Hi all,
I wanted some advice about caring for my brother who has incurable glioblastoma stage 4.
My younger brother who is only 29 was disagnosed with GMB stage 4 on Oct 17th after having a seizure. Since then he has had a biopsy which showed he his tumour is incurable and debulking surugry wasn’t an option as the tumour has started of in the thalmas moved to the left side. Instead a chemo-radio combo would be given to prolong the his life expectancy for upto 12-14months.
His tumour is on the left side and pretty big when it was diagnosed so his right side is affected with some weakness and sight impairment and as of recently suffers from seizures on a daily basis and severe headaches.
He started his treatment on 5th December for only 5 days where he suffered from multiple focal, absent and tonic-clinic seizures several times a day. After 5days of treatment he went into a coma for 4days because of the swelling in the Brain - there was no more room in his brain so his brain shut down and the tumour had also grown since the MRI the previous week. We were told treatment was no longer an option and he would need to move to a hospice for end of life care. We were given days and possibly a week.
However, they gave some dex (24mg for 48hrs) and menatol to reduce the swelling and this has worked wonders and he is now conscious and eating and drinking..he was discharged from hospital last Wednesday in time for Xmas as there weren’t any spaces at the hospice. So we bought him home after 10days. Since coming home, he is walking independently and able to wash and shower on his own, eating well and is so much better at managing his seizures and tells us when is feeling dizzy or losing his balance. I feel that he does need to be ‘watched’ just in case of any dizziness or seizures as it happens at any time and during a seizure he is not aware of what’s happening around him.
My brother is aware of everything and knows treatment is no longer an option and we have to let the disease takes it course. Today we went to see his oncologist, who was amazed at my brothers recovery, after his recent admission. My brother is going out and meeting friends, drinking and just making the of it now, as we know the inevitable. He obviously needs to be watched and picked up/dropped to places but at least he is doing what he wants and just enjoying his life.
Today we were told he could start a short course of radiotherapy - 6 sessions at high intensity over 2 weeks. But would need to reduce the dex to 12mg from 16mg before start anything.
I would like some advice as to whether we should even try to attempt any treatment at this point or should he just continue to enjoy the quality of life that he currently has for as long as possible. My thinking is that if 5days of chemo-radio put him into a coma, as the tumour is very large, and he was bed ridden and spent almost 2weeks in hospital, wouldnt the same happen again? Although a very positive person, he was fed up from all the headaches, seisures and hospital appointments/admissions and didn’t want to go out or watch tv or anything, he was sad and depressed and just kept going. Right now it’s like he has been given a new lifeline, where is just making the most of each day.
In my brothers case, we know his cancer is not curable and life expectancy was 12months with treatment. It’s been 3months since the diagnosis and we haven’t had any treatment as such.
We started off fighting and gave every option available to us a go... Now however, having seen what it can do to a person first hand, Isn’t it better having a few weeks/months of quality life than those extra few months where he could be back in hospital / not so mobile and suffering from more headaches and seizures as results of treatment?
