Gliglioblastoma, IDH-wildtype (CNS WHO grade 4).

Little point telling you not to be scared…its scary!  However radio/chemo is not bad at least in my case it wasnt. Six weeks of both combined, then six months of just chemo which finished in May. I had no side effects and worked throughout. Had a clear scan in June and now consider myself cured.

best wishes.

Thank you Tashie, that's reassuring to know 

HI

sorry to hear about all that's going on. It's only natural to feel scared and its ok to feel scared too at this point. Our emotions are what makes us human.

My late husband had 6 weeks of oral chemo/radiotherapy in combination and coped really well with it. The main side effect he suffered with was fatigue which kicked in around week 4 and lasted for a month after the treatment ended. He was up and about every day though. At the start his CNS prescribed a strong anti-sickness drug and told him to take it for the first week to help his body adjust to the TMZ tablets. He did and throughout he was never actually sick so I guess they helped. 

This is a safe and supportive space so please reach out here anytime. There's always someone about to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.

It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

For now though I'm sending you a huge virtual hug and lots of positive energy.

love n hugs 

Wee Me xx

Hi, i also have GBM 4 IDH-wildtype, diagnosed at the end of May this year.

I'm coming into my 3rd week of radio and chemotherapy and felt so nervous about treatment and my diagnosis that I was prescribed Lorazepam, I ended up only taking it on the first day, the radiotherapy session is over so quickly and not as bad as I thought it would be. I'm out the door within 10 minutes. Having the eyes cut out of my radio mask helped.

I tolerate the TMZ chemo pill much better in the evening after taking an anti-sickness tablet (ondansetron).

I have good days and bad days, i know everyone says this but going for a walk everyday, even for 15 mins or whatever you can manage will make you feel better. I bought a cheap treadmill for rainy days.

Keep us posted on how you get on x

Thank you, good to know you had the mask adjusted. I was going to ask to have the holes by my nostrils made bigger to breath easier.  

Hi from me, Tashie has a point that being scared is all part of it, it’s a scary time. But reaching out for help or advice is the best thing you can do. I’ve been living with GBH grade 4 IDH-mutant for over three years, and  talking about it helped a lot, so ask anything you like on the forum - someone will have something helpful to say.

I had six weeks of chemo/radio, then sporadic chemo for a couple of months - it was fine for three weeks, but started to kick in for the last three. But if I’m honest, it wasn’t as bad as I was expecting, kind of like having mild flu (queasy, tired, wrung out). And I began to feel better very soon after the treatment was over. 

When will your treatment start, do you know? Will be thinking of you and sending positive thoughts xx

Should be starting this week coming. Waiting for a phone call tomorrow to confirm new appointments. 

Waiting is the worst, I’m glad you don’t have to wait too long

Hiya. My husband was diagnosed with GBM4 on the 3rd July. He had it removed on the 22nd, came home on the 23rd. He had his mask fitted this week and will start his chemo radiotherapy on the 21st. So we're a little bit behind you. 

I haven't posted much, but read the posts everyday. We were just sitting here discussing what might happen with the treatment, when I logged in here. It's just so uplifting, in this worrying time to read such positive comments. I've read them to Tom and it makes him more confident that he'll cope throughout the treatment. As Vinny48 says, a walk a day is great and has helped his mood so far, and he's just gone out on his pushbike today.

Good luck with your treatments, and I'll be keeping an eye out to see how you get on.

Good luck to your husband and to you too. It's just as hard for the people looking after us to see us going through this. My husband is finding it hard seeing me so poorly.