Dana-Farber/Brigham and Women's Cancer Center in Boston, Massachusetts pools the resources of two institutions physically adjacent and joined by bridges. This is a NCCN cancer center with a sarcoma team. Below are some links where you can download maps and patient handbooks, get phone numbers, etc.
Online Consultation Dana-Farber has an option for sarcoma specialists to review your records, your history provided by your local dctor, and provide an opinion regarding the next treatment steps. This is described at the following link: http://www.dana-farber.org/pat/becoming/partners/default.html Note that this is not available from a few states and some non-USA countries.
Sarcoma Team link: http://www.dana-farber.org/pat/adult/sarcoma/treatment-team.html
James Butrynski, MD
George D. Demetri, MD (not taking new patients)
Suzanne George, MD
Jeffrey Morgan, MD
Andrew Wagner, MD, PhD
Monica Bertagnolli, MD
Chandrajit Raut, MD - You can contact his secretary Kathleen, with any questions --her phone # is 617-525-8476
Harvey Mamon, MD PhD his webpage Dr. Mamon has used stereotactic radiation treatment for poorly situated GIST of the liver and other locations.
Copied with permission: Bonnie Girard wrote: I had surgery last August (2007), at B&W in Boston. My surgeon was Dr. Raut and he saved my life. I lost 40 units of blood but he was ready because he knew that GIST tumors are bleeders. What he did not know was that I was bleeding inside when he opened me up. I feel very lucky to have been in excellent hands....
Copied with permission: The WIKI is what brought me to Drs Demetri and Raut in the first place!
Dr Raut was my surgeon too, on Dr Demetri's recommendation. My surgery was a lot less complicated than Bonnie's, but I thought he and his colleagues were terrific... Plus, his office is staffed by incredibly kind and helpful people who intercede for you when Blue Cross decides not to approve PET scans, etc.
Good luck!!! Nancy in California
Copied with permission: Leave my name and email on it so people can contact me if they want to! We would be happy to speak to them! One person has already and we are going to speak to them this weekend as their surgeery is next Friday. Wendy Kapiloff Wkapiloff@aol.com
Just have to chime in here also about Dr. Raut! My husband had a liver resection done by Dr. Raut. We are from Atlanta and chose to go to Dana Farber! He and all of the team were wonderful. Beyond expectations!! Len had a few complications so we were in Boston for almost a month between hospital time and hotel time but they were there with us all the way. AND, once we came home, we had contact with Dr. Raut, his P.A., Michelle, Dr. Butryinski and his PA, Bonnie Dirr by phone and email whenever we needed. If I paged them, they got back to me within minutes!! Yes, you are all reading this correctly! Just thought you would like to know our experiences at our home away from home!
Dear Donna, You have my permission to include/edit anything that I wrote regarding Dr Wagner on 1/22 or in my post today . I don't mind if you want to include my name or email. Sandy - Wigglegood@aol.com
I see Dr. Andrew Wagner at Dana-Farber and I just love him. I originally had a meeting with him when I was planning to join the Gleevec trial 8/06. Then I found that I have another GIST and could not be a candidate. Dr Wagner is very thorough and is very accessible and is very involved with the trials. He is on a team with Dr. Demietri and Dr. George. My appointments usually last almost an hour and he never appears to be rushed....which is very unusual. I would definitely suggest him to any GIST patient. I feel very secure that I am in good hands. Good luck to you.
I am located in Canada and had trouble finding any local expertise. I live in Montreal, which is only a 5 hour drive from Dana Farber in Boston. I wanted their expert opinion, but my intention was to follow their recommendations in Montreal with my local Oncologist. Although I chose to drive down to Boston, they offered to review my pathology and scan results and then deliver their advice over the telephone. I traveled there anyway because it was so close, but in reality, I didn't have to, since they didn't run any additional tests when I was there.
Maybe a phone consult is your best option, and might get you their excellent advice a lot quicker. All you have to do is send them blood tests, CDs of CT Scans, biopsy slides (they'll return the slides to you)/reports and whatever other records you have.
I had an appointment within 2 weeks of contacting them. The cost so far was $230 for re-examining the pathology slides, plus a $1000 deposit for the consult. I'll probably get some of that $1000 back, but even if I don't, I consider $1230 pretty good value for the advice and the peace of mind I received.
Charles in Montreal
DR. WAGNER at Dana Farber..... He spent time in explaining my particular subgroup of the exon 17 and he assured me that having the exon 17 as my primary mutation does not mean that I will be resistant to these drugs. He also discussed several new drugs that are now in trial or will be in trial. He is just absolutely wonderful. If any of you need a GIST specialist and can travel to Boston, he definitely is the one to see.
If I was going to find a 2ND in Command for my "Army", so to speak, he or she was going to be the best damned one I could find. So, we saw Dr. SUZANNE GEORGE, a member of Dr. GEORGE DEMETRI's team at DFCI. First, she confirmed the GIST diagnosis. Her plan? "Immediately start Gleevec. Treat my GIST as a chronic disease rather than a terminal one. Hope the research keeps up and I outlive my cancer." LOVED that plan. LOVED her! This General had a 2ND in Command