Hello there

I am sorry for the delay in anyone getting back to you but this has been moved across to the nurses to reply to you.

I was sorry to learn about your recent diagnosis and appreciate you must have many questions.

Whilst we can give some general information without being directly involved in your care or having access to your medical records it is difficult for us to say what will definitely happen in your situation.

Decisions about treatment are made by a team of specialists looking at all the details of the cancer ( size, grade, location) as well as your general health to guide the best treatment.

There is information about glioblastoma here and the treatments available. Surgery, radiotherapy and chemotherapy are the main treatments for grade 4 glioblastomas usually but sometimes the tumour may be inoperable due to the position in the brain.

Do talk to your specialist team when you can about your treatment plan and what they hope it will achieve.

Grade 4 glioblastomas are high grade tumours meaning they are fast growing and sadly even if they respond to first line treatments often grow back again. If this does happen they will often offer more treatment to try and slow or stop the growth again.

I hope you have the support of friends and family around you at this time, and together with the hospital team can walk you through this journey together.

Do get back if needed or if you rather call us on 0808 800 4040 weekdays 9-5.

Best wishes

Naomi

Hi so sorry to hear about your devastating and scary diagnosis. You have every reason to feel tired after hearing such a devastating and shocking diagnosis. GBM is very cruel !!!! Yes the normal protocol for gbm is surgery, six weeks of radio, then chemo and steroids to reduce swelling around the tumour site. You will be having regular scans to check treatment working and not regrowing. Stay strong, do you have plenty of support?

just take one day at a time , ask for help and advice, but don't be googling as your brain goes into overdrive- trust me I wish somebody would of have me this advice . 
keep positive, you are going to win this fight!!!!

Good morning. I have had GBM4 since June 2019. Unfortunately just after Christmas this year it decided to return ( I call mine Brian) uninvited guest. Everyone is unique but the layout is as you said. The tiredness is a side effect which I have had for a while. I have friends on here have lived for years with multiple scans showing no progression so do not dwell on the long term prognosis take each day as it comes  medical science does not have all the answers. I would love to pass away of old age and hopefully will. Do not read stories about others having the same thing as I said everyone is different. I am in the process of moving house so Brian can kiss my butt as my family and I have other more important things to concentrate on. If you want to ask questions please do so. John 

Hi,

Thanks all for your posts. I have just finished session 11 of 30 of Radiotherapy and despite being quite tired some days, it is going quite well. The most frustrating thing is the timings of the sessions as sometimes it takes over 3 hours round-trip for a session of just 10 minutes.

I haven't had much nausea from the Chemotheraphy either and the headaches have disappeared after my first and only seizure just over 3 weeks ago. A surreal experience where I could hear people talking but I was unable to move and couldn't communicate with them but at least I have removed paracetamol from the daily cocktail of drugs I am on.

I noticed the typo in the thread title, but don't know how to change it