Primary Brain Tumor (Glioma)
Discussion
Je ne sais pas said:
Long time lurker on the forums but this subject has finally persuaded me to register as I was diagnosed March 2022 with a brain tumour and have been through surgery, radio and chemo therapy so feel able to contribute. I’m now receiving a personalised vaccine in Germany (UK resident) to try and prevent any recurrence. My diagnosis is Grade 4 Astrocytoma, methylated, IDH mutant, not the best to have, but not the worst either.
Craig - so sorry to read that you’ve joined the club, however, I’m happy to share my own experiences with you. I’m also under the care of Cheltenham oncology team and have nothing but praise for them. The two neuro CNS are brilliant and will support you through your treatment, as are the Drs.
A few key thoughts from my journey and how i’ve managed the situation:
- do a level of exercise that gets you out of the house and gives you something else to focus on.
- find people who you’re really comfortable talking with and just chat with them. Do not bottle up your concerns and worries. Also be open and honest with people, if you’re feeling pants, tell them.
- maintain a social life so your friends/colleagues/family, can gauge how you’re doing. They’ll likely be afraid to talk to you directly about your diagnosis and treatment.
- set some personal targets or milestones and try and book something to do each month so you have something to look forward to. My milestones were to improve my 5k times (am still slow, just not as slow!).
- radio and chemo therapy make you feel rough, I had concussion for 4 months post surgery. Be aware of this and plan accordingly, it improves pretty quickly.
- if you can, try and keep working, probably on reduced hours, but it’ll give you purpose to your day.
- don’t wallow in self pity and concern, it makes things a lot worse. You’ve a long, but very manageable, journey ahead of you.
Am happy to answer any questions and share my experiences from the past year or so. Not being able to drive has been my greatest inconvenience!
Thanks Je ne sais pas, I really appreciate the heads up. As you can see am quite content to call a spade a spade (I suspect it's helping alongside my somewhat dark/sarcastic sense of humor....Craig - so sorry to read that you’ve joined the club, however, I’m happy to share my own experiences with you. I’m also under the care of Cheltenham oncology team and have nothing but praise for them. The two neuro CNS are brilliant and will support you through your treatment, as are the Drs.
A few key thoughts from my journey and how i’ve managed the situation:
- do a level of exercise that gets you out of the house and gives you something else to focus on.
- find people who you’re really comfortable talking with and just chat with them. Do not bottle up your concerns and worries. Also be open and honest with people, if you’re feeling pants, tell them.
- maintain a social life so your friends/colleagues/family, can gauge how you’re doing. They’ll likely be afraid to talk to you directly about your diagnosis and treatment.
- set some personal targets or milestones and try and book something to do each month so you have something to look forward to. My milestones were to improve my 5k times (am still slow, just not as slow!).
- radio and chemo therapy make you feel rough, I had concussion for 4 months post surgery. Be aware of this and plan accordingly, it improves pretty quickly.
- if you can, try and keep working, probably on reduced hours, but it’ll give you purpose to your day.
- don’t wallow in self pity and concern, it makes things a lot worse. You’ve a long, but very manageable, journey ahead of you.
Am happy to answer any questions and share my experiences from the past year or so. Not being able to drive has been my greatest inconvenience!
Edited by Je ne sais pas on Saturday 8th July 13:12
)The post-op tiredness is now subsiding, so I'm focusing on building up my fitness (I've got some physio lined up in the coming weeks) but In the meantime its a case of little and often walks of increasing distance, on the plus side its good to get away from the four walls of the house and take in some fresh air!
I've been doing some deep-diving on the Macmillan support website (which is excellent to be fair), but I shall keep you in mind for anything Cheltenham/treatment specific
I've heard nothing but good things about Cheltenham (mum had treatment for breast cancer during Covid) and as an architecture nerd I've been quite pleased to see they have a Maggie's Centre! https://www.maggies.org/our-centres/maggies-chelte...
Cheers,
Craig
They are progressing well, to be fair. 
I'm just having to remind myself of how far I've come (and what a number surgery has worked on me!) when I get frustrated with lack of speaking/communication, or just general tiredness and how readily I can be set back. But as I say, incremental progress, and I can take comfort in that its certainly two or three steps forward and one step back.
The plan is coming together with regards to speech and physio support- everything is lining up and the specialists seem properly motivated (especially as I'm "cross border" (Welsh GP but English specialist hospital/consultants at the QE & Cheltenham. The neuro-oncology/ multi disciplinary team are properly on it and seem to be driving the whole process, which is great, and a huge load off my mind (especially as nuanced communication, especially on the phone isn't really my forte at the moment...!): banghead:
Next Thursday is lined up for the meeting with the chemo/radio team- which hopefully will outline the game plan, timeline and likely side-effects, at which point I'll be able to plan the next few weeks!
Cheers,
Craig
I'm just having to remind myself of how far I've come (and what a number surgery has worked on me!) when I get frustrated with lack of speaking/communication, or just general tiredness and how readily I can be set back. But as I say, incremental progress, and I can take comfort in that its certainly two or three steps forward and one step back. The plan is coming together with regards to speech and physio support- everything is lining up and the specialists seem properly motivated (especially as I'm "cross border" (Welsh GP but English specialist hospital/consultants at the QE & Cheltenham. The neuro-oncology/ multi disciplinary team are properly on it and seem to be driving the whole process, which is great, and a huge load off my mind (especially as nuanced communication, especially on the phone isn't really my forte at the moment...!)
: banghead: Next Thursday is lined up for the meeting with the chemo/radio team- which hopefully will outline the game plan, timeline and likely side-effects, at which point I'll be able to plan the next few weeks!
Cheers,
Craig
cRaigAl205 said:
They are progressing well, to be fair. I'm just having to remind myself of how far I've come (and what a number surgery has worked on me!) when I get frustrated with lack of speaking/communication, or just general tiredness and how readily I can be set back. But as I say, incremental progress, and I can take comfort in that its certainly two or three steps forward and one step back.
The plan is coming together with regards to speech and physio support- everything is lining up and the specialists seem properly motivated (especially as I'm "cross border" (Welsh GP but English specialist hospital/consultants at the QE & Cheltenham. The neuro-oncology/ multi disciplinary team are properly on it and seem to be driving the whole process, which is great, and a huge load off my mind (especially as nuanced communication, especially on the phone isn't really my forte at the moment...!): banghead:
Next Thursday is lined up for the meeting with the chemo/radio team- which hopefully will outline the game plan, timeline and likely side-effects, at which point I'll be able to plan the next few weeks!
Cheers,
Craig
Sounds like they are on the case. I hope you continue to improve, and I hope, next steps are put in place soon. Nothing worse than waiting, I'm just having to remind myself of how far I've come (and what a number surgery has worked on me!) when I get frustrated with lack of speaking/communication, or just general tiredness and how readily I can be set back. But as I say, incremental progress, and I can take comfort in that its certainly two or three steps forward and one step back. The plan is coming together with regards to speech and physio support- everything is lining up and the specialists seem properly motivated (especially as I'm "cross border" (Welsh GP but English specialist hospital/consultants at the QE & Cheltenham. The neuro-oncology/ multi disciplinary team are properly on it and seem to be driving the whole process, which is great, and a huge load off my mind (especially as nuanced communication, especially on the phone isn't really my forte at the moment...!)
: banghead: Next Thursday is lined up for the meeting with the chemo/radio team- which hopefully will outline the game plan, timeline and likely side-effects, at which point I'll be able to plan the next few weeks!
Cheers,
Craig
I’m in on Friday for my OP. Dreading it to be perfectly honest.
All the best Craig.
Rich
Update: Delay on the biopsy, waiting for the last results to come though, but the oncology consultant has decided to get the ball rolling to avoid holding things up. They think its highly likely to be cancerous (Grade 2) and I'm likely to have it long term (bluntly the foreseeable/life), so its a case of management, rather than 'treatment' per se. The likely plan (subject to DNA/biopsy results) is combined radio and follow on chemo, which is tedious, as its likely to be 5 days on/2 days off for 6 weeks with follow on IV chemo. Surgery-wise there isn't much more they can do (without risking turning me into a vegetable) due to its size & location. They are going to put together a plan over the coming weeks.
Eh, tedious, but it is what it is I guess. The most frustrating thing is going to be the logistics of shuttling an hour each way daily (without a driving license..) but I'm grateful that there is a plan in place (and Cheltenham seems to be a decent location to be based at) and they are going to hit it hard.
Cheers,
Craig
Eh, tedious, but it is what it is I guess. The most frustrating thing is going to be the logistics of shuttling an hour each way daily (without a driving license..) but I'm grateful that there is a plan in place (and Cheltenham seems to be a decent location to be based at) and they are going to hit it hard.
Cheers,
Craig
My partner's sister's husband started with seizures two months ago, he was brought in and had his head scanned, nothing to see. Stabilised, sent home, took it easy. Two weeks ago seizures restarted, his head was scanned again and they found a 5.5 cm Grade 4 glioma at the front of his brain. They will operate and treat etc, but he's been given 18 months at best. Everyone is numb.
Possibly not the best result possible but, still positive Craig in that they clearly think it can be managed once it's been zapped.
The commute to and from the radiotherapy will probably be tedious, my Dad had a similar timetable for a prostate problem recently and said the travelling back and forth was the worst part! Just remember, each day that you go, the tumor gets a bit weaker!
Wishing you all the very best through this mate, your positive attitude is commendable
The commute to and from the radiotherapy will probably be tedious, my Dad had a similar timetable for a prostate problem recently and said the travelling back and forth was the worst part! Just remember, each day that you go, the tumor gets a bit weaker!
Wishing you all the very best through this mate, your positive attitude is commendable
popeyewhite said:
My partner's sister's husband started with seizures two months ago, he was brought in and had his head scanned, nothing to see. Stabilised, sent home, took it easy. Two weeks ago seizures restarted, his head was scanned again and they found a 5.5 cm Grade 4 glioma at the front of his brain. They will operate and treat etc, but he's been given 18 months at best. Everyone is numb.
Very sorry to hear this, it happens so quickly. My best friend of 40 years was given 3 to 6 months a couple of months ago, same diagnosis but completely inoperable and untreatable in his case (other than steroids to manage symptoms). He has been in a hospice or nursing home for the last 6 weeks or so, it's awful to see.popeyewhite said:
My partner's sister's husband started with seizures two months ago, he was brought in and had his head scanned, nothing to see. Stabilised, sent home, took it easy. Two weeks ago seizures restarted, his head was scanned again and they found a 5.5 cm Grade 4 glioma at the front of his brain. They will operate and treat etc, but he's been given 18 months at best. Everyone is numb.
Terrible news. 
Thanks for your support/ commiserations.
Generally just taking it all in/eating my feelings to be fair. Met up with my boss recently to plan getting back to "normal" (its 5 days on, 2 days off for treatment in Cheltenham ). Appointments are trickling through, which is good: getting a mask fitted up, target CT scan, taking bloods etc.
Bluntly the onco/treatment inpatient ward is super depressing but I think in all honesty its a combination of the hospital beige (What is it with those awful upright vinyl seats?!
), a veneer of 'positivity' And the reminder of the Ghost of Christmas future in the other patients.. Perhaps I'll look like s
t warmed up after 'treatment' starts, I suppose I shouldn't judge (that much.. 
).
The indignity/reality of chemo.. cumulatively its likely to get pretty tiring and stty. They also casually mentioned that chemo "may have an impact on my fertility" (reading between the lines it absolutely will do.. as I'm likely to be on a big hit of triple chemo- IV/oral tablets with a combo of drugs- PCV (procarbazine, lomustine and vincristine)... So rather than get into the whole debate vis-a-vis future grandkids/discussing being against the very core concept with the parents I think it just easier & simpler to go to and 'deposit' at NHS 'bank' Plus its free, so... It seems the most British way... 
Then I can park worrying about it for around 10 years before the first review (interestingly you can freeze 'it' up to 55 years..)
Ho hum. C'est la vie! Waiting for dates & times for the combo radio/chemo this coming Friday, then it'll be on with the next stage of the project..!
Cheers,
Craig
Generally just taking it all in/eating my feelings to be fair. Met up with my boss recently to plan getting back to "normal" (its 5 days on, 2 days off for treatment in Cheltenham ). Appointments are trickling through, which is good: getting a mask fitted up, target CT scan, taking bloods etc.
Bluntly the onco/treatment inpatient ward is super depressing but I think in all honesty its a combination of the hospital beige (What is it with those awful upright vinyl seats?!
), a veneer of 'positivity' And the reminder of the Ghost of Christmas future in the other patients.. Perhaps I'll look like st warmed up after 'treatment' starts, I suppose I shouldn't judge (that much.. ).The indignity/reality of chemo.. cumulatively its likely to get pretty tiring and s
tty. They also casually mentioned that chemo "may have an impact on my fertility" (reading between the lines it absolutely will do.. as I'm likely to be on a big hit of triple chemo- IV/oral tablets with a combo of drugs- PCV (procarbazine, lomustine and vincristine)... So rather than get into the whole debate vis-a-vis future grandkids/discussing being against the very core concept with the parents I think it just easier & simpler to go to and 'deposit' at NHS 'bank' Plus its free, so... It seems the most British way... Then I can park worrying about it for around 10 years before the first review (interestingly you can freeze 'it' up to 55 years..)Ho hum. C'est la vie! Waiting for dates & times for the combo radio/chemo this coming Friday, then it'll be on with the next stage of the project..!
Cheers,
Craig
Yes good luck Craig but you are now getting the best care available. Definitely get your gametes frozen, as they are throwing the kitchen sink at your tumour. Vincristine, as part of the PCV therapy, stops cell division in its tracks and although this targets cancer cells it also hits everything else where a lot of division is going on.
popeyewhite said:
My partner's sister's husband started with seizures two months ago, he was brought in and had his head scanned, nothing to see. Stabilised, sent home, took it easy. Two weeks ago seizures restarted, his head was scanned again and they found a 5.5 cm Grade 4 glioma at the front of his brain. They will operate and treat etc, but he's been given 18 months at best. Everyone is numb.
Had exactly the same news for my Dad in Dec 21. We lost him after 11 months. Sounds crazy to say but he was actually great after surgery. All of the things he was struggling with (headaches / memory loss / shaking) were instantly gone and we really thought he was going to be one of the 5% that go on for another 10+ years after diagnosis. But he just didn’t react to the radio / chemo treatment at all and in the end a decision was made to stop treatment about 6 weeks before he passed.
An awful 12 months to experience. Take any offer of support you can get because it is such a had slog mentally and physically.
OP - I really hope your treatment works out for you. The NHS and their support for this kind of thing never ceases to amaze me when I look at what they did and offered for my dad. The help was nothing short of exceptional in even the worst of circumstances.
Thanks guys. Well, a bit of an update: a minor setback...
I had a full blown seizure (Grand Mal), which was quite unpleasant to experience and massively distressing to observe for my parents (In all honesty I was completely oblivious!!) Fortunately I wasn't on my own, so I could be observed, supported and an ambulance called and assisted when properly disorientated.
They dropped me off at A&E, the MRI seems to have uncovered a cerebral edema, the QE is upping the steroids to tackle the swelling. Fairly knackered, but I was on Oramorph (the good st.. ) so will aim to sleep it off. The parents have been in a bit of a meltdown bless em, but they got to go home overnight for a decent sleep (and I got some peace and quiet...!)
I've googled (I know.. I know...) additional intracranial pressure caused by an edema/swelling and its likely treated by de-compressive craniotomy (bit of skull removed- doesn't sound fun) or loading up with steroids (basically double the dose) or the addition of a drain.. The side effects aren't great, but having come back through the seizure which essentially feels like being run over by a bus, I'm minded to suck it up and take it...!
I've been booked in for more going round the houses (MRI with contrast, trip to Gloucester etc.), just gotta pace myself and avoid burning the candle at both ends, I was up past 2/3 yesterday morning after the cinema (Oppenheimer NOT Barbie, by the way....!) I suspect my trigger for a seizure is tiredness, rather than damage/swelling. But I'm now back home for a decent rest! 
Booked in for an MRI scan tomorrow and upped the anti seizure meds/'roids. The QE seem to be reasonably proactive to be fair..
Cheers,
Craig
I had a full blown seizure (Grand Mal), which was quite unpleasant to experience and massively distressing to observe for my parents (In all honesty I was completely oblivious!!) Fortunately I wasn't on my own, so I could be observed, supported and an ambulance called and assisted when properly disorientated.
They dropped me off at A&E, the MRI seems to have uncovered a cerebral edema, the QE is upping the steroids to tackle the swelling. Fairly knackered, but I was on Oramorph (the good s
t.. ) so will aim to sleep it off. The parents have been in a bit of a meltdown bless em, but they got to go home overnight for a decent sleep (and I got some peace and quiet...!)I've googled (I know.. I know...) additional intracranial pressure caused by an edema/swelling and its likely treated by de-compressive craniotomy (bit of skull removed- doesn't sound fun) or loading up with steroids (basically double the dose) or the addition of a drain.. The side effects aren't great, but having come back through the seizure which essentially feels like being run over by a bus, I'm minded to suck it up and take it...!
I've been booked in for more going round the houses (MRI with contrast, trip to Gloucester etc.), just gotta pace myself and avoid burning the candle at both ends, I was up past 2/3 yesterday morning after the cinema (Oppenheimer NOT Barbie, by the way....!
) I suspect my trigger for a seizure is tiredness, rather than damage/swelling. But I'm now back home for a decent rest! Booked in for an MRI scan tomorrow and upped the anti seizure meds/'roids. The QE seem to be reasonably proactive to be fair..Cheers,
Craig
Eh, kick in the nuts isnt it!? Cant help but feel properly disenfranchised by it- not only do I feel like st warmed up and have a proper mental fog again, the careful negotiation I've started with my return to work/work from home has properly been upended. Understandably my employers, specialist neuro team & the parents are all suitably cautious- and this will give them a lot more evidence to hold fire & delay. A real shame, as I just want to return to "normal" - as much as we possibly can.. (and earn a bit of cash/justify my existence...) And I'm an only child/ single so I'm quite used to my independence and autonomy.
Ho Hum. Got a call with the radiologist consultant and specialist nurse on Friday to chew the fat and then the 15th for a meeting to get organised for the start of radiology, so hopefully this wont delay stuff!
Cheers,
Craig
t warmed up and have a proper mental fog again, the careful negotiation I've started with my return to work/work from home has properly been upended. Understandably my employers, specialist neuro team & the parents are all suitably cautious- and this will give them a lot more evidence to hold fire & delay. A real shame, as I just want to return to "normal" - as much as we possibly can.. (and earn a bit of cash/justify my existence...) And I'm an only child/ single so I'm quite used to my independence and autonomy.Ho Hum. Got a call with the radiologist consultant and specialist nurse on Friday to chew the fat and then the 15th for a meeting to get organised for the start of radiology, so hopefully this wont delay stuff!
Cheers,
Craig
cRaigAl205 said:
Eh, kick in the nuts isnt it!? Cant help but feel properly disenfranchised by it- not only do I feel like st warmed up and have a proper mental fog again, the careful negotiation I've started with my return to work/work from home has properly been upended. Understandably my employers, specialist neuro team & the parents are all suitably cautious- and this will give them a lot more evidence to hold fire & delay. A real shame, as I just want to return to "normal" - as much as we possibly can.. (and earn a bit of cash/justify my existence...) And I'm an only child/ single so I'm quite used to my independence and autonomy.
Ho Hum. Got a call with the radiologist consultant and specialist nurse on Friday to chew the fat and then the 15th for a meeting to get organised for the start of radiology, so hopefully this wont delay stuff!
Cheers,
Craig
Sorry to hear this Craig. This was exactly how my tumour was discovered…having a rather undignified tonic clonic seizure at work, caused a bit of a stir in the office! t warmed up and have a proper mental fog again, the careful negotiation I've started with my return to work/work from home has properly been upended. Understandably my employers, specialist neuro team & the parents are all suitably cautious- and this will give them a lot more evidence to hold fire & delay. A real shame, as I just want to return to "normal" - as much as we possibly can.. (and earn a bit of cash/justify my existence...) And I'm an only child/ single so I'm quite used to my independence and autonomy.Ho Hum. Got a call with the radiologist consultant and specialist nurse on Friday to chew the fat and then the 15th for a meeting to get organised for the start of radiology, so hopefully this wont delay stuff!
Cheers,
Craig
It really took it out of me and I felt tired and foggy for a good few weeks afterwards. I managed to do a couple of hours work a day from home whilst recovering, but had to get plenty of sleep and take it easy. I also dislocated a shoulder in the process which took a long time to return to normal.
I presume you’re already on Keppra? This is an anti seizure medication and, for me, has no obvious side effects. The big benefit is that, as it’s an anti-epilepsy medication, you can get a disabled railcard which gives great savings!
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