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.

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

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.

lostokie | @lostokie | Dec 5, 2024

Just wondering if the resection of my brain would be enough?

thomhorowitz | @thomhorowitz | Dec 6, 2024

I am on an optune device and tmz 5 days a month. Doing well at 7 months. TMZ does drop my platelets, otherwise very tolerable

Colleen Young, Connect Director | @colleenyoung | Dec 16, 2024

In reply to @lostokie "Just wondering if the resection of my brain would be enough?" + (show)

Hi @lostokie, have you been diagnosed with a glioblastoma? Are you scheduled for surgery?

elliott5985 | @elliott5985 | 6 days ago

In reply to @ruthannray "My husband was diagnosed with an inoperable Glioblastoma in October 2023. He completed radiation by Dec..." + (show)

@ruthannray Do you know of any clinical Trials that may be available?

ruthannray | @ruthannray | 5 days ago

In reply to @elliott5985 "@ruthannray Do you know of any clinical Trials that may be available?" + (show)

@elliott5985
Mayo Clinic in Jacksonville was running several trials regarding radiation protocols. Temazolomide was the standard of care for chemo.
It’s been 3 years so those trials may be over.
Try calling 904-953-3588 and ask for information.
Good luck.