Dad diagnosed with GBM

[hikelover]

Hello, I am new to this group. My dad was diagnosed with GBM in October 2021. It has been really hard for my family and I to see how quickly my dad has deteriorated in the past few months. He completed his chemo and radiation in December. We just received his MRI results this week and there hasn't been any growth since before radiation. He currently is taking steroids to help reduce the swelling. His doctor said he will need to be taken off the steroids since it can cause other side effects. Are they any alternative medications or homeopathic medicine to help reduce the swelling for GBM patients? Any advice would help.

Thank you so much!

[Hast233]

Hi there, my father was diagnosed in September with GBM and had it de-bulked in October. He came back really well but declined quite fast - I think age is a factor (he is almost 79). He had 6 sessions of radiotherapy in January but had to stop as it almost wiped him out (it could also have been the steroid reduction and testing positive for COVID-19. He had to go back into hospital as he found it really difficult walking but this improved a little when his steroids were increased again. He is due to come off them soon and I have him on Prozac and a CBD inhaler. Both long-shots but I have done many hours of reading and these appear to be the latest available things that may help based on early research. Even though his tumour has grown back significantly he is still strong mentally and we work on the principle of 'move it or lose it' - as in try and work the body and mind little and often. Steroids do help suppress the tunmour but they also effect sleep so like most of the pills they have their positives and negatives. I can only speak for myself but CBD feels like it is having a positive impact for now. We use and inhaler verrsion as it is more direct to the brain. I hope this helps in some way but I would love to also hear anyone elses suggestions.

[Something_blue in reply to Hast233]

Hi there,

I’m sorry to hear about both of your parents diagnosis. My Mum was diagnosed May 2021 with G4 GBM age 68yrs. She had a good surgery to remove the tumour and then had chemo & radiotherapy. She was v fatigued from the radio & still is quite muddled and anxious at times…main side effects seem to more cognitive for her as hers was/is in her left temporal lobe. We’re just waiting MRI results and should get them on Tuesday, abit of a nervous wait. She had a break of her chemo cycle due to low platelet level & some other side effects…she was put on dexamethose to help and this has been reduced to every other day - I agree it effects her sleep and is abit of a love hate with them as she is always a lot better when initially going on them but you don’t know what that is masking 😩 it’s so hard to see them going through it.

At the moment she takes herbal supplements I don’t know if any of these are specific to reduce swelling as my sister tends to sort those but I know turmeric might. They were recommended to help whilst on the chemo & radio. I’ll send a screen shot of what she takes.

I would be interested to hear more about the CBD inhaler? We’ve tried drops but tbh haven’t really persevered with them so maybe we should try it again with her. What brand of inhaler do you use?

Just wanted to send you both my thoughts & support.

Alice.

Colour

[Tansi75]

Hi Hikelover,There are alternative treatments your father could try; I was diagnosed with a grade 4 glio in May 2010 and have been using the following, which might be useful.

1. Drinking ozonated water, which is water with extra oxygen in it - oxygen kills cancer cells. I use a Sota water ozonator, but there have been problems with buying one on-line last year. But it might be worthwhile googling Sota to see if this issue has been resolved. If not, there are other makes of ozonators available on line.

As a consequence of my second tumour which was removed in Feb 2015, I developed epilepsy and drink a pint of ozonated water when I take my tablets.

2. I also use 3% Food Grade Hydrogen Peroxide (FGHP) multi purpose, and add 5 drops, to a 1/2 pint of water, three times a day. Google 'The Truth About Food Grade Hydrogen Peroxide' which is an American document, but the one I used to make my decision to use it. I have doing this since 2010.

3. Include blueberries, pecan nuts and turmeric, which have anti-cancer properties in your father's diet; more guidance about diet is available on the Brain Tumour Charity website.

4. I also take the following Higher Nature food substitutes Immune+ tablets which are designed to boost the immune system and their Complete Omega tablets, which are good for the brain.

Has you father cut down on his sugar intake? Sugar feeds cancer cells. I have also cut out alcohol and only have a drink on special occasions now.

It important that your father takes time to allow his brain and body to recover after treatment. He should rest when his body tells him to do so. My personal belief, based on my experience, is that this is important during the first year. He should not rush his recovery, I appreciate that it can be tempting to do this, but I think it is the wrong thing to do.

Stay positive, and believe you can all get through these difficult times.

If you have any questions, please leave a post and I will reply.

I wish you all the very best for a positive future together.

[Hast233]

Wow, I will certainly look into those things. I think the fact you are going on strong 12 years after initial diagnosis acts as a beacon of hope and support for everyone on here. I have found a few Ozonated water machines on Amazon which I will do some more research on.

Alice - regarding the CBD inhaler, we use Koi CBD - they are the only brand I could find that came in inhaler form and from my research this is the best way to get it to the brain. If he has a headache come on he takes a shot and it clears it quickly (so far). We also make sure we are living well, getting out as much as possible.

Best,

James