New Introduction

[WN20]

Have just signed up. My wife was diagnosed with stage 4 Glioblastoma in May 2021, had successful debulking early June followed by the 'gold standard' 6 weeks of radiochemotheraypy and 6 cycles of adjuvant temezolomide. Her latest MRI is now showing evidence of tumour progression and we are now facing up to our options.

[Something_blue]

Morning,

Oh I’m sorry to hear there has been recurrence. My Mum is 69 and was diagnosed with G4 GBM May 2021 and had surgery in June too. She had the standard treatment but didn’t quite finish the 6 weeks of the chemo as she felt quite poorly with it. First scan showed some pseudo progression and we are going for next scan results next weeks, always an anxious wait to see what’s happening with it.Sorry I can’t give any advice about treatment options for recurrence but the brain tumour charity support group on Facebook is a good place to post questions as there are a huge amount of people on there with GBM’s. Also the brain tumour support charity run various online support groups on zoom which I have joined and found helpful, in particular the high grade one..I’ll attach the info. The contact details to join are underneath it too.

Sending you and your wife all the best, it’s a tough road. So many ups and downs. Thinking of you.

Sheet of text

[WN20 in reply to Something_blue]

Thank you for your reply. Sounds like your mother’s case has mirrored my wife’s. The BTC gave me this group as one source but thanks again for your info. Local neuro oncology team are reviewing my wife’ case tomorrow and we are fearing the worst.

[Something_blue in reply to WN20]

I’ll be thinking of you both tomorrow and sending positive thoughts.

[WN20 in reply to Something_blue]

Thank you for that.

[Something_blue in reply to WN20]

Hi there,

I just wondered how you were getting on? Did the team come back after they had a meeting to discuss your wife’s case?

My mum had her appt on Monday with her consultant for her latest MRI results and she has a new tumour “small blob” the consultant described below the original tumour. He said it’s in a tricky place to remove and has given us some info to read about a second line chemo called PCV but the side effects are pretty horrid from what I’ve read and he said it’s a fine balance as he doesn’t want to cause her upset when she’s not feeling too bad at the moment. Plan is to re scan her in July and see what the tumour is doing but he was going to discuss her case in their meeting on Friday last week and we what the team incl surgeons throught.

Abit of a blow to say the least as we were hoping that there hadn’t been any change but this is the nature of the beast we are dealing with. Just hope it’s a slow grower.

Best wishes to you both.

[WN20 in reply to Something_blue]

We have had a confirmed return of the tumour. It is in operable, Lou misting is very toxic with only a 10% chance of any benefit so we have chosen to try Avastin. Not licensed in UK but our insurer will fund it. Oncologist says it will extend prognosis and should have limited side effects. Just waiting for BUPA to administer paperwork.

[Tansi75]

I'm sorry to hear about your wife's recurrence. Last year The Brain Tumour Charity raised funds for a phase 2 clinical trial of Sativex for recurring brain tumours. It was due to start in March, but there has been a delay. It could be worthwhile having a chat with your wife's Oncologist, to enquire if the trial could be an option when it becomes available.

I was diagnosed with a Grade 4 glio in May 2010 and participated in the phase 1 clinical trial of Sativex in 2015-16.

In the mean time there are alternative things you can do.

Have you changed your wife's diet by cutting down on unnecessary sugar? Include blueberries, pecan nuts and turmeric, which have anti-cancer properties in the diet.

I have been drinking ozonated water, which has extra oxygen in it and using drops of 3% Food Grade Hydrogen Peroxide (multi-purpose) since 2010. Oxygen kills cancer cells, whereas sugar feeds them. Google 'The Truth About Food Grade Hydrogen Peroxide' which is an American document which I used to make my decision to take it.

Also consider using food supplements to boost your wife's immune system - I have been using Higher Natures Immune+ tablets and their Complete Omega tablets since 2010.

Regarding the ozonated water, I use a Sota Water Ozonator to produce it, there are cheaper Water Ozonator's available to buy.

If you have any questions, please do send a reply and I will respond.

In the mean time the most important thing you can both do is to stay positive and believe that you can get through this.