Recommended Institutions, Neurosurgeons, Neuro-oncologists

It occurred to me that we need a listing of preferred institutions and doctors by general area.  I'll start with a few suggestions of my own, but please add your nominees in the comments and I'll edit the list accordingly.  Once we get a good list going, I'll make a page out of it for easy reference at the top of the blog.

NORTH AMERICA - WEST

Institutions: UCLA (Los Angeles), Cedars-Sinai (Los Angeles), UCSF (San Francisco), Swedish Medical Center (Seattle)

Neurosurgeons:  Linda Liau (UCLA), Mitchel Berger (UCSF), Keith Black (Cedars-Sinai), Charles Cobbs (Swedish), Brian Toyota (Vancouver, Canada),

Neuro-oncologists:  Timothy Cloughesy (UCLA), Albert Lai (UCLA), Santosh Kesari (John Wayne Cancer Institute at Providence Saint John's Health Center), Jethro Hu (Cedars-Sinai)




NORTH AMERICA - EAST

Institutions: Duke University (North Carolina), University of Florida (Gainesville), Dana-Farber Cancer Institute (Boston), Beth Israel Deaconess Medical Center (Boston), Massachusetts General Hospital (Boston), Cleveland Clinic, Memorial Sloan Kettering Cancer Center (New York), Johns Hopkins Hospital (Baltimore)

Neurosurgeons: Allan Friedman (Duke), John Boockvar (Lenox Hill Hospital, New York),

Neuro-oncologists: Roger Stupp (Northwestern), Eric Wong (Beth Israel Deaconess), Benjamin Purow (University of Virginia)



EUROPE

Institutions: German Cancer Research Center - DKFZ Heidelberg

Neuro-surgeons: Hugues Duffau (Neurosciences Institute of Montpellier, France; supratotal resection of low grade gliomas)

More progressive NO in Los Angeles

All -

I was just cleaning out my pile of notes from the UCLA Brain Tumor Conference last March.  I spoke with Dr. Albert Lai albertlai@mednet.ucla.edu;  310-825-5321 after his lecture and he said that he generally will prescribe something for GBM if the patient asks about it.  I know some of you ran into hurdles getting a NO who would give you some of the cocktail meds.  I believe Dr. Lai is open minded.  Also I had asked about seeing my Dad via Skype as we are in Seattle.  He said that he had never done that before but it may be an option.

Just wanted to share that with you as I know some folks have had trouble with their Oncologists.

Best.
Annie

Imaging protocols

Stephen

Do you know much about the efficacy of various MRI protocols?  Specifically Swedish likes to use perfusion studies, UCLA didn’t have much to say about perfusion studies but likes F-DOPA PET ( I realize a PET is not an MRI), MD Anderson seems to like MR Spectroscopy.  Then there is field strength.  Swedish uses a 1.5 Tesla field strength and MD Anderson is 3 Tesla.  I forgot to ask UCLA what they were using.  Any research you know of that suggests one approach is best?  Or is it more likely that each has much to offer and it’s a matter of preference with each institution.

By the way, we had our appointment at UCLA.  We were supposed to meet with Dr. Cloughesy but he was busy so we met with Dr. Lai.  We were very impressed.  We will be switching to UCLA from MD Anderson.  We are impressed with MD Anderson as well, they are just not open to other approaches, including Optune.  UCLA is neutral on the cocktail approach, but encouraged us to continue with what we are doing because Jeremy is responding so well. 

Mike