My brother was diagnosed with GBM in May of last year. He had a vigil craniotomy in May 2023. He then had chemotherapy and radiation therapy together. He was later meant to have six months of chemotherapy using a higher dose of Temozolomide. The GBM came back and he had to have surgery (December 2023) to debulk the tumour after only three months of chemotherapy with Temozolomide.
They now want to do the remaining three months of chemotherapy using Lomustine as they say Temozolomide was not effective. He is due to start using Lomustine very soon.
There has been one clinical trial (a small one) for people with recurrent GBM using Temozolomide and Sativex (a spray). The second clinical trial (a bigger one) was started last year using these two medicines.
1) I was wondering, please, whether any of you have had Lomustine and Sativex together for GBM and what your experience has been.
2) Have any of you had Temozolomide and Sativex for GBM together, and what was your experience?
Thank you very much
Hermanito
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Hermanito
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I participated in the phase 1 clinical trial of SATIVEX which was a combination of TMZ and the SATIVEX spray.
I was taking TMZ for 21 days in every 28 days and the SATIVEX spray every day for the duration of the trial. I always drank a pint of ozonated water when I took the TMZ tablet. The maximum dosage of SATIVEX was 10 sprays a day, which were split into am and pm. I set up a regular routine for sprays and everything went well.
A consequence of taking SATIVEX has been a difficulty in swallowing food at times, such as steak, potatoes, chips, toast, etc. This is easily solved by having a drink to hand when eating such foods. My personal belief is that this side effect is a small price to pay for the benefits I have received e.g. living a longer and better life.
Whilst on the clinical trial we were able to maintain a good quality of life, by ensuring that the clinical trial fitted into our lifestyle and not the other way round.
If you brother does go down the clinical trial route, he should ask the clinical trial team to provide a Julian calendar list of all the dates of his hospital visits, MRI scans, reviews etc. This will enable him and his family to fit the requirements of the trial into their lifestyle e.g. book holidays, breaks away, etc, especially, during the week off between taking the chemo tablets.
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