1. < Brain Tumor

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.

pnf24 | @pnf24 | Oct 27, 2024
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

REPLY
nursed3251 | @nursed3251 | Oct 27, 2024

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.

REPLY
2 replies
pnf24 | @pnf24 | Oct 26, 2024

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.

REPLY
2 replies
2cats | @2cats | Oct 25, 2024

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?

REPLY
1 reply
thomhorowitz | @thomhorowitz | Aug 18, 2024

My fatigue is related to the keppra

REPLY
thomhorowitz | @thomhorowitz | Aug 18, 2024

I have found it quite tolerable. A little nausea n my third us dos.. all in all it breaks the stereotype of CHEMO.

REPLY
ruthannray | @ruthannray | Aug 17, 2024
In reply to @nancyhafer "Update and question. Bill just finished 6 months of 5/23 Chemo with no progression of tumor...." + (show)
@nancyhafer

Update and question. Bill just finished 6 months of 5/23 Chemo with no progression of tumor. Have decided to stay the course of 5/23 since he tolerates it well. Anyone decided to stop the 5/23 after 6 months?

Jump to this post

No. My husband also responded well to the standard of care 6 month treatment. He continued and has finished cycle 9. Next MRI in two weeks.
His fatigue has increased significantly in the last two months. We hope the tumor has continued to respond.

REPLY
nancyhafer | @nancyhafer | Aug 16, 2024
In reply to @nancyhafer "Bill was diagnosed in September and currently takes 425 mg of TMZ 5 days a month..." + (show)
@nancyhafer

Bill was diagnosed in September and currently takes 425 mg of TMZ 5 days a month along with nausea medication and a laxative. Only issue he has had is some trouble staying asleep and then exhausted for 2 or 3 days after chemotherapy. Walnut size tumor resection last October with only downside was a little more vision loss with peripheral vision causing issues with driving. Otherwise no progression of the cancer so far🤞🏻🙏🏻.No optune as he has some dermatitis on his scalp and figured it would drive him crazy.

Jump to this post

Update and question. Bill just finished 6 months of 5/23 Chemo with no progression of tumor. Have decided to stay the course of 5/23 since he tolerates it well. Anyone decided to stop the 5/23 after 6 months?

REPLY
1 reply
kpickowitz | @kpickowitz | Aug 14, 2024
In reply to @thomhorowitz "It is about quality of life. I have yet to get a full nights sleep with..." + (show)
@thomhorowitz

It is about quality of life. I have yet to get a full nights sleep with optune. Between battery changes and alarms, it has us up 4-5 times a night.

Jump to this post

My brother has had the same experience and has decided to forego using Optune because of all the disruptions

REPLY
thomhorowitz | @thomhorowitz | Aug 13, 2024
In reply to @naoj "My husband, David, has been on the Optune device for six days. So far so good...." + (show)
@naoj

My husband, David, has been on the Optune device for six days. So far so good. I am the primary care giver and have changed the arays twice (every 3 days ). It was not hard to do... a little nerve racking the first time. We found the training and support good and understand anything medical (i.e. skin irritation, headache, or other side effects) must be referred to our prescribing physician. No side effects thus far. The device is a lifestyle change for sure, but David has continued his morning runs with a backpack on. We are going to try practicing golf tomorrow to see if possible. He is 75 years old and used to an active life. Trying Optune is worth it for us if it provides an extension of life and maintains quality. Understandable that it is not for everyone.

Jump to this post

The rub is that sweat can effect the conductive jel. I need. To avoid direct sunlight on my head. Hat or umbrella help

REPLY
View MoreView Less
Please sign in or register to post a reply.