2nd year of Temodar for GBM: Should I expect worse side effects?

Posted by barbaraak @barbaraak, May 9, 2018

Hello, I am new to discussion groups and this is my first post. I was diagnosed with GBM in April 2017 at the age of 58. I had a total resection and then went through the standard treatment of Temodar, Radiation and 1 year of Temodar 5/23. Last week my doctor recommended I try a 2nd year of Temodar. I had MRIs every 2 months during first year and all of those scans have been stable. My blood work has been really good for the past 7 months.

I was given a 2 year life expectancy so decided to go with the recommendation. I am wondering if anyone has experienced any worse side effects during a 2nd year of Temodar? I’ve read that it could cause more brain fogginess and weight gain so was looking for other info.

Thank you,

Welcome to Connect, @barbaraak
I'd like to bring others into this discussion, like @lmp1 @myminnie @spangles @chuck58201 @jaxjo @dessi73 and @dawn_giacabazi, who have experience with Temodar (temozolomide).

You may also be interested in reading these related discussions:
– Side effects of Temodar https://connect.mayoclinic.org/discussion/side-effects-of-temodar/
– Glioblastoma Resection https://connect.mayoclinic.org/discussion/gbm-resection/

Barbara, what side effects have you experience with Temodar so far?


I have had a lot of problems with nausea and vomiting. I currently have 2 scripts for meds that I take several times each day I am on the temodar. I was experiencing problems with my red blood counts and platelets during the first 5 months, but I haven't needed any transfusions the last 7 months. And I always have a headache!!

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