Glioblastoma

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Glioblastoma

by Mikki on Sat May 22, 2004 12:00 AM

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Please share any source you have found for people who have survived this tumor (though may be rare). Do they have anybody who has hit the 5 year mark on this for survival? My mother has this and was just diagnosed. She is older but basically a very strong woman but is now considering not treating it at all.

Glioblastoma

by Debi_H on Tue May 25, 2004 12:00 AM

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When you say Glioblastoma, are you referring to the brain tumor Glioblastoma? If so, I'd be interested in hearing other's experiences as well. Are you looking for a "source" of treatment or information? My 37 year-old husband was diagnosed with Anaplastic Oligodendroglioma (brain tumor) last fall. We are told it's very rare in this age group. I'm obviously extremely concerned about his prognosis, especially since we are the parents of 2 very young girls that adore their father.

Your Mom's Tumor

by Cludy on Tue Jun 29, 2004 12:00 AM

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Dear Laura: My sister was diagnosed in 2002 and had brain surgery within 2 days of the discovery of her tumor. It turned out to be a glio and she had the follow up radiation and chemo. Was doing well for about 1 year, but had a seizure last July as a result of the tumor coming back. We thought we had an option with the gamma knife (non-invasive) which is supposed to cut off the blood supply to the tumor. We were told she'd already had her lifetime quota of radiation, so the gamma knife wasn't an option. Wish we'd known it from the onset. Anyway, she had a second surgery which got most of the new tumor. She finally went to a hospital in North Carolina after her doctors in Dallas were pretty much at the end of anything they could offer. She's done well and is currently in a clinical trial. We have to keep our fingers crossed every two months when they review her MRI's and decide on a course of action. Wish we'd gone there from the get go as they seem to be the most progressive and aggressive fighters of this horrible tumor. I wish you the best of luck. I do know everything you're going through and your feeling of helplessness.

RE: Glioblastoma

by Xoiheartu192 on Thu Jan 04, 2007 12:00 AM

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I really want to know too. My father at age 49 was just diagnosed. I mean im only 14 and hes i dont know. I just wish i could do somthing or have some hope. Because everything i read or hear about is about a year and i cant imagine not having him around for christmas. Or christmas being harder than it was this year.

RE: Glioblastoma

by Promises on Sun Feb 11, 2007 12:00 AM

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My 50-year old husband was diagnosed with GBM in may '05.  Had one craniotomy. Went through radiation. Temodar didn't do anything for him, so he started on Avastin + CPT-11 every two weeks in Nov '05.  The tumor disappeared and his MRIs were clear of any growth for a year.  He had a recurrence in Dec '06.  We're having him tested for Tarceva right now.  Tried CCNU - no help. May try Gleevec + Hydroxyurea. Mark's quality of life was very good all the time he was on Avastin + CPT11.  A few seizures, some bouts of emotional lability which were not pleasant (left temporal lobe), but physically he was feeling real good.  He was tired for a few days after the infusion, a little bit of nausea, but no vomiting.  Everyone responds differently, but most of the folks that I have spoken to who tried Avastin had pretty dramatic results.

 

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