Hello,
This is my first post so apologies if this is in the wrong group/section.
in July I was diagnosed with a GBM grade 4 idh wildtype negative. I’ve had 95% removed and 6 weeks of radiotherapy and chemotherapy tablet (TMZ). I’m shortly to start 5 days of further TMZ every 28.
My question is should I be exploring alternative treatments in private clinics in this country or abroad which aren’t available on the NHS . I’ve read that there is a vaccine which is available in Germany for GBM suffered which tricks the immune System and stop the tumour growing back or at least slow it down.
The treatment I’ve received so far from the surgeons/drs/ nurses has been excellent and I believe in their treatment plan for me i just want to know should I be looking at a plan b should the tumour have grown back when I have a scan.I’m 44 and have two young children so am willing to do literally anything to be around as long as possible.
Any help/advice would be very much appreciated.
Hi JFish
welcome to the online community. Yes, you've posted in the right group but I'm sorry you had to. Glad to hear you sounding so positive and determined to fight your diagnosis. That's a good attitude to have.
My husband (now 52) received the same diagnosis as yourself in early Sept 2020 so I can empathise with what you and your family are going through. He too had surgery to debulk the tumour and went through the 6 weeks of oral chemo/radiotherapy. He then took the decision to decline all further offers of treatment. A decision I have to respect.
He's always been a fitness freak and is/was a marathon and ultra marathon runner. Physically he's still really fit. He's been able to get back into his running since the treatment ended in Nov 2020 and is currently running 50plus miles a week. His target for the year is 2021 miles and he's ahead of plan for achieving that. I have to admire his drive and determination. He swears its his physical fitness that has stood him in good stead here. In all honesty, I have no idea how he is doing this.
Where his tumour has more severely impacted his quality of life is in his speech/language and understanding. He really struggles to read and understand instructions. His short term memory is shot and he gets easily confused. A bit like a dementia patient. That's been so hard to see happen.
Every tumour is unique so I personally feel a lot of things are linked to where it was, the size it was and what it was impacting. His was 30mm and in the Broca's area of the brain.
My daughter investigated alternative treatment options including the one in Germany that you mention but he wasn't interested so my knowledge of these is limited. He's accepted his fate and says he wants quality of life over quantity. I get it.
I would suggest talking to your CNS to see if there are any options that they have experience of or if there are any clinical trials available in your area. I know a lot of these were on hold last year due to covid.
This group is also a good source of support and info so hopefully some of the other members will chip in their thoughts here too.
Please also remember that Macmillan Support Services offer lots of information, support, financial guidance or just someone to listen. It’s free to call 0808 808 0000. Most services are available 8am to 8pm, 7 days a week. Have a look by Clicking here to see what is available. We also have our Ask an Expert section for the more medical/technical queries, but do allow two to three working days for replies from our expert team.
I hope some of this has been a help. Sending you and your family a huge virtual hug and wishing you all the best. Stay strong. Stay positive
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Thanks for your reply wee me, somehow I have tried to reply to you and it said i had flagged to moderator!!! 
I'm sure the reply will turn up LOL
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
