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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.

butterbutt | @butterbutt | Nov 13 8:01pm

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.

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nancyhafer | @nancyhafer | Nov 11 10:46am

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.

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nursed3251 | @nursed3251 | Nov 11 6:43am
In reply to @nursed3251 "He had 3 treatments and now we are starting a full week of treatments. I noticed..." + (show)
@nursed3251

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 ❤️

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

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jimbasin88 | @jimbasin88 | Nov 10 9:08pm
In reply to @colleenyoung "@jimbasin88, that's a tough blow. I know this sounds weird to say "it's good", but it's..." + (show)
@colleenyoung

@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?

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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.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 10 9:00pm
In reply to @jimbasin88 "Within 70 days of completing TMZ & radiation, I had tumor regrowth. About to have my..." + (show)
@jimbasin88

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

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@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?

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1 reply
jimbasin88 | @jimbasin88 | Nov 10 4:11am

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

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1 reply
nursed3251 | @nursed3251 | Nov 4 9:37am
In reply to @colleenyoung "@nursed3251, how is your husband doing with treatment? How often does he get radiation and chemo?..." + (show)
@colleenyoung

@nursed3251, how is your husband doing with treatment? How often does he get radiation and chemo? How are YOU doing?

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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 ❤️

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1 reply
mirren1 | @mirren1 | Nov 4 3:45am
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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GBM methylated idh wildtype this year. On the temo 5/23 days now. Love to all my fellow GBM- ers.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 3 8:26pm
In reply to @nursed3251 "Thank you hubby starts radiation and chemo Wednesday. I pray everything goes well." + (show)
@nursed3251

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

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@nursed3251, how is your husband doing with treatment? How often does he get radiation and chemo? How are YOU doing?

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1 reply
thomhorowitz | @thomhorowitz | Nov 2 9:42pm
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.

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My fatigue was associated with the anti seizure Rx. Go8ng to a long acting night time dose helped. I opted to go to a lower TMZ dose for a longer duration. Feeling fine

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