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.

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?

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

lostokie | @lostokie | Dec 5, 2024

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

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.

nancyhafer | @nancyhafer | Nov 11, 2024

Tumor came back in a different area after 12 months..it’s too deep to remove so started 10 treatments of radiation and then move on to Bevacizumab infusions every 2 weeks. Hopefully to slow the growth. Biggest challenge for Bill is constant worry and forgetfulness.

nursed3251 | @nursed3251 | Nov 11, 2024

In reply to @nursed3251 "He had 3 treatments and now we are starting a full week of treatments. I noticed..." + (show)

You put a smile on my face. Thank you ❤️😊

jimbasin88 | @jimbasin88 | Nov 10, 2024

In reply to @colleenyoung "@jimbasin88, that's a tough blow. I know this sounds weird to say "it's good", but it's..." + (show)

Early December. Apparently it’s not at all uncommon. You can have many craniotomies, depending on location/location/location as you well know. Mine is right frontal lobe. Not a “dangerous” area, and I’ve always been v. asymptomatic. I’m grateful.

Colleen Young, Connect Director | @colleenyoung | Nov 10, 2024

In reply to @jimbasin88 "Within 70 days of completing TMZ & radiation, I had tumor regrowth. About to have my..." + (show)

@jimbasin88, that's a tough blow. I know this sounds weird to say "it's good", but it's a good thing that a craniotomy is an option, right? When will you have the surgery?

jimbasin88 | @jimbasin88 | Nov 10, 2024

Within 70 days of completing TMZ & radiation, I had tumor regrowth. About to have my 2nd craniotomy in 2024 @ Stanford. I’m very disappointed.

nursed3251 | @nursed3251 | Nov 4, 2024

In reply to @colleenyoung "@nursed3251, how is your husband doing with treatment? How often does he get radiation and chemo?..." + (show)

He had 3 treatments and now we are starting a full week of treatments. I noticed his left arm started having tremors. I don’t know if it’s from the treatments. I’ll ask today if that is normal response. Me, I get tired but with God’s help he’ll give me the strength to get through this. It’s like having a small child again. Thank you so much for asking. Hope you have a blessed day ❤️