my son has been in hospital and diagnosed with a grade 4 glioblastoma , he was operated on three days ago and told if it had been two days later we would have lost him.
He had originally been diagnosed as depressed and having panic attacks so this is a huge shock to all of us
Unfortunately they couldn't remove all the tumour.
I just wanted to ask how long the confusion lasts after the surgery
we are so worried
its all a nightmare
Hi ThereI had op to remove same tumour in August. Im 60. Things settled down quite fast after the op. Bit of brain fog etc. Ok now. Just finishef my radiotherapy now looking forward to christmas. Best advice l can give your son is to remain positive. Good luck x
breathe, you have a village behind you. It’s a huge shock and not only that a scary one. But this is the beginning of a new journey, have hope.
My husband was diagnosed with GBM4 methylated in May this year given 12-15 months to live after surgery and with standard treatment. Thanks to this and other forums we became informed of what has worked and not worked for others.
Some of the stuff we’ve been doing:
1. Keeping active is very important, but when he’s tiered he MUST rest
2. Diet- keto. Combohydrate and sugar FEED glioblastomas. Cut these out. (Although now starting to add a few carbs as he’s lost too much weight, healthy carbs)
3. Fast while on chemo. There have been studies that show, fasting while on chemo lets the chemo better target the tumour. I recommend you look at some videos by Mindy Peltz. She has a lot for women but does also look at men’s bodies and cancer patients. She has lots of free YouTube videos.
4. Have you investigated OPTUNE TTF? My husband started in Sept. It’s had amazing results. Not every country finds it, we are having to self fund and are raising funds through crowdfunding. (Look on brain tumour charity website
5. Because my husband’s tumour is methylated we are taking Sativex and Prozac. Both had had successful results in slowing or stopping growth.
Not sure if any of this is helpful, I hope you are all coping ok. We live in the moment, do not think about what we do not know yet and enjoy each other right now. My husband is 47 and we have a 10 year old and 12 year old.
I also came across an interesting Facebook post yesterday facebook.com/share/p/14aCKG...?
Good luck, we’re all here for you and I wish you and your son all the best
Hi Pat3Fish,
I was diagnosed with my grade 4GBM in May 2010, if you look at some of my previous posts you will hopefully find some useful information, especially about the importance of diet and cutting out all unnecessary sugar, which feeds cancer cells .
It is not unusual for surgeons to not be able to remove all of the tumour, they do err on the side of caution to ensure they do not cause any extra damage to the brain. It was the same in my case, they got out as much as possible. I didn't have any confusion after my surgery, but it does take time for the brain and body to recover.
What I found useful was to keep my brain working before and after my surgery by reading, listening to music and doing cross word puzzles and playing the game on my mobile phone.
In the mean time the best thing you all can do is stay positive; a grade 4GBM can mean 'change of life, not end of life'. Whilst he is recovering spend time talking and planning for the future, for example, one of the things I and my wife discussed early on was having a break away before I started my treatment.
Take each day and step one at a time, do not waste time and energy worrying about 'what if situations' and concentrate on enjoying your lives together in the best possible way. Also, laugh as much as possible, which is a great healer.
Wishing you all the very best for a successful recovery.
If you have any follow up questions, please do ask and I will reply.
Tansi 🙂
Thank you for your reply unfortunately his recovery is not going well as he has still got considerable swelling and cannot understand what’s going on or speak properly
We are trying to remain optimistic but it’s so difficult at present as he’s so far away
He just keeps ringing us and repeating I love you mummy then goes
My husband has multiple myeloma and on permanent chemo it’s overwhelming
I’m so sorry you are going through this. I pray for you and your family. It’s not easy. I totally understand what you are going through. Lots of hugs and positive energy your way
I will pray for you too, your family & your sons full healing. I was diagnosed with Stage 4GBM Oct 13, 2023 . Had an emergency craniotomy, then radiation/ chemo etc. My brain was literally cooked initially but now with the help of Jesus I have made a miraculous full recovery. Still a few side effects from treatment but standing on the Word of the Bible & Gods promises. Through Christ all things are possible. Keep speaking life & wellness over him & know it’s only temporary. I had short term memory loss at first but now a year on it’s like I have a fresh new mind. You will get through it, just need patience & to stay positive. If he’s made it through the op that’s the first big thing. I switched food to a Metabolic Therapy Process diet from an encologist in NZ & I feel that made a huge difference, plus sea cucumber, reading the Bible daily / faith & cutting out all unnecessary sugar etc .
Also learning new things gentle for my brain to build new neuropathways and and as much exercise as possible .
My wife had a golf ball sized tumor discovered, diagnosed, removed September 2023. She continues to have some memory issues, fatigue issues but overall has done pretty good. Each person recovers differently...the one advantage your son has is his age, assuming he's much younger than us here, 54 and 52. Younger people tend to recover faster, more complete than older folks. Example - I was 22 when I suffered a severe brain injury and spinal cord injury, and was told repeatedly by medical staff treating me that if I had been just 5 yrs older my recovery would not have been near as complete. Sorry for the novel, but show patience, and he will most likely find away to help with his confusion, other issues. Praying for you, and all in this group, for as complete a recovery as possible for. your son, for you as parents, and for your family. Blessings...
Kyle
GBM stage 4 in my Dad
Looking for additional treatments for GBM 4 husband
Glioblastoma brain tumor
Brother in law,62 recently diagnosed with grade 4 Glioblastoma . Looking for non-traditional treatments. He is not interested in traditional
Is it time to stop using the words ‘terminal cancer’ and instead use ‘grade 3 or 4 cancer’ for high grade tumours?
