Hi Everyone, I had surgery on the 5th March and the surgery was successful to remove all the tumour. My recovery from surgery has been good and now I’m starting to feel better and I'm feeling myself so that has been very positive. I have now been back to hospital for the results of the biopsy of the tumour. The results confirmed the tumour was confirmed to Glioblastoma grade 4 cancer as diagnosed on the 14th February. So that’s very disappointing that this is incurable.
I will be going back to hospital next week to discuss the further treatments which looks like radio and chemo.
Does anyone able to who can advise the trial treatments which could be an option? Always what diets should I be changing to give me the best chance to life longer?
I have see other post people talking about drinking ezonated water every day. Could anyone tell me how I do this?
Thank you
Simon (41 age)
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Simon_B
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Sorry to read about your diagnosis and welcome to the club.
If you read through some of my previous posts, you should find some useful information regarding diet and my alternative anti-cancer treatments. The most important thing you can do right now is cut out all unnecessary sugar levels, sugar feeds cancer cells.
A grade 4 GBM diagnosis can mean change of life not end of life. It is also important to consider that all life is terminal from the moment it is created.
A question to ask your Oncologist at your upcoming meeting is if there are any clinical trials available, which might be suitable. You can use the Brain Tumour Charity website to search for current available clinical trials, which might be useful, to prepare for your meeting.
When taking your chemo, make sure you drink a pint of water with the tablet, which will help your body to absorb the drug quicker and if possible take it before going to bed at night, so you can sleep through any possible side effects. My chemo was TMZ.
No matter what, stay positive and believe that you can get through this with a positive outcome.
Do listen to your body and rest/sleep when it tells you too. Recovery is not a race, so take your time, one step at a time and give your brain and body time to heal and recover. From my experience, allow at least 12 months and during that time keep your brain working.
If you have any questions please do ask and I will reply.
Stay safe, positive and laugh as much as possible.
Firstly, sorry that your going through this, it’s not a great club to be in.
My husband was diagnosed with GBM 4 in May 2024. And put on standard treatment. They removed most but not all of the tumour. A few weeks later it was confirmed that it was methylated (is your methylated?). Following this we were moved to a more experimental method of treatment upping chemo dose, with lomustine (spelling wrong). They’re are also great results in taking sativex with treatment but only via self funding and you need to get your consultant to prescribe. It’s not cheap. And he’s also been on optune TTF since Sept. So far tumour is stable. He’s a fit and health 47 year old and apart from getting tiered some days he’s like he’s was before gbm (although fitter). Diet wise: AVOID ALL SUGAR. We started with Keto but he lost too much weight and was too weak, so now we cut carbs and only “good carbs” when he does have it. Because he exercises loads it balances out.
He is also in Prozac which has also shown to slow tumour growth and reoccurrence.
We are self funding by fundraising as optune and sativex not cheap. Have a chat to your consultant. There are also immunotherapy DCVAX-L which you may want to explore. It’s being reviewed for licensing with NICE.
Keep positive, keep smiling, keep living. This is a life adjustment that no-one wants but it’s here so let it not define how you look forward. But please please look forward there is still time to live, laugh and love. Good luck
Hi SimonYoure following the same.path as me..had the op last September. Same diagnosis. Had 6 weeks Radiotherapy and Chemotherapy tablets. It wasnt as.bad as l thought it would be. One thing l did do is make sure l kept myself fit and listened to my body and more importantly say positive. Youre 20 years younger then me so you do ok👍
Sorry about you diagnosis but Tansi72 is correct it is a change of life and not necessarily end of life, The fact that they were able to remove all the tumour is a big win. I have had great success with both chemo (as I have the methylated gene) and radiation with all 3 tumours shrinking with treatment.
The chemo (Temezolomide) was oral and pretty uneventful but the radiation was an awful experience. While not sick, I was completely exhausted throughout the treatment and for 4 month thereafter,
Pleased to say my last MRI showed that the tumours have shrunk dramatically and I am almost back to full strength. Am exercising regularly and working part time. I have met GBM patients who are extending beyond 4 to 6 years so don't listen to the prognosis (or google it).
Also - everything Tansi mentioned!
Wishing you the very best with your treatment and recovery!
I was diagnosed with GBM 4.5 years ago with a methylated tumour. I had the standard radio and chemo treatments. I agree with all the above. I eat healthily, take long walks and workout 5 days a week and lead a full life. I just wanted to add to the positive comments and that the outcome can be positive. I wish you well.
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