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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.

2cats | @2cats | Oct 25 9:46am

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?

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1 reply
pnf24 | @pnf24 | Oct 26 10:23am

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.

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2 replies
nursed3251 | @nursed3251 | Oct 27 1:16am

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.

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2 replies
pnf24 | @pnf24 | Oct 27 2:59pm
In reply to @nursed3251 "My husband has just been diagnosed with Right frontal lobe glial neoplasm. He had no symptoms..." + (show)
@nursed3251

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.

Jump to this post

Of course each of us is different but I’ve truly only experienced mild fatigue and “chemo brain”. I am halfway through my TMZ and Optune treatments. Hoping the next 3 months goes as smoothly as the first 3

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naoj | @naoj | Oct 28 10:41am
In reply to @nursed3251 "My husband has just been diagnosed with Right frontal lobe glial neoplasm. He had no symptoms..." + (show)
@nursed3251

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.

Jump to this post

My 75 year old husband has glioblastoma right frontal lobe diagnosed in May. He had tumor removed, radiation, chemo, and Optune. He is on his forth month of chemo-TMZ and has had few side effects from the TMZ (no nausea, some tiredness). Tough decisions for you. My husband's steroids and seizure meds are a different story with side effects.

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nursed3251 | @nursed3251 | Oct 28 11:30am

Thank you hubby starts radiation and chemo Wednesday. I pray everything goes well.

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1 reply
thomhorowitz | @thomhorowitz | Oct 29 3:23pm

I get. Little nausea on my 4th day on it. Otherwise I find it very tolerable. I am on it 5 days a month. 6 cycles down. Debating if I will go full year. Data seems to level out at 6 months. Optune device is my mill stone. Definitely limited activity with it hanging off me. Alarms twice a night and occasionally feels like burning coins on scalp. Medicare coverage is inconsistent. No real medical advisor at optune

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thomhorowitz | @thomhorowitz | Oct 29 3:29pm
In reply to @2cats "My 79 yr old husband was diagnosed with 2 brain tumors. Large one removed and smaller..." + (show)
@2cats

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?

Jump to this post

All my tumor was in right temporal lobe. Fully removed after 7.5 hrs in OR. Post op was fine, minimal pain. Radiation was uneventful. Just had 6 month MRI with no new findings. TMZ has been very tolerable. I need Zoran 30 min. Befor each dose

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thomhorowitz | @thomhorowitz | Oct 29 3:31pm
In reply to @pnf24 "I would like to hear more about your experiences. I am currently on the post op..." + (show)
@pnf24

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.

Jump to this post

My fatigue has been related to the keppra. On XL once a day and that has improved

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jeffeyjamed | @jeffeyjamed | Nov 1 4:24pm
In reply to @ruthannray "My husband was diagnosed with an inoperable Glioblastoma in October 2023. He completed radiation by Dec..." + (show)
@ruthannray

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.

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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.

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