How Have Your Glioblastoma Experiences With Temozolomide Been?

Posted by Mark Stopyro @markstopyro, Jul 11 10:44am

Has anyone decided to opt out of the 6/12 months, 5/23 days option for taking temozolomide (TMZ) in (generally) a dosage 2X the dosage you received during a radiation + chemo treatment? Alternatively, has anyone sometimes wished that the the post radiology + chemo TMZ usage had been skipped?

My reading through web posts and Facebook groups related to glioblastoma, I have encountered some messages and responses which sometimes describe negative results and regrets about taking the follow-up TMZ. I completed the radiology/chemo but for now I'm holding off on the TMZ followup. I believe passing on the follow up TMZ will likely lead to a shorter life, but a higher possibility of a sharp and rapid decline and death. No guarantees, just a gamble, right? I must admit that among glioblastoma sufferers, I am randomly blessed with relatively little suffering thus far (diagnosis Feb 02 2024, resection Feb 27). Given 2 tumors, one unresectionable and the other resectioned about 80%, relapse could be pretty darned soon. I'll share more if anyone wishes to hear more on my experiences with it.

Interested in more discussions like this? Go to the Brain Tumor Support Group.

butterbutt | @butterbutt | Nov 13 8:01pm

I was diagnosed with that same cancer they told me nothing was not going to help me not even surgery for my brain cancer I was diagnosed with glioblast 3 4 years ago . I died and God and doctors bought me back I was doing well . Now all a suddenly my hair falling out again and I feel it's coming back worse this time I have a doctors appointment coming up in December 2024. Told me all they could do is make me comfortable.