After diagnosis in August 2015, followed by surgery, radiotherapy and tmz. Mark had a recurrence in January 2018 followed by 6 months of tmz. He had another recurrence in October 2018 and had intense radiotherapy after rapid growth. We are now faced with a further recurrence and have been offered PCV and surgery is not an option.We are in the UK. During this time we have followed the cocktail approach used THC/CBD. and had live tumour immunotherapy in 2016 and 2018 with monthly NDV and localized hyperthermia at IOZK. Mark started the Care Oncology Protocol in December 2018
We have incomplete pathology of the tumour but evidence suggest low mutational burden and standard characteristics of mesenchymal: IDH1 wild type, P10, TERT TP53. High levels of necrosis and inflamation meant that growth wasn't detected until now with a perfusion scan. After radiotherapy Mark showed increasing signs of decline in his speech cognition and walking.
We are unsure about PCV and wondered if anyone had any experience of PCV or other agents during active progression including metabolic cocktail, chemo, or immunotherapy.
many thanks
Alice and Jane Gray
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