My husband of 64 was diagnosed with Gbm on March 1st, 2021. He had successful surgery, chemotherapy and radiotherapy and was fine for a year in good spirits. From February this year, seizures came back, he has lost movement in right arm and almost disabled now as right leg is very weak. They were going to do a second operation, but left it due to edema and his leg problems. He was put on avastin, immediately got thrombosis, and now on daily hepaxane injections. He is on his 5th dosis, but thus time he got excruciating head pain. It took a while before the hospital confirmed pain killers naproxeno and more cortisone. I would be interested to know what painkillers others used. It's terrible to see him in such pain. He has been depressed sad and angry these last months. It's very tough. I need to get some help at home even though he doesn't want any but I can't manage everything as also still working from home.
He was very fit and healthy before this struck
HI Daybreak2
a warm welcome to the group. So sorry to hear about all that you and your husband have been through.
My husband was diagnosed GBM4 in Sept 2020 so I can empathise with the journey you are on.
So far, we've not needed much in the way of pain relief> My husband was prescribed co-codamol but refuses to take them as they make him feel "funny". He hates taking anything. He's a nightmare about medication at times. He was given steroids back at the start before his 6 weeks of oral chemo/radiotherapy but decided he didn't like them so was binning them rather than taking them. Worse than a child!
This group is a really safe supportive space so I'm confident someone else will be along shortly to share their experience with you.
If you feel the current medication isn't right for him though I'd encourage you to speak to the CNS or your GP.
I found this link within the site that might help Worried about cancer painkillers - Macmillan Cancer Support
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.
sending you love and hugs.
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
