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.

ruthannray | @ruthannray | Jul 12 6:38am

My husband was diagnosed with an inoperable Glioblastoma in October 2023. He completed radiation by Dec 4 and is finishing cycle 8 of Temodar today. His biopsy did not yield results about MGMT status. His tumor is now almost invisible. He has experienced no pain or seizures. He has some permanent vision loss. While he has a side effect of fatigue, he has no nausea at all. He tolerates the chemo incredibly well. And he is almost 87.

You will know pretty quickly if the chemo is effective. If not, you can discontinue anytime.

Now, he has some cognitive decline, happening prior to the tumor’s existence. That is probably worse as a result of the radiation therapy. But he is enjoying quality time now, and happy about continuing the chemotherapy treatment. It may continue up to 12 cycles if the tumor continues to respond.

Every one makes their own decision about treatment. I might not make the same decision he has, but he is capable of making the decision and it is consistent with his previously expressed wishes in his health care directive. As it should be. We wish you the very best.