Has anyone been to Duke Brain Tumor Center?

wifeholdingon · Regular Joined: 08 Sep 2005 Posts: 10

Does any one have any information or experience with Duke University Brain Tumor Center in Durham, North Carolina? We are being sent there and I would love to talk to someone who might tell us what to expect.

kathylynn · New User Joined: 28 Sep 2005 Posts: 5 Location: Florida

Yes, I went there with my son David. Visit: www.caringbridge.org/fl/david

I saw Dr. Gururangan....he's pediatric though. I spoke to Dr. Friedman, he's suppose to be 'THE' doctor to see....he called me right back and was so kind and informative and he put me with Dr. G because of my son's age.....Dave had been on protocol that did not work for his brain cancer...temador, however I hear with others it has been awesome...Dr.G started Dave on a different protocol and Dave gets MRI's every 6 weeks...this has been since 9/04 this time around...so far, clear MRI's...I know alot of folks who will only go to Duke. You're in good hands. My prayers are with you.
Kathy Cummings-mom to David Fitting GBM

wifeholdingon · Regular Joined: 08 Sep 2005 Posts: 10

I appreciate so much hearing from someone who has been there. We are so of in a holding pattern to go. We are waiting on another MRI to be done here where we live then we take that with us to go. My husband has a GBM that was removed once in May - complete resection. He too was on Temodar and completed radiation but on the MRI on Sept 1st they found what they believed to be a reoccurrance of the tumor. However, he has no symptoms whatsoever. He feels completely fine. Dr. Friedman has asked for another MRI to compare the 3 weeks time to see if it has grown or changed. We are told we will be going down for a 2 day appt as soon as we can bring the MRI. I really don't know what to think. Thank you so much for your assurances.

kathylynn · New User Joined: 28 Sep 2005 Posts: 5 Location: Florida

Dear Wifeholdingon,
It's great your husband had a complete resection the first time! My son did also...and yes, it was a blow when it grew back the second time, his was very apparent in the MRI, however, attitude has so much to do with how you approach cancer....it's overwhelming, your life is different, some of your dearest friends just don't 'get it'....and at times you feel like your an island....but hold on, you're in great hands with Dr. Friedman and just know, you are both doing everything you possibly can do. My son was given 3-4 months to live the second time, which was May 2004.....it's almost October 2005....no sign of tumor regrowth...I'm certainly not in la-la land about GBM, however I like to live in the moment while we can...try going to: Young Survivors of Glioblastoma.......I did this thinking it would put me in touch with pediatrics....it's more for adults though.....but a very promising, upbeat site. There are survivors out there! Just know you're going to a great facility with awesome doctors......that's all you guys can do right now. Well, I have a client at 1 pm so I must get ready for work. God Bless.
Kathy-mom to David-GBM

kathylynn · New User Joined: 28 Sep 2005 Posts: 5 Location: Florida

Dear Wifeholdingon....one more thing I forgot to mention...when my son had his second surgery (Miami Children's Hospital) the doctors implanted 8 gliadel wafers in the cavity where the tumor had been removed again....these are chemo wafers which, due in part to the blood barrier of the brain...many chemo treatments are questionable as to if they break through the blood barrier.....these wafers are placed inside the area so they don't have to cross any barriers.....I always felt that I had that extra reassurance with this procedure......might want to explore it with Dr. Friedman....good luck.
Kathy

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