Glioblastoma grade 4

Hi Lh65 and a very warm welcome to the online community

I'm very sorry to read that you've recently been diagnosed with a glioblastoma but it's great that you've felt able to reach out to this community for support.

I didn't have the same type of cancer as you so don't have any comparable experiences to share but I noticed that your post hadn't had any replies yet. Replying to you will 'bump' it back to the top of the discussions list where it'll be more easily seen.

There is also a dedicated glioblastoma group which you might like to join and post in as well. If this is something that interests you clicking on the link I've created will take you straight there.

It would be great if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

Hi LH65, 

I'm so sorry that you have had this diagnosis, I know everything is such a whirlwind of emotions and fear especially in the first few months. 

My husband was diagnosed with GBM4 in September 19. Like you he has surgery followed by 6 weeks of radiotherapy and chemo.  He wasn't feeling too bad during his 6 weeks of treatment. The radiotherapy only took a few minutes each day. He did get increasingly tired during those weeks and once he'd finished the tiredness really got worse. He had no sickness and didn't feel awful during the treatment. Then he had 4 weeks to recover a bit then he started the 4 weekly cycles of just chemo. He was self caring and independent (apart from driving) through those 6 weeks. 

I hope this helps reassure you in some way. He's still with me and still fighting 18 months on. 

Good luck with your treatment

Sending love and best wishes x

I am doing the most toxic chemo there is and it just makes me very tired for a few days, so the only care I require is someone to cook and serve me meals. I can handle everything else and if I were pushed I'd be able to raid the kitchen on my own even during the worst days of chemo. Radio depends where it is and what else it may cause. But under normal circumstances I do not think any of these two treatments will incapacitate you to the point that your daughter will find it hard to cope. Radio will require you to visit the hospital daily, this may be an issue. Your daughter will need to declare herself as your primary carer, otherwise they will not let her in.

Hi Lh65  

so sorry to learn that you got this diagnosis. My husband got the same diagnosis in Sept 2020, had an awake craniotomy followed by the 6 weeks of oral chemo and radiotherapy. He tolerated the treatment very well. There was some feeling of nausea with the chemo but no actual sickness. As LC 50 has already said there was a lot of fatigue by about week4/5 and for roughly a month afterwards but at all points he was up, showered and dressed every day, exercising when he felt like it. He's a fitness freak and has run marathons in the past and will push himself physically to the very end.

I suspect a large part of coping is personal strength and mindset.

He declined the offer of further oral chemo - not  a decision that he took lightly but so far he's keeping well and still running. 

Hope the treatment goes well for you

Big hugs

Wee Me  x

Thanks everyone for your comforting words, hope I will be the same.

Treatment started Tuesday and was very sick that evening, had to get different anti-sickness tablets from out of hours. Since just feeling nauseous in afternoons/ evenings, any suggestions to help with this? The mask is very tight / uncomfortable.

Treatment started Tuesday and was very sick and had to get other abit-sickness tablets from out of hours, since have just nauseous afternoon/ evenings any suggestions to avoid this?? Mask is also very tight/ uncomfortable. Just gave to take day at a time 

Hi Lh65, 

Really sorry to hear that this treatment made you so sick. My husband takes ondensetron anti sickness with his chemo but I know different medications work better for some than others.  I suppose trial and error is the best way to find what works for you. How are you feeling now? . 

My husband also struggled with the mask being very tight. The steroids had made his face swell.  They did try and cut bits of it away to make it more comfortable for him but he always came out with a honeycomb patterned face!! 

I hope the rest of your treatment is a little easier for you x

I received those anti sickness from my doctor. Eating ok now and feeling a bit better  4 down 26 more treatments to go

HI Lh65

sorry to her you've had a rough first week. They gave my husband quite strong anti-sickness pills to take for the first 5 days and they helped him. After the first week he didn't need the lower strength ones although towards the end of the 6 weeks there were a few days he felt nauseous but not sick (if that make sense)  He too found his mask very tight and uncomfortable. Kept complaining that they squashed his nose. He got to bring it home after the final treatment and was trying it on while I was driving. He scared the life out of a woman who was sitting on a bus beside us at some traffic lights! 

Hang in there. 

Big hugs

Wee Me  x