Best hospitals for GBM

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Best hospitals for GBM

by ravirajagopalan on Thu Feb 23, 2012 03:45 AM

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Hi all, this is something I have been trying to figure out but with so many variables there seems to be no consistent answer. Maybe this forum can help? The hospitals most commonly mentioned for GBM treatment are Duke, UCSF, M.D. Anderson and Sloan Kettering. Wondering what the readers in this forum feel based on their experience. My wife has been diagnosed with GBM last September and I am consuting with UCSF. She has had surgery, radiation + chemo and now started adjuvunct chemo. She is on a standard treatment. Duke has a reputation of being more aggressive on treatment. But all in all, seems that the variables such as the tumor location, age, specifics about the patients play a bigger role. Any good reason to choose  one of the above mentioned hospitals - or a different one?

RE: Best hospitals for GBM

by distancerunner on Thu Feb 23, 2012 04:08 AM

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My wife went to MD Anderson for 2 and a half years and it was FANTASTIC!!!!!!!!!!!!

Until, I just had too much trouble getting her there...Once in her condition, she TSAat the Houston airport had to empty out an entire womens bathroom to let me in, where I scooted under the stall that she was in because she couldn't get off the stool or figure out how to get out.

It was gut wrenching to try and find anotherr place, but in the end found Barrow Nurological Institute, to do her scans and try to figure out all the other neurological things like the necrosis that went wrong.....

I sure liked MDA and I hope my wife and i chose well in in going to Barrows which is closer..they seemed like GREAT people in the initial consultation.

RE: Best hospitals for GBM

by jon4156 on Thu Feb 23, 2012 07:03 AM

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If possible, I think attending a facility that has an active oncology department performing work with brain tumors is advisable and preferably a teaching hospital or one that has an active research department.  All the hospitals you named are considered TOP facilities in the US.  Because of the nature of GBM, I suspect all of these facilities are likely to recommend the same standard treatment for your wife, at least as a starting point.  Treatment options may vary if standard treatment fails, or certainly if complications arise with the patient reactions to standard therapy.

 

RE: Best hospitals for GBM

by lsmith on Thu Feb 23, 2012 01:37 PM

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My husband (will be a 9 year survivor in May) and I went to Duke.  We love them!  They are agressive, but kind and listen to what you have to say.  When my husband wanted to end chemo early because he didn't feel he needed it anymore, they backed him on it.  They have always been supportive of our diet an lifestyle changes.

Regardless of what you decide to do, be your own advocate.  do your own research. Look at alternatives.

Healthy Blessings,

Lauren

RE: Best hospitals for GBM

by distancerunner on Thu Feb 23, 2012 01:56 PM

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I would say make sure that the "oncologist" that you get is a "neuro"-oncologist.

There are several places in each region that have these type oncologist..

I used a neuro-oncologist to set the protocol then went back home and let an "oncologist" monitor the treatments..

of course, our plan didn't work and unlike the lady who has a 9and a half year survivor husband..I hope my wife dosen't last that long in her current condition..she is a 2 and a half year "survivor".

 

good luck

RE: Best hospitals for GBM

by siblingof on Thu Feb 23, 2012 03:12 PM

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Those are all good places. Eventually the travel is going to exhaust you. We go to a large teaching hospital in our state that isn't considered a brain tumor center, but has a neuro-oncology department. The doctors there have worked in the past at the major brain tumor centers you mention, and though we went through a stage of researching the major centers and asking our doctors about everything that was going on there, we ended up realizing our current doctors were up on the latest research, very kind, and only two hours away from us. [wish I could do paragraph breaks on this thing] Your wife's treatment plan is probably going to remain unchanged as long as she doesn't get a recurrence anyway, and she probably won't be eligible for an experimental treatment while she's in the midst of standard treatment with no recurrence. Of course, if you haven't got a neuro-oncologist, disregard everything I just said and, yeah, get to a major brain tumor center... [consider this another paragraph break please] In addition to the factors you mentioned, the genetic makeup of the tumor makes a big difference in survival. We are great believers in diet and some folks are great believers in other things, but I asked one of our doctors recently if all long-term survivors had the IDH gene mutation. He said "Not all! Not all, by any means!" "But most?" I said. "Well, yes, most." [paragraph break] We do not.

RE: Best hospitals for GBM

by HelperM on Fri Feb 24, 2012 05:09 AM

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All of these hospitals are good.  Many other university/research hospitals are also good.  If you are located close to UCSF, I personally would stick with it unless there is something that appears uniquely suited to your wife's situation elsewhere.  I have heard of cases of people who traveled long distances for a particular treatment and then when they were back home, they were at the other end of a telephone if a problem came up, rather than having the needed expertise close at hand.

The main thing is to make an informed decision that both you and your wife feel comfortable with.

RE: Best hospitals for GBM

by johngiustino on Sat Feb 25, 2012 05:32 AM

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I would also consider UC San Diego who has a specialized neuro-oncology unit. I started my journey at different local hospital without such a specialty and let me tell you that it is a world of difference.  Dr. Kesari who runs the UCSD program is a strong believer in using the biomarker approach to finding you the best treatment/clinical trial.  I have been impressed not only by their specialized MRI protocols but also their overall treatment of the adjunct problems that come with GBM: seizures, fatigue, memory loss, insomnia, etc...  I know of a fellow UCSD GBM patient that consulted with many of the big name hospitals you mentioned and from what I understand they acknowledged the UCSD program as being top notch.  I feel I am in excellent hands.

Best of luck in your search,

JG

RE: Best hospitals for GBM

by ravirajagopalan on Sat Feb 25, 2012 09:03 AM

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Hi JG, thanks. Actually we did go down and visit Dr. Jessel at UCSD and I was very impressed by his enthusiasm as well. We went down to evaluate a specific clinical trial which my wife decided not to pursue. We were too late for the ICT trial. I agree that his facility is world class - we decided for now to stay with UCSF because it is Aldo world class and local. Dr. Kesari is vet knowledgable and committed. Regards, Ravi

RE: Best hospitals for GBM

by Cristiana on Sun Feb 26, 2012 12:40 AM

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I would vividly recommend Mass General in Boston . Harvard Medical School, Dana Farber, All centers connected, reserachers , wonderful caring doctors. A must go ! The very best, always Cris
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