Brain tumours

A place for people affected by brain tumours or brain cancer to support one another, ask questions, and share their experiences.

Grade 3

PinkBlue11
Posted by

Hi,

New to this site! My partner has recently been diagnosed with a grade 3 brain tumour, he is due to start chemo and radiation in the new year. 

Anyone have any information/advice/experiences with this? 

Thanks

akist
Posted by

is it a glioma? there are 100s of brain tumours, in any case is surgery not an option? have you got 2nd 3rd and 4th opinion on this? i can recommend a superb surgeon if you need. other than that a biopsy / surgery will show the type and genetic mutations - some mutations are "good" to have. you also determine methylation status which further could determine whether temodar will work at all. and if not you could go on a continuous temodar which may overcome the tumours resistance. you must also download and read ben wiliams 2014. read it at least twice and make notes. all the above assuming a glioma. 

PinkBlue11
Posted by

Thank you for your reply akist :) 

He has had surgery and the biopsy results came back as a grade 3- we are waiting for the exact type which we will find out next week along with any other details. 

I will definitely download that book thank you. Roll on next week when we will know more. Just a scary time at minute for us all! 

ruthp
Posted by

HI

I was diagnosed back in July with a grade 3 Oligodendreglioma, had it de bulked , followed by 30 radiotherapy sessions, which was quite straight forward and not that scary, was due to start my chemo on tuesday, but couldn't start as I have a chest infection at the moment, My Chemo is going to be PCV which is a mix of different drugs , a half day in hospital for a drip followed by 10 days of meds at home, then 30 days off and it starts all over again, I think it will be nine sessions in total. But different tumours are treated differently so until you find out what type it is don't take my word for it.

The best advice I can give is stay positive and fight the bugger, don.t let it take over your life, I have done things I haven't done for years like the cinema, the theatre, a concert and the best support you can give is even if you feel like crying....keep smiling, give hugs when needed and also some tough love if required, I know I needed a boot up the backside now and again!

Wishing you both all the very best 

Ruth

PinkBlue11
Posted by

Thank you for your reply Ruth

Hope your chest infection clears up soon! Did you have side effects to the radiotherapy?

Thank you for the advice - trying to stay strong for him! 


All the best with the chemo and have a great new year! Thanks again for your reply, really appreciate it. 

ruthp
Posted by

The most difficult bit was having the mask made and I was scared stiff, but they were very professional and it was done really quickly, also scared the first time I went for the treatment but it was really quick and again I was looked after so well. By day three I fell asleep on the table and halfway through, it just became a chore. I think side effects vary depending on what part of the brain the tumour is situated , but for me it was just tiring and I think that was more to dragging myself into hospital every day than the actual treatment its self. Second week in, started to lose a lot of hair so chopped off ponytail and got my husband to grade what was left, was fitted for a wig which I don't wear (yuk), had to cover head for a couple of weeks to protect skin, but now its winter I go out looking like a star trek extra cos what you see is what you get with me!!

and just to give you a giggle, when it was all over I brought my mask home to try and make a jelly mould out of it, was going to give the kids a 'jelly head' for lunch when they visited with my granddaughter.

anything else you want to know just shout, might be able to help, might not.

keep strong

Ruth

Charliecheese
Posted by

Hi Ruth,

I just wanted to contact you as it sounds like your story and experience sounds quite similar to what I am about to go through.

I had surgery on 26th Nov to debulk my tumour & was diagnosed with Oligoastrocytoma Grade 3 Glioma primary brain cancer.

I was also left with paralysis in my right leg which has made the diagnosis alot harder as I am still in hospital recovering from surgery and trying to get walking again.

The main struggle is not being independent & being away from my partner( who is now superdad )& 3 beautiful children!

I am about to start 33 session of Radiotherapy on Monday! I have had my mask fitted and have been told that I will definitely lose my hair and be very tired.

They have also done genetic testing which is good news as my tumour will respond to chemotherapy. So the plan at moment is this will follow after Radio.

I would love to hear how you are getting on & your attitude is amazing.

The jelly mould made me laugh! Mine would be a monster! I didn't realise how big my head is haha!

Your experience is so valuable to others and im sure I have lots of questions.

Just to read about the timescales of any side effects,

although i know its individual to everyone! 

My main concern is that I will have enough energy to get through treatment and manage my physiotherapy to hopefully get walking again.

I would appreciate any help or advise, I think im the same as you! It will be hats all the way! 

Hope you have had a fab christmas & wishing you & your family an amazing New Year!


Thankyou,


Laura xx



ruthp
Posted by

Happy new year to you and your family, 

My genetic testing also showed I will be a good candidate for the chemo to work its magic and like every other step, I am scared stiff, but once I do one, I get over it and just crack on, that's why the delay from last week starting was such a bugger!!

I had an awake craniotomy, talking to the doctor and surgeon at the time, was even told to keep my nose out when i asked what they were doing LOL!! Looking back on it now it was just amazing and I cant help but giggle when the psychologist in the operating theatre asked me to make a rude sign as my tremors were in my left arm and they were trying to avoid damage, I was like'excuse me?' and then stuck my fingers up at him!!!

When something like this happens , you dont think you will ever cope, but deep inside I found reserves of strength I never knew I had and you Will get through it and come out the other side,

My 2016 will be 9 rounds of chemo taking up about 45 out of the 52 weeks but hopefully this time next year we will be moving ever foreward. My first MRI since op and radiotherapy is also on tuesday with results on 28th of the month, so fingers crossed the last 8 months have been worth it.

let me know how you are getting on or send a friend request if you want to ask anything more privately than on an open forum or just for a chat now and again

have a good day, keep fighting 

Ruth

x

Charliecheese
Posted by

Hi Ruth,

It sounds so similar! I was booked in to have an awake craniotomy to prevent any damage but on the day of surgery i was reassured that from my recent scans that they were happy to keep me asleep and they would map it.

I just think when they went in the scans didn't represent what was there plus I had a 3 min seizure during surgery! 

Good luck with your scan results and the beginning of your chemo. 

Im coming to terms with how its going to be a long road to recovery but determined to get stuck in & get this sorted.

I would love to stay in touch & exchange updates, im new to the site but will send a u friend request!

Appreciate your help & support hun xx

Will be thinking of you & wish u a positive & happy start to the New Year! Xxxx

PinkBlue11
Posted by

Hi Ruth,

Hope you had a great new year.

He has a meeting next week to discuss everything so guessing his mask will be made soon! Yeah he has said he is not looking forward to going everyday. His tumour is on the right frontal lobe. Haha! That would be funny!

Thanks Ruth, really appreciate your help! Feel like we don't know anything really at the minute as it is all relatively new his diagnosis. 

Keep me updated with the chemo and good luck with it all

PinkBlue11
Posted by

Hi Charlie,

Just want to wish you the best of luck with everything this year!

Charliecheese
Posted by

Hi Bluepink11,

Im going to send u a friend request if ok? 

It would be great to keep in touch & keep updated with how we are all getting on.

2016 is going to be a positive year & we are going to get through all of this. 

Xxxxxxxxx

PinkBlue11
Posted by

Yes no problem :) It will be, can support each other!

I agree, onwards and upwards in 2016! xxxxxx 

ruthp
Posted by

will also send friend request so all three of us can keep in touch

have a good evening

xx

PinkBlue11
Posted by

Sounds good :) 

Have a good evening! xxx