One patient with glioblastoma still alive nine years later
by dmercer on Fri Jan 13, 2012 08:17 PM
Diagnosed and surgery (90% resection) of Right Temporal Oligodendroglioma grade 2 in Nov 2010. 6 Weeks of Radiation and concurrent Temodar Spring 2011. 8 rounds into 5/28 Temodar. Wondering how long those of you with a low grade glioma stayed on Temodar as an initial treatment? My neuro Oncologist initially said 12 months seemed to be most common but Europe is 6 months and there are even folks here in the US who've done it for 4 years. It sounds like he may let me decide. I of course want his opinion, but curious what others have done. I really like the idea of being done, but if staying on longer is better, I'll do it. Just not sure the research is there. ANyone know of any studies?
Grace and Peace,
by karynk on Sat Jan 14, 2012 04:19 AM
When my husband's tumor was a grade 2, he only lasted on Temodar for 3 rounds. Between low blood counts and side effects he preferred to come off of it. That was in 2004, he followed his Temodar with 8 months of Accutane. His tumor finally upgraded to a grade 3 in 2007. There isn't a whole lot of research out there on what's best, as some Oligo's are only surgery, some are only RT and some are both and Temodar. Did they do the genetic testing on your tumor? I can try to see if I can find any studies in what I have, but I think most studies tend to be on PCV for the chemo drugs.
by SouthernMaryland on Sun Jan 15, 2012 03:53 PM
My son was on Temodar for about a year and a half for his Grade 2 Astrocytoma. He had 6 good years before his recent recurrence. (he had surgery which remove 95% of the tumor and the 6 weeks of radiation back then as well)
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