan to try and knock a similar amount off each time. There was some encouragement for a phased return to work strategy.TBH I'd be happy with half days for circa 1-3 days if needed, so I've got a zoom meeting with the directors so we will hopefully end up with a plan even if its without a fixed date for now. Also the doctor sounded pretty relaxed about me going home (alone!) in the evenings. (I went home last night, and it was pretty good to be back in my own bed and to cook my own dinner to be fair!) I think the parents are at least starting to come round to the idea as well..
I'm also trying to resist loading up on more meds, if they aren't specifically contributing to my treatment, it seems a bit... pointless? I'm not adverse to a few weeks of discomfort/side-effects which are currently stacking up, plus with chemo in the pipeline which is more than likely to make me feel like s
t warmed up it seems a little pointless getting too wrapped up about things! I guess from the medical professionals viewpoint if you are given a hammer, everything starts to look like a nail.... But given more meds seems to lead to more side-effects which they then seem to want to treat with more meds, it does feel like a feedback loop I don't really want to be caught up in!Fortunately cancer is very considerate and takes a pause for weekends & bank holidays (I jest, but apparently its important I have regular breaks..
, which in the grand scheme of things I'm not completely adverse to.. It's nice trying to have a "normal" weekend..) Cheers,
Craig
Absolutely! I'm very keen to try and get back to "normal" (whatever that is...) as I was starting to feel somewhat institutionalized/ infantalised having to move back in with the parents. I absolutely don't hold it against them: I can fully appreciate as their only child they want to 'fix me'! But after a couple of years living on my own (especially during 'the covid years') it's taking a bit of getting used to.. !
Well, a little earlier than expected, but I'm now having to get used to 'clumps' of my hair falling out! I'm (trying at least) to not be super concerned about it, its more just the unnatural feeling of having (admittedly) thinning hair falling out without much force. It's not like I can really afford to be too vain about it, not with my looks.. Apparently chemo is more common to cause all my hair to fall out, but I guess it shouldn't really be a surprise that firing high-powered x-rays directly at my scalp would have some impact, at least locally! Now to decide if I should get a buzz cut or a trendy hat.. 
Well, a little earlier than expected, but I'm now having to get used to 'clumps' of my hair falling out! I'm (trying at least) to not be super concerned about it, its more just the unnatural feeling of having (admittedly) thinning hair falling out without much force. It's not like I can really afford to be too vain about it, not with my looks..
Apparently chemo is more common to cause all my hair to fall out, but I guess it shouldn't really be a surprise that firing high-powered x-rays directly at my scalp would have some impact, at least locally! Now to decide if I should get a buzz cut or a trendy hat.. Well, I've 'braved' the clippers/skull shave. I'm glad I've got the weekend to get used to it! but I reckon it doesn't look that bad in the grand scheme of things..
It was a mix of wanting to 'own it' and getting fed up with the mess on the pillow and shower.
I'm not sure its really an improvement in all honesty; I feel my head looks rounder, but TBH that could just be from the weight I've piled on or I can try and keep blaming the steroids... The last doc I saw did casually mention 'moon face' as a potential side-effect..
I suspect a tan would help; I'm well aware I'm pale but my bonce hasn't seen the light of day in over 30 years so feel I need to pace myself!
Still, onwards and upwards....
It was a mix of wanting to 'own it' and getting fed up with the mess on the pillow and shower.
I'm not sure its really an improvement in all honesty; I feel my head looks rounder, but TBH that could just be from the weight I've piled on or I can try and keep blaming the steroids...
The last doc I saw did casually mention 'moon face' as a potential side-effect.. I suspect a tan would help; I'm well aware I'm pale but my bonce hasn't seen the light of day in over 30 years so feel I need to pace myself!
Still, onwards and upwards....
cRaigAl205 said:
Well, I've 'braved' the clippers/skull shave. I'm glad I've got the weekend to get used to it! but I reckon it doesn't look that bad in the grand scheme of things..
It was a mix of wanting to 'own it' and getting fed up with the mess on the pillow and shower.
I'm not sure its really an improvement in all honesty; I feel my head looks rounder, but TBH that could just be from the weight I've piled on or I can try and keep blaming the steroids... The last doc I saw did casually mention 'moon face' as a potential side-effect..
I suspect a tan would help; I'm well aware I'm pale but my bonce hasn't seen the light of day in over 30 years so feel I need to pace myself!
Still, onwards and upwards....
Good work! May as well get ahead of it so, it's one less thing to worry about. I assume the surgery left a scar? Chicks dig those apparently It was a mix of wanting to 'own it' and getting fed up with the mess on the pillow and shower.
I'm not sure its really an improvement in all honesty; I feel my head looks rounder, but TBH that could just be from the weight I've piled on or I can try and keep blaming the steroids...
The last doc I saw did casually mention 'moon face' as a potential side-effect.. I suspect a tan would help; I'm well aware I'm pale but my bonce hasn't seen the light of day in over 30 years so feel I need to pace myself!
Still, onwards and upwards....
I went through a phase of shaving my head as my hair got progressively grey (it's borderline silver now and I've learned to like it!) but, the shape of my head was revealed and it was not a good look for me! Very convenient though (and yes, the fact my head was so glaringly white didn't help so, that could be it!!)
I think there are moisturisers you can get these days which are also self tanning, might be worth a look while you develop a bit of natural colour gradually in the meantime.
Moon face - is that a medical term? Did he also mention if it was a temporary thing or, more of a permanent situation?
Edited by Speckle on Wednesday 6th September 14:19
I think it's a loose medical term, but the hope\expectation is that it should fade/reduce as I drop down the steroids. Whatever is causing it, it's not making the mask fitment any easier or more comfortable! But at least it's generally over in 5mins or so.
I do have a scar, but it's very neat to be fair! I'm just glad there were no staples or permanent stitches involved (got on well with the temp/disolving stitches)
At least the dent isn't too big!! and I'm reasonably confident I should get enough hear cover back that it should be fairly unnoticeable
I do have a scar, but it's very neat to be fair! I'm just glad there were no staples or permanent stitches involved (got on well with the temp/disolving stitches)
At least the dent isn't too big!!
and I'm reasonably confident I should get enough hear cover back that it should be fairly unnoticeable 
An interesting news story... https://www.theguardian.com/science/2023/sep/17/th... A remarkably similar story to my situation - certainly will be worth mentioning/asking about!! I suspect it won't do much good, but at least its worth a try- I assume the bods at NICE are still crunching the numbers on the cost/benefit analysis!
The side-effects are stacking up- currently pretty fked in all honesty, we've moved on from physical symptoms to mental ones, either feels like I've had a lobotomy or have early onset dementia But I have a 4 week "holiday" coming up before outpatient chemo via tablet starts, so looking forward to feeling like st warmed up at home lol 
The side-effects are stacking up- currently pretty f
ked in all honesty, we've moved on from physical symptoms to mental ones, either feels like I've had a lobotomy or have early onset dementia But I have a 4 week "holiday" coming up before outpatient chemo via tablet starts, so looking forward to feeling like st warmed up at home lol Hi craig, I took a holiday from this thread as it’s yours not mine. But as a little update I’m a little behind you. Op happened on 21 July and I am half way through radio. Just started losing my hair in the localized area where it’s being blasted. There has been a lot to digest as I’m sure there has been with you. I wish you all the best over the coming weeks with the start of chemo. I’ll check back in a few months. Best wishes.
unexpectediteminbaggingarea said:
Hi craig, I took a holiday from this thread as it’s yours not mine. But as a little update I’m a little behind you. Op happened on 21 July and I am half way through radio. Just started losing my hair in the localized area where it’s being blasted. There has been a lot to digest as I’m sure there has been with you. I wish you all the best over the coming weeks with the start of chemo. I’ll check back in a few months. Best wishes.
Glad its going well (as can be expected..!) I started losing hair locally but that quickly moved on to all over by the handful. If its any consolation, the clippers have already paid for themselves and I certainly feel more aerodynamic..! Take care and looking forward to catching up soon!
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