Posting this information in case it is useful for anyone else

[Mad4cats]

As well as my NHS treatment, I recently had a private appointment with a Dr specialising in the treatment of glioblastoma.

One of the things he recommended is the prescription of fluoxetine ( prozac), which I have now started. The dose hasn’t yet been titrated up, but I’m tolerating it well so far.

The research behind the recommendation, is Dr Paul Mischel from Stanford University and his team. It is published in the journal Cell Reports

They also looked at combining fluoxetine with the gold standard chemotherapy temozolomide

The research was in mice only however research will be ongoing

My GP is happy to prescribe the medication provided the dose is within BNF prescribing guidelines

I hope that posting this here enables others to potentially benefit

[TD2022]

Hi Mad4cats, thank you so much for sharing it. My husband started prozac less than two weeks ago but he's having terrible side effects from it. He is on 20mg once a day. He is half way through his radiotherapy at the moment. I wonder is prozac should have been started later though and not during radiotherapy?

[Mad4cats in reply to TD2022]

I'm sorry to hear that your husband is experiencing side effects. I started mine 2 weeks after my radiotherapy finished but maybe that's a coincidence (I didn't have the private appointment until after I'd had surgery and radiotherapy/ chemotherapy

Hopefully his symptoms will improve

[TD2022 in reply to Mad4cats]

Thank you for your kind words. Do you mind me asking what dose of prozac are you on? And are you taking it every day or only during TMZ? We privately spoke to Dr Williams who mentioned/recommended prozac when we asked the question "what else can we do" but no dose or length or best period/time to take it wasn't agreed. Thank you x

[Mad4cats in reply to TD2022]

I have initially been prescribed 20mg and have 14 days supply

I anticipate the dose increasing to 40mg. 80mg was mentioned by the Dr I saw privately however I am not sure if this dose is within BNF guidelines

I am currently in the 'month of' before starting TMZ in the second week of Dec

I hope this is helpful in your discussions with your team

I take it in the morning

There is a paper that indicates taking TMZ in the morning is more effective than at other times of day

I couldn't do this during radiotherapy as my sessions were always in the afternoon

[TD2022 in reply to Mad4cats]

Thank you so much for your reply. You are really helpful. Wish you all the best with your treatment. We have a list of other supplements and medications that we have been recommended by very reputable oncologist, message me privately if it might be helpful to you x

[GT33]

Hiya, i will ask my specialist for their thoughts, but the stuff I I take, prescribed by my specialist is, Levetiracetam twice a day (morning and night) and Citalopram in the morning, I personally add vitamin tablets such as C,D, B12, Nettle and Lions Mane, maybe I am lucky that's all I need, but it does help.

[TD2022 in reply to GT33]

Hi GT33, thank you for sharing you tips. We are thinking of adding some mushroom supplements too.

[GT33 in reply to TD2022]

I love eating mushroom's, haha

[Mad4cats in reply to GT33]

Thank you for responding- I also take Calcium and vitamin D, zinc, magnesium, vitamin B complex, and iron. I've been taking these for many years and started the magnesium and zinc supplements aover 2 years ago to try to relieve the symptoms of fatigue from long covid

What prompted you to take nettle and lion's mane?

[GT33 in reply to Mad4cats]

Lions brain for reduces anxiety and depression and helps repair damage, immune boosting etc And nettle for rhinitis, also for anemia etc