Brain fog, weakness meds or tumour?

[Lin32]

New to this thank you. I am looking for information. I have a newly diagnosed grade 4 gliobastoma which has been recently debulked. I am currently awaiting radiotherapy. I take steroids in the morning and Keppra at night and experience a constant brain fog and weakness to limbs which I am unsure as to whether it is due to the meds or the tumour. The brain fog is variable but appears worse if I don't sleep well. I find it hard to stay awake at times, can't remember when I watched a full tv programme. Any help/advice from anyone who has or is experiencing this would be much appreciated.

[Tansi75]

Hi Lin32,

I was diagnosed with a grade 4 GBM in May 2010, being tired and brain fog is all part of the journey you are now on. Whilst you are on steroids, it will be difficult to sleep, I used the time to keep my brain working by reading, doing a crossword book or playing a game on my old mobile phone.

One method you could try, which I used, was when trying to go to sleep at night time, I kept repeating to myself 'delta waves' which I believe are part of the sleep process. This certainly worked for me in helping me to fall asleep.

Have you cut out all unnecessary sugar, which feeds cancer cells? I suspect you have been told you can eat and drink anything you like - please ignore such nonsense. Diet is a key component on enabling yourself to 'live a longer and better life'.

Can I suggest you download the Brain Tumour Charity's BRIAN APP, which is a very useful tool for keeping track of your progress, side effects, and seeking advice etc. On the discussion board you will find numerous posts about my experiences and the alternative anti-cancer treatments I have been using since 2010.

Most import of all, stay positive and believe that you can get through this with a positive future ahead of you. Also, allow your body and brain time to heal, it's a process that should not be rushed.

If you have any questions regarding my comments above, leave a reply here or post one on the BRIAN APP discussion board, which I access more often on my mobile phone.

🙂

[Lin32 in reply to Tansi75]

Thank you, this was very helpful. Unfortunately the brain fog prevents any form of focused activity such as reading etc at times. I will try the delta waves though. There hasn't been any discussion around duet etc so I have no idea. I have downloaded the BRAIN APP but haven't yet been able to navigate to the discussion board, I'm sure I will find it eventually. Definitely trying to stay positive and take one step at a time. This was the approach I used when I had breast cancer 5 years ago (not related to this) which seemed to help.

[Tansi75 in reply to Lin32]

Hi Lin32

If you haven't found the discussion board on the BRIAN APP, it is in the 'Get support and information' section.

Whilst I was receiving treatment I spent a lot of time falling asleep on the coach, whilst trying to catch up on my recorded episodes of Star Gate and Star Gate Atlantis sci-fi shows. I have always held the belief since May 2010, that the body is a wonderful machine and that my brain would 're-wire' itself over time. Whilst it doesn't work like it used to; however since 2020, I have found out that it is certainly working at a far higher level than I thought it would be able to.

Regarding diet, do include blueberries, pecan nuts and turmeric spice, which have anti-cancer properties. 🙂

[Cranesbill]

Hi Lin32,

After my Dad had his tumour debulked, it was about finding the balance between rest and also a little exercise. You will certainly find that even the smallest chore will take it out of you. But my Dad’s surgeon said to just start taking steps around the garden to begin with. I’m pleased to say that my Dad is doing well after the op, RT for three weeks and TMZ for a year. So we are now two years on from the first diagnosis and he is still going for long walks everyday and seems pretty well. He does stutter to get his words out every now and again but this is normally when he is tired. Don’t push yourself too much and find the balance that works for you.

Wishing you all the best.

[LucyHardy]

Hey Lin32, I hear you!! The tiredness shocks me - I have a full tumour resection in late March 2023, chemo and RT, and just done first course of chemo at higher dose. My brain fog is weird, it means that hours escape without my noticing and I end up being late for appts, work, meeting friends etc. It is so not like me and I think it's because my entire brain is consumed with terror about the whole thing! I seem to spend my whole time, browsing, googling, reading and fretting! Driving my poor husband bonkers and also much worry as he is hoping, like I am obsessively, that this behaviour is not neurological and is simply because I am so distracted by the horror of it all and wasting time on various websites that just reiterate that fact to me. Anyway, shall make a conscious effort to stop all of that and focus on being on time!! It's embarressing not to be able to operate on even this simple level!

I am taking masses of drugs, supplements, melatonin, antihistamine and have pretty bad RT dematitis which distracts me and forces me to itch horribly! Hoping all those things are responsible and not new growth. Any thoughts/comments much appreciated.

thanks Lucy

[BobbyD123]

Steroids can lead to muscle weakness. Physio therapy exercises have helped me and getting down to a steroid dosage that is less damaging. Suggest you discuss in detail with your oncologist and find the most appropriate dosage to minimise the side effects. Stay positive. Live for the moment. The power of now! Yesterday has gone. Nothing to do about that. Tomorrow is a new day. Live the moment. Good fortune on your journey!