My Dad was diagnosed in Nov. 2016 with GBM (MGMT methylated, Positive for 1p Deletion, NOT IDH1/2).
He has completed standard chemo-radiation and is about to start his 6th cycle of monthly TMZ. We have had (2) Avastin infusions so far (hoping to keep this as minimal as possible) to help us wean off decadron, now down to 1mg per day.
As of our last MRI my Dad is considered "Progression Free - Post Avastin".
We are seeing Dr. Butowski at UCSF. He is very intelligent and has been willing to discuss our cocktail decisions. He simply states what is safe, his belief of what works and what does not based on research, and then let's us make our decision.
We do not want to switch NO's, but so far in this journey he has not been interested in any clinical trials (for my Dad) happening anywhere on the West Coast. He feels we stick with TMZ and sporadic Avastin infusions until (statistically likely) a recurrence appears. At that point we make a plan based on what is found...
I don't feel comfortable with this plan, I want to stay ahead of this. I want to start reaching out to various clinical trials of any phase and see what makes the most sense. Dr. Butowski leads much of the research at UCSF and has seen many trials do nothing and/or have very negative side effects on patients so he is more cautious than other NOs. I know this is something to be thankful for, but also very frustrating.
I would like to setup a consultation with another NO from a leading brain tumor center anywhere in the world to sit with and run through our situation for as long as I can get. I would love if members from around the world could list NO's they admire and respect.
Might actually be worth developing a shared Google Sheets for Stephen W Library listing all NO's with forum members ratings/opinions.
Any advice is appreciated.
Thank you and never give up