Monday, 3 July 2017

Getting Second Opinion - Planning for recurrence

Hi all,

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


Oakland, California


  1. This is a great idea, and a while ago I requested members of the blog to send in feedback concerning institutions and doctors.

    I had meant to create a page at the top of the blog listing these names and institutions, and that is still on the agenda, so thanks for the reminder that this kind of list is still needed.

    1. A google sheet in the References section of the library is also a great idea. I'll set that up.

  2. Ari: I endorse your plan... keep after it and be aggressive! I took my late wife to see Dr. Henry Friedman at Duke a few months after her diagnosis in 2015. She'd have returned to see him upon recurrence (he had nothing to offer until there was a sign of it), but she developed another unrelated cancer that same year. Dr. Friedman didn't endorse the "cocktail" at that time, but he had good options, potentially, with regard to trials. He called me directly when I reached out to Duke, and he was compassionate with my wife during our visit. Best of luck to you.

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  4. Ari, I think most people on this board aim to push ahead of 'standard of care' in the hopes of improving outcomes. There is validity to Dr. Butowski's pessimism though. I don't remember the exact numbers but was told something like 'out of 75 phase 3 trials for glioma, only 2 ended up with FDA approval'. So in some senses, failure is the norm.

    But I would say there is strong reason to hope:

    1) That is the typical statement from most NO's and it is partly bogus because it is a position that they are pressured to take for legal reasons -- treat using accepted SOC until SOC fails.

    2) Genetic testing is rapidly improving the ability to stratify patients for likelihood of efficacy. A major example is that for a long time alkylating chemotherapy for glioma was considered marginally useful, but now things like methylation and genetics show that it is extremely effective for specific patients.

    3) DNA editing using tools like CRISPR/CAS9 and rapid dna sequencing is only a few years old and is game changing. Not only in terms of the possibility of vaccine creation, but even for doing studies where turning on and off genes with ease makes studies incredibly more effective.

    4) The Internet! The capability for patients to review trials/studies/results/etc is huge.

    So dig in! Find a few of the most promising trials and get a review setup with the researcher. Even though you may end up not being accepted given that your wife's status is 'stable disease', you'll likely learn more details and get on researcher's 'radar' and thus have contacts in place. Plus you may find one that does apply now. Regardless it is valuable prep work for what is ahead.