ANY ONE HAVE OLIODENDROGLIOMA

General discussion including use and side effects of various medication/therapies, and "what do I do now?"
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KELLE
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Joined: Fri Jan 07, 2011 1:59 am

ANY ONE HAVE OLIODENDROGLIOMA

Post by KELLE » Sun Oct 09, 2011 11:45 pm

ON RIGHT TEMPRAL LOBE?

NLeslie
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Joined: Wed Apr 21, 2010 7:06 am

Post by NLeslie » Tue Oct 25, 2011 5:48 am

my husband has a pure oligodendroglioma and does have the 1p/19q deletion. His though is located in the Right frontal lobe high and towards the paratial lobe...(they say located in the motor track area). you can see my original posting with his history. I can tell you right now after some ups and downs this year of him deciding to try and stop taking his seizure medicine (keppra) we are back to a normal stable state. His tumor his still in a remissive state and has not grown since June 06' ... there are more hyperintensities that are seen in two planes of his MRI but not three .. and we're still in a wait and watch method. My husband is trying to lead a positive happy life with health and taking Vitamin D3 and omega 3... he also took for several years a Mannatech product made from the Aloe plant...all natural sugars and immune system supporter.
He is doing very well at this time...mind is bright and his energy level is better than it has been in the last couple of years. He is also working fulltime and enjoying life. He is now as of last month a 6 year survivor of a Grade II pure Oligodendroglioma that was the size of a golf ball... now is like a pecan nut size after debulking surgery in Dec 05' and 12 rounds of Temodar in 2006 after healing from surgery. NO radiation has been taken to date...

b2kpow
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Location: MI

Post by b2kpow » Fri Dec 30, 2011 2:25 pm

I was diagnosed in October had surgery 5 weeks ago...I do have the chromosome deletion as mentioned by previous post...It was in my right temporal lobe almost behind eye but not that deep. Biopsy showed grade 2. I am off work for another 2 weeks..next MRI in Feb. Only med I am on still is seizure meds (have never had one, just precaution) I am off steroids and pain meds..has been better then expected recovery ( I am a nurse and expected much worse just from the patients I have seen) Good luck

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