Hello everyone,
This is my first post to this forum and have a few questions.
in July I was diagnosed with a GBM stage 4 idh wild type negative. I’ve had over 95% removed and had a 5 week course of Radiotherapy and Temozolomode. I’m currently on a 4 week break and I’m due to start another course of TMZ Shortly. My question is, am I doing all I can for myself to stop this horrendous tumour growing back. I have two very young children and am desperate to know if I should be seeking other treatments should the treatment I’ve had/having come back. My concern is if it comes back and it’s too late to do anything else. I’ve read of a vaccine you can have in Germany to work with your immune system to stop it coming back. The Drs and Nurses have so far been phoenemenal and it is not I don’t believe in their treatment plan. I just don’t want to miss out on anything that is available somewhere which is successful but not available on the NHS.
Any help/advice would be very much appreciated.
Hi and welcome to the Online Community. I am so sorry to read about your GMB diagnose but I do hope you will find the support available in the community helpful at this difficult and challenging time.
Talking with others who are walking the exact same type of cancer treatment path (my one is completely different) will help you navigate this unwanted journey.
The New to Community is like the Community Reception area and as there are many cancer types and experiences so likewise the Community has many dedicated support groups to connect into so can I recommend you start by joining our supportive Glioblastoma multiforme group as this will be a good place for you to connect with other folks who may be on the same cancer treatment pathway.
Navigating the community will depend on the device you are using. To join a group just click on the green link above then scroll down and choose 'click to join' or 'join' on the page that opens.
You can then introduce yourself by putting up a post by clicking on ‘New Thread’ or ‘New here, say hello’ then hit the box with the X on the top right (phones).
You could just copy and paste the text from this your first post and you can also join in with existing ‘Discussions’ by clicking on 'reply'.
It’s always good to talk so do 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.
To find information covering diagnosis, treatments and pages covering most types of cancers check our Online Information and Support Section.
All the very best.
