glioblastoma IDH wild type

[TD2022]

Hi all, I'm new to this site. I just want some positivity please as my husband(age41) suddenly been diagnosed with glioblastoma IDH wild type, unmethylated. Anyone here with the same diagnosis?

[15773]

So sorry to hear about your husband's diagnosis; how fantastic that you want positivity.

My husband (68) was diagnosed with the same ... GBM4 in December 21 IDHwildtype, unmethylated.

Whilst there is evidence that unmethylated types do not respond to treatment as well as methylated, there is no surety. If you want positivity, have a read of Dave Bolton's inspirational story. diagnosed 7 years ago with GBM multiforme IDHwildtype and is amazingly positive davebolton.co.uk

Back to our story ... part of my husband's tumour was removed last December, followed by radiotherapy and TMZ. He is still on TMZ, (7th cycle).

During the last year, he has demonstrated courage and positivity in coping with this cruel diagnosis. Since then he has raised £65k for a brain tumour charity (JKBTF) including 21km walk, tennis tournament etc. We have travelled Italy by train and he is supporting a charity project at St Georges hospital.

Yes, he feels ghastly and exhausted when he's on his chemo cycle. Despite knowing time is not on our side, we are throwing all our energies into making happy memories

The 2 monthly scans are an emotional coaster but so far the tumour has remained stable.

We are focused on diet and he has cut out sugar as much as possible and we tend to eat lots of oily fish, green vegetables, fruit and nuts, especially blueberries and pecans. The red wine has remained in the diet! (everything in moderation)

It's been said on this page many times, positive mindset is so important. None of us know what will happen in the future but I am sending lots of positive thoughts that you and your husband will have the fortitude to enjoy living your best life

[TD2022 in reply to 15773]

Hi 15773, thank you so much for your reply. Your husband is truly inspirational.15773 I saw today that you privately messaged me, thank you so much for checking on me and I'm so sorry but I don't know how to reply to your message, that's why I'm replying on here.

It's been none stop here, we were trying to get on the trial(phase1) in Leeds hospital but we live in Leicestershire, so there was lots of travelling and tiredness that comes with it but it fell through. So my husband started his standard treatment at out local hospital Wednesday just gone. First day wasn't a good🤮 But we have changed anti sickness tablets and its a bit better now.

How is your husband doing?

Sending you positive thoughts back xx

[15773 in reply to TD2022]

Morning, I think once the treatment has started, it helps with fear of the unknown ..... well that was my husband's view. I hope it goes as smoothly as possible and you both have the fortitude to deal with whatever life throws at us. Take care xx