GREAT NEWS

[Tansi75]

The phase II UK trial of Sativex in globlastomas will open in March 2022. TBTC campaign to fund this trial has received an outpouring of public support, which has resulted in over £400,000 raised in just 3 months. More info can be found in the news section of the TBTC website.

[Sandylil]

Thank you for your message.

[Who-said-that]

Good news! Any idea how I might apply?

[Tansi75 in reply to Who-said-that]

I expect that details will be announced next year. In the mean time it might be useful to speak to your Oncologist about it. If you use the Brain Tumour Charity's Brian app, there is a section on clinical trials, so it might be worthwhile checking that to see if there is some information on there.

[TD2022]

Hi Tansi75, I understand you have been on sativex trial. My husband who's got glioblastoma and due to start his radiotherapy wants to start sativex too. Do you mind me asking what dosage you were on? Thank you

[Tansi75 in reply to TD2022]

No problem with being asked questions.

My dosage was 10 sprays into my mouth per day; I split it into 4 sprays between 8:00 - 12:00 noon and 6 sprays between 4:00 - 12:00 midnight.

I didn't take the 4 sprays and 6 sprays all in one go at the same time. I split the sprays into 2 sprays at different times in the morning and the afternoon/evening. I used my mobile phone to set reminders for me to take the sprays and recorded when I had taken them on the note pad app on my mobile phone. This ensured that I didn't forget to take the sprays and keep the daily log up to date.

Each time I used the spray it was always into a different area of my mouth e.g. top, side and underneath the tongue.

At the start of the phase 1 trial the intention was for each participant to build up to 15 sprays per day. But, early on the decision was made by the clinical trial team to reduce the target to 10 sprays a day due to the side effects some individuals were having.

The only long-term side effect I have from the clinical trial, is difficulty in swallowing certain foods e.g. steak, chips, and sandwiches, which is a very small price to pay for the benefits of the trial. The difficulty in swallowing is easily solved by having a drink of water to hand when eating such food.

The great bonus of Sativex is that it enabled us to get on living our lives and maintain a good quality of life. On one occasion, during a holiday in Edinburgh, I took my Sativex spray whilst walking around Holyrood Palace. Thus possibly being the only person to take cannabis in a royal palace; but it was done with the best intent whilst on a clinical trial.😀

I hope your husband does manage to get on a Sativex trial and wish you both the very best for a positive and long life together.

[TD2022]

Hi Tansi75, Thank you so much for your reply. All your information is really helpful. Thank you for your tips, advice and positive vibes.

Were you taking sativex during combined radiotherapy and chemotherapy? Or just during chemotherapy? Thank you x

[Tansi75]

I was just on chemotherapy when I was taking Sativex due to a recurring tumour; you are only given radiotherapy once, which is for the primary tumour. I do recommend that you husband drinks ozonated water (which has extra oxygen in it) whilst he is taking his chemo and radiotherapy, which is what I did. 🙂