Thanks, AGM, for sharing this. Certainly not much out-of-the-box thinking, but I did add a couple of things to talk to our NO about. No one at UCSF has mentioned "cognitive therapy" but could be very helpful in our situation.
Greg is currently seeing a PT, OT and a speech therapist. All working on his cognitive abilities.
I actually meant to say "cognitive rehab," not cognitive therapy, but I see your point... We don't care what they call it, only that they are able to "rewire" some pathways.
One of the slides suggested the normal path for patients at UCLA was to first fail therapy and then go into a clinical trial.Has anyone done a cocktail from the start at UCLA instead of waiting for the tumor to become more difficult to control?
Larry,I use UCLA for my 2nd/3rd Opinions so they do not give me prescriptions for my cocktail drugs. Dr Cloughesy does seem supportive of my approach. I started taking supplements after the radiation/tmz treatment cycle and added prescribed drugs when I started my maintenance cycle of TMZ. I have been adding supplements and drugs every since. I started my maintenance cycle in September 2015.Marc
Larry H., We did the cocktail as soon as I was aware of it. We started a modified cocktail two months after diagnosis and then when I found Stephen's blog, we got on board and slowly adding onto the cocktail I began. My husband stayed on the cocktail until a month ago when we decided to given everything a break. I'm slowly bringing back the cocktail but it is difficult, so many pills to take. That only fills him up and he has already lost 18lbs. He also started cannabis spray one month after diagnosis. It is hard to know if any of it works. See my posting on seizure and brain bleed.