Hi there,
I had my grade 4 Glioblastoma tumor removed about 6 weeks ago, in the beginning of September. The doctor told me the chemo and radiation will give me permanent short term memory loss, and only a few more months of life, so I have zero interest in treatments. Would like to use alternative treatments. Wondering what anyone has benefitted from using alternatives? Thank you…
Hi there.
I am sorry to hear about your diagnosis, and especially to get such negative feedback from your doctor.
The great news is that your operation was successful and you should be able to get back to normal for quite some time. Each person is different so you won't necessarily lose much memory and might survive some years so don't cut your expectations short
There are some tips on this page on healthy eating and positive mindset which are the best treatment. The Sativa cannabis treatment seems to be a successful one
Thank you for Sativa information.
Hi, sorry to hear the information provided by your medical team. I had mine removed in March through surgery in the head. Then I underwent chemo and radiation every, Mon to Fri. for 7 weeks. once that stopped and after 2 months I had to have a higher chemo tablet for a week for 6 months ( I will finish month 5 today).
Did they advise what percentage they managed to remove and from where? As a safety measure just made sure you have your will etc sorted (sorry to mention that, its what I did). Change your diet if possible, try and take life a bit easier ( I know its not easier changing your life).
I am sorry I don't know of any other alternatives than offered by the medical team. I know they are working on trying to find a solution but its not easy. Some do use cannabinoids/marijuana. I have thought about that myself but not done that. I just take it easy now, diet changed and try to walk for a bit everyday.
I believe they said my tumor was 3 cm, and they didn’t take all of it off, because they were worried it would affect my eyes. It was in the speech area I think, because before the surgery I was forgetting words and even my children’s names.
Most people have before/after surgery memory issues, luckily some are still accessible, others may take some time, as they have to work through a different pathway. I am exactly the same. I now have my family names etc on a keep note on my Samsung Android phone. I have some memories easy to remember others not. My tumor was a bit bigger, but after surgery and then rad/chemo initial 6 week. Then a month gap follows by chemo tabs daily for 1 week over 6 months. I'm on month 5 and at times starting to feel like me.
That’s great you’re starting to feel better. I could remember names and everything after the surgery. Hopefully, it stays that way.
I hope you do well. Keep your mind focused on good things👍
Hi there. My Dad who is 74, was given so many different time scales, the longest being 8 months. After his operation in July 2021, he’s just completed radio and 12 months of TMZ and so 14 months from the start of this, he’s still going strong. He has his down times worrying but in general he remains positive and makes sure he gets out for a long walk everyday. We had so many worrying times at the beginning thinking of timescales, that we just take one day at a time now and feel thankful for every waking day. Wishing you all the very best.
Thank you for your wishes.
Hi. Sorry to hear of your glio,.from what I've read and learning from reading on this cancer, it really depends on what part of the brain has the tumor, my husband was in the speech area, which has been removed and he also did the 6 weeks chemo pills and radiation, now he's doing the 5 days a month chemo pills, with MRI every other month, last mri was good. The first thing his Dr said was a positive mindset really helps with getting back to normal, and a negative mindset doesn't, so please stay positive, and look as every day is a gift to be stronger, all my prayers to you for a long healthy recovery. I'm sorry to hear the Drs not sounding to positive, also a palliative Dr is so helpful, they adjusted my husband's nauseous meds, which helped a lot, they are there to help, so don't think of them as the end of treatment, take advantage of their knowledge.
Thank you.
hello. im on a similar journey. had tumour removed in june 22 and was told it was the size of a walnut. i then had 30 sessions of radiotherapy and now on the tmz chemo. my memory is rubbish always getting morning an night mixed up an have noe a mobility issue with my left leg but i try and take a walk every day with my dog. positive thinking is definately a help although it can be hard when you are feeling rubbish. i go to maggies a cancer drop in centre. snd support group and i find this useful to talk to people on similar journeys. keep fighting this awful battle and take care xx
Your story is so similar to my husband's. Did he regain his speech/words? Was it better after the radiation stopped? Thanks.
Hello..My husband had his 2nd tumor removed this June..he's doing Lumistine capsules..one dose every 6weeks, he had 3 weeks of radiation prior. I'm sorry to say, this 2nd round is worse, the tumor was deeper than expected. His symptoms are worsening..his cognitive skills are slipping, his aphasia also, he is walking..but slower. My husband's diagnosed in May of 2022. This cancer takes so much away from him, it's terrible drs can't find a cure for this disease. I pray someday they will. If you'd like to chat, I'm fine with that, always nice to have someone else to lean on and with. All my prayers to your husband and you.
So sorry to hear about your diagnosis. My husband was diagnosed with GBM4 in December 21 and part of the tumour was removed, followed by radiotherapy and TMZ. He is still on TMZ, (7th cycle). Since then he has raised £65k for a brain tumour charity including 21km walk, tennis tournament etc. We have travelled Italy by train and he is supporting a charity project at St Georges hospital. Like you the survival stats he was given were very difficult to take in and yes, he feels ghastly and exhausted when he's on his chemo cycle. It's been said above, positive mindset is so important. None of us know what will happen in the future but I am sending lots of positive thoughts that you will have the fortitude to enjoy living your best life.
Thank you for writing.
Sorry to hear about your diagnosis, I was diagnosed with a grade 4 glio in May 2010, so it is possible to live beyond your prognosis.
If you go to the Brain Tumour Charity's BRIAN APP Discussion board you will find various posts I have placed regarding living with a glio, alternative treatments etc.
Most important is to remain positive, believe you can get through this and get on living your life.
Thank you for your response. I don’t think I found Brain App, and I’ve only found one of your postings. Would like to see them all. 🤗
All this time I thought it was Brain App, not Brian App.
hello, I have been diagnosed 2 months ago would love your advice for a good life Xx
Hi sorry to hear your diagnosis, my husband has the same thing, he had the tumour removed in November and is due to start treatment in a few weeks. We've been looking at alternative treatments alongside it, cbd oil certainly seems to be something many people use. We've enquired about immunotherapy too but the medical team don't think it's effective for these types of tumour, we see still researching that. There's a cannabinoids trial underway at the moment , it's at phase 2 and we asked the consultant to refer us to see if we can take part. We have a call with the professor tomorrow to see if my husband is eligible. We are also looking at lifestyle and diet etc but want to enjoy life too (however long that might be!) so we won't be too obsessive.
I hope you find something that helps and works for you. Xx
birmingham.ac.uk/research/c...
I’ve been using a lot of cannaboids, also. But it didn’t get rid of my cancer.
My GBM4 tumour was removed nearly 1 year ago and this came completely out of the blue. I had the standard treatments as all have discussed and so far, do not seem to have experienced any negative effects from these. I write a lot of lists as I do sometimes forget things but I did this before with a busy lifestyle anyway.I try to eat relatively healthily, having less carbs and sugars now and do quite a lot of exercise (which I did before anyway). Nobody knows what is around the corner so try to keep positive, focused and occupy your mind. Everyone does react differently to the treatments though so all I would say is give them a try.
The Brain Tumour Support charity runs monthly online support groups through Zoom if that is something you might find helpful too
I tried Vit C iv for 7 weeks, and lots of supplements. Nothing helped, as my tumor grew back and my surgeon took most of it out again last Thursday.
I just discover Alison gannet’s company in Canada, and I’m going to try everything she says. Just ordered a DNA, and I also asked my regular doctor for a long blood test, but she hasn’t answered yet. I may have to purchase that out of my health insurance as well.
I read Ben A. Williams book again, although it’s hard for me to understand it. (I’m Deaf and have a hard time reading some things). It’s titled Surviving Terminal Cancer. I’m also reading a book by James Templeton, he just had melanoma, which is probably much easier than our Glioblastoma brain cancer.
I’ll be trying chemo and radiation when my oncologist says to. Not excited, but hoping that my good way of eating will help keep me feeling ok with chemo and radiation.
just ordered a new book that is coming, today. He claims to talk about Ben Williams who wrote a book over 20 years ago, and is still alive after brain cancer.
Surviving Cancer, COVID-19, and Disease: The Repurposed Drug Revolution Paperback – September 20, 2020
I’m seeing 4 doctors today, getting stitches out and talking to doctors about chemo. Not sure I’ll like the conversations.
Stay positive and many blessings to you and your family.
Posting this information in case it is useful for anyone else
I am starting radiotherapy 
