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by Idaho on Tue Oct 04, 2005 12:00 AM

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Has anyone out there have any experience with a grade 3 ogliodendroglioma. My husband was diagnosed in may 2005 and we have went thru 3 surgeries radiation and 42 days of temodar. Next he starts the 5 days a month of temodar but they are doubling the dosage. Anyone with some insight into this disease would be great. My husband just doesn't seem to be the same person he was six months ago and i dont know if that is normal or not. I would appreciate your input. Becky

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by Garland on Thu Oct 06, 2005 12:00 AM

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Becky... You and your family will be in our thoughts and prayers daily. I'm GBM Patient so i don't have direct experience with your husbands tumor but the double dose of temodar is standard for us. Sounds like he is getting the standard treatment...and..i know this is trite but you will just have to be patient. He will get better, more like himself. Its just gonna take some time.

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by Garland on Thu Oct 06, 2005 12:00 AM

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go to www.cksociety.org

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by Idaho on Tue Oct 11, 2005 12:00 AM

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Thanks for your encouragement. This just seems to get more difficult by the day. One day he seems like he is getting better and then they have us sitting in the er because he is running a fever for days at a time. But they never want him admitted. It seems ridiculous if you ask me.

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by Angelmom on Fri Oct 21, 2005 12:00 AM

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Hi Becky, my mom has an oligodendroglioma 3...had surgery in May 2005, one round of tomotherapy radiation and chemo both for 6.5 weeks. Now she's doing the 5 days on, 23 off and will start her next "set" on Monday. Her dosage for these rounds is a lot higher than the original dose, too. While no tumor is good to have, everything I've read and heard from the experts is that this type of tumor has a better reaction to treatment. My mom is finally starting to be her old self again. She's no longer on decadron or depakote, which I think is a big influence on her personality, etc. She recently had a stay in the hospital b/c of DVT, or deep vein thrombosis and pneumonia; both which can occur when someone isn't active enough. Keep your eyes open for that. Hang in there...be patient, and most of all, enjoy every minute you have with your husband. I know I do with my mom! Dora
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