I have asked my daughters NO to prescribe the drugs used in the CUSP9 'Concept of Treatment Trial', he has agreed to try to get them prescribed minus the Auranofin.
He has agreed this as they can't offer anything else. Her recurrence is diffuse in cerebellum, extends to the brain stem and shows small area of enhancement round original site of left temporal lobe.
He said Gamma knife not an option, no trials available and she is not fit to fly for magnetic or any other therapy due to lack of mobility, tiredness etc.
At present I am trying to get health insurance co to pay for Avastin, which they are saying isn't licenced in UK.
My concern is, that apart from twice weekly blood tests I am going to have to try to oversee her treatment with these drugs and I'm very nervous. But there doesn't seem to be an alternative.
NO has said to stop Valproic Acid, presumably because of interaction.
Any thoughts gratefully received.