How Have Your Glioblastoma Experiences With Temozolomide Been?

My husband is 58 and was diagnosed in Sep of this year, he had a large tumor removed , about 97%, he is going into his fourth week of radiation, and is taking the TMZ , he has had a good deal of constipation with it but no other significant symptoms. He was offered optics therapy while continuing TMZ today by his oncologist. We are interested to hear your responses to the questions posed above in order to make the right decision for us.

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.

I would like to hear more about your experiences. I am currently on the post op TMZ and Optune device. I also had the post op TMZ with radiation. fatigue is my greatest side effect.

My 79 yr old husband was diagnosed with 2 brain tumors. Large one removed and smaller one inoperable. Also discovered glioblastoma had gone to his liver which is rare. We are one week into radiation and chemo (temolozide)). Dr say chemo should help with liver. Anyone else have this problem?

My husband has just been diagnosed with Right frontal lobe glial neoplasm. He had no symptoms except one day while out had a small dizzy spell. Doctors want to do radiation and chemo on a non-opera tumor. Only side effects he had was after biopsy to his left side but had improved. I’m questioning the chemo (pills) part. He starts radiation and chemo 10/30/24. He was a very active and healthy 82 year old. I wonder to save he’s body of the side effects from chemo would be more humane.

My husband has just been diagnosed with Right frontal lobe glial neoplasm. He had no symptoms except one day while out had a small dizzy spell. Doctors want to do radiation and chemo on a non-opera tumor. Only side effects he had was after biopsy to his left side but had improved. I’m questioning the chemo (pills) part. He starts radiation and chemo 10/30/24. He was a very active and healthy 82 year old. I wonder to save he’s body of the side effects from chemo would be more humane.