Hello My husband has this.  Trying to reach groups to chat. x

If you find the group can you let me know as O can't see any. Thanks

Hiya,

Sorry to hear of this...I'm new to this but got the GBM4 last April where there was so much swelling in my head that they said I had a week to two weeks at best.

After surgery and treatment I'm still here a year on.

I take everyday as it comes, nobody can play god and tell you what's left...my lifespan has changed every time I visit the clinic.

I'm back at work 3 days a week and keep myself busy,I think alot of it is how I feel about it all and it keeps me going.

That's very good to hear, Kat42. I spent a lot of time looking for happy endings for those with GBM and it's always good to find someone who has defeated the doctors prognosis. 

My husband is not doing so well. His tumour regrew immediately after surgery, and none of the subsequent treatments worked. Despite this, and despite the doctors telling us he wouldn't make it to 2018, he's still around. He managed to go on three trips with the family, one of which had him skiing! And there is a lot that he's accomplished long after others would have given up. 

Hi there,I'm sorry to hear about the unsuccessful treatment of your husband but I also believe that the will itself keeps people like us to carry on.

My strength everyday and my longing to carry on keeps me fighting , also my stubborn attitude. 

I won't be beat ...

Treatment worked (so far) for me but I also take turmeric which is currently been investigated for its usefulness. 

I have also signed up for any clinical trials available. 

Like your hubby I try and do most things infact I'm a little fearless even more so now,my son thinks it's fab as he can get to do stuff with his bonkers mum!

It's very brave of your hubby to ski and he must continue...and never pay much attention to these drs as they only know a certain amount and we are proof that they can be wrong.

Long may your hubby keep kicking it up the bottom..

Keep in touch 

Kathy 

Hi to Everybody on this thread,

I cannot help you from my own experience, as I have had 2 bouts of breast cancer. I have just searched this forum and there are 54 previous posts about GBM4. If you go to the blue banner at the top of this page and click on search, then enter GBM4 in the box, it will bring these up for you. I do hope that this will help you all.

Kind regards,

Jolamine xx

Hi all.

I'm now 3 years into my GBM  and believe the a positive attitude does go a long way to help with this.

I've had 2 bouts of Radio therapy ( the 2nd at a lower dose), 3 crainitomies for de-bulking, albeit the 3rd caused a vein bleed (now having physio to help learn to walk again( nature of the beast as I knew the risk)

I do take  other supplements. Not sure if they help but nothing ventured etc..

Immunitherapy with TMZ was my 1st line of treatment but that didn't go too well but PCV seemed to work, keeping me progression free for 15 months!  I'm now on the 3rd line treatment (carbo Platin with Etoposide) and am awaiting a slot for a phase 1 trial. Never give up the fight as depite the prognosis, you have to make the best of what you can

Hi Steve,

Welcome to our forum. It is so good to hear some good news. Keep up the positivity and I sincerely hope that you get that phase 1 trial soon and, more importantly, that it works for you.

Keep in touch and let us know how you get on. We are always here for you.

Kind regards,

Jolamine