How Have Your Glioblastoma Experiences With Temozolomide Been?

Posted by Mark Stopyro @markstopyro, Jul 11, 2024

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.

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butterbutt | @butterbutt | Nov 13, 2024

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.