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Grade 4 Glioblastoma

4 Mar 2021 16:08

Hi

My dad was diagnosed with a grade 4 glioblastoma in November 2020. He underwent surgery which was successful and he's just completed 6 weeks of radiotherapy. He is about to start chemo (temozolomide).

It's all a massive shock as he was completely well before diagnosis and is still fairly young. 
I feel like I need to prepare for what is inevitably going to happen and I was wondering if anyone who has been in a similar situation could maybe tell me their experience? I know it's not going to be good but I have no idea what to expect and feel that knowing what might happen will help me prepare. 
Hope it's ok to ask this
Thank you x 

Grade 4 Glioblastoma

4 Mar 2021 19:13 in response to Freya15

Hi

 

Very sorry to hear about your dad, its tough news to receive.

 

My mum was diagnosed with a tumour in April 2020 and after surgery the grade 4 glioblastoma was confirmed in May. 
 

She is in her early 60s and had 6 weeks radiotherapy and chemo at the same time. They recommended not to continue with chemo afterwards due to increased risk of COVID-19 and the relatively low chance of it extending mums life as she didnt have the correct methylated blood type or something. 
 

After the radiation stopped she was a bit worse than during it and perked up for a few months and was on good form for the most part. She started to get a bit worse towards Christmas and after barely being able to leave bed for a fortnight we went for another scan early January and they confirmed that it was growing in a different place in the brain.

 

She then had her steroids increased which helped initially  but has gradually started to lose some of her speech and is now completely confused about everything and not really able to have coherent conversations anymore. She also gets a bit frustrated now with people not understanding whats she means which is very unlike her.

 

I think my mum is very near the end and to be honest I was coming on to try and see if from anyone else's experiences whether it really is only weeks she has left, as I believe.  


I had many lovely months with my mum making great memories but if you want to know what to expect then id say prepare for the latter stages of the disease to be hard.  I'd also say use the time now while he's lucid (if he is) to chat and remember the good stuff and get anything important in order.

 

If you have any specific questions then feel free to come back to me. From what I understand everyone is different and it can depend where in the brain the tumour is as to how it affects each person. Hopefully with your dad being fairly young and in good health he can have longer than my mum looks like she will have after diagnosis.

 

All the best

Grade 4 Glioblastoma

4 Mar 2021 19:26 in response to B1415

Thank you so much for replying. 
I'm sorry you and your family are having to go through this too.
Thank you for being honest. He is very much lucid at the moment and you'd never know that anything was wrong. That sometimes makes it worse in a way as it makes it really hard to believe that the diagnosis is true. 
They've given him roughly 14 months but it was the end stage that I was unsure about really so your reply has been so helpful. 
I'm really sorry that you feel that your mum is coming to the end, I hope someone here can help you with your question. 
I feel quite lonely with this sometimes as no one really knows what to say or how to help so if you want to chat then I'm happy to do so. 
X

Grade 4 Glioblastoma

4 Mar 2021 20:12 in response to Freya15

It was no problem, I read your post and couldn't help but think it was the exact same as I felt when the same thing happened to my mum so I felt obligated to reply! Thanks for the offer of chatting I may take you up on it in the future. If there is anything else you wanted to ask feel free to send me a message. 
 

It was a year they gave my mum and that looks like being fairly accurate but I would caution to remember that even if they say they think 14 months and are right it doesnt mean that all 14 months are great. It could still mean the last few months are very hard so treasure the time you have now.

Grade 4 Glioblastoma

4 Mar 2021 20:23 in response to B1415

I really appreciate it. 
Yes, I think that last bit you mentioned was the main reason for my post to be honest. I'm a nurse but have never worked with cancer patients so it was the end of life aspect that I was unsure about and didn't know what to expect really so thank you for helping. X
 

Grade 4 Glioblastoma

12 Mar 2021 09:46 in response to Freya15

I was diagnosed with glioblastoma level4 in July 2019. I had the operation one week later and the chemotherapy and radiotherapy and am still here. I know the drs give a timescale but everyone is different. I have an MRI approximately every 3 months and a telephone consultation a few weeks after that so far has remained stable and no change. Take each day as it comes I do. I get occasional stabbing pains where my scar is but only momentarily then it goes and mood swings ever so rarely, where frustration makes me tongue las out and then I apologise. 

My first indication was a seizure totally unexpected as was fit and healthy before, I am 58 now. I thought I was having a stroke initially. However hospital confirmed it was brain tumour after scan. 

 Life is about living each day to the best of ones ability.

Regards

 

John 

Grade 4 Glioblastoma

14 Mar 2021 09:17 in response to Tyke62

Hi John,

Thank you so much for your reply and for being honest about your symptoms. I'm sorry to hear you have also been diagnosed with this but it's wonderful that you are continuing to do so well. They thought my Dad was having a stroke at first as he lost all sensation down one side but the scan revealed the tumour, he is also 58!

I hope that your scans continue to show the disease is stable for as long as possible 

Kindest regards x