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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.

thomhorowitz | @thomhorowitz | Jul 25 8:32pm

Anyone else using th optune device with this Rx?

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2 replies
ruthannray | @ruthannray | Jul 23 5:55am
In reply to @tomla "So if MGMT promoter methylation was not detcted is that good or not so good. I'm..." + (show)
@tomla

So if MGMT promoter methylation was not detcted is that good or not so good.
I'm still trying to figure things out.

thanks for your reply

Jump to this post

It is good to have MGMT promoter methylation. Not having it is not necessarily bad because there are other factors that impact the efficacy of the chemo treatments.

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tomla | @tomla | Jul 22 9:10pm
In reply to @ruthannray "Here is an explanation of MGMT: Resistance to alkylating agents via direct DNA repair by O6-methylguanine..." + (show)
@ruthannray

Here is an explanation of MGMT: Resistance to alkylating agents via direct DNA repair by O6-methylguanine methyltransferase (MGMT) remains a significant barrier to the successful treatment of patients with malignant glioma.

A biopsy reveals whether the tumor is positive or negative for MGMT via DNA analysis. Being positive for MGMT means the chemotherapy is moroe likely to be effective.

There are other, completely yet unknown factor(s), which also influence the effectiveness of chemotherapy per Dr. Sherman , our neuro-oncologist. The doctors know this because some people who are MGMT positive still respond favorably to chemotherapy. So, being negative is not a reason to forego chemotherapy in my (non medical person) opinion.

Jump to this post

So if MGMT promoter methylation was not detcted is that good or not so good.
I'm still trying to figure things out.

thanks for your reply

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1 reply
ruthannray | @ruthannray | Jul 22 6:50am
In reply to @pnf24 "According to my path report Mayo Clinic states: The therapeutic and prognostic implications of MGMT promoter..." + (show)
@pnf24

According to my path report Mayo Clinic states: The therapeutic and prognostic implications of MGMT promoter methylation status have best been studied in Glioblastoma. The presence of MGMT promoter predicts response to alkylating chemotherapy (i.e. temozolomide) and is a FAVORABLE (emphasis is mine) prognostic factor got patients with glioblastoma. Additional studies are needed to assess the clinical significance of the presence the presence of MGMT promoter methylation in other tumor types.

My own neuro-oncologist has told me several times that that the presence of MGMT promoter methylation is a good thing for me to have.
I just completed my 6 weeks of rad/temozolomide and am in my medication vacation. I had few side effects-primarily a bit of fatigue. I’m now celebrating at the beach! I will be discussing using the Optune device along with 6 more rounds of temozolomide.

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You are correct. Being MGMT positive is generally favorable. My original post was mostly corrected. Thanks for the catch!

Good luck with your treatments!

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pnf24 | @pnf24 | Jul 20 6:17pm
In reply to @ruthannray "Here is an explanation of MGMT: Resistance to alkylating agents via direct DNA repair by O6-methylguanine..." + (show)
@ruthannray

Here is an explanation of MGMT: Resistance to alkylating agents via direct DNA repair by O6-methylguanine methyltransferase (MGMT) remains a significant barrier to the successful treatment of patients with malignant glioma.

A biopsy reveals whether the tumor is positive or negative for MGMT via DNA analysis. Being positive for MGMT means the chemotherapy is moroe likely to be effective.

There are other, completely yet unknown factor(s), which also influence the effectiveness of chemotherapy per Dr. Sherman , our neuro-oncologist. The doctors know this because some people who are MGMT positive still respond favorably to chemotherapy. So, being negative is not a reason to forego chemotherapy in my (non medical person) opinion.

Jump to this post

According to my path report Mayo Clinic states: The therapeutic and prognostic implications of MGMT promoter methylation status have best been studied in Glioblastoma. The presence of MGMT promoter predicts response to alkylating chemotherapy (i.e. temozolomide) and is a FAVORABLE (emphasis is mine) prognostic factor got patients with glioblastoma. Additional studies are needed to assess the clinical significance of the presence the presence of MGMT promoter methylation in other tumor types.

My own neuro-oncologist has told me several times that that the presence of MGMT promoter methylation is a good thing for me to have.
I just completed my 6 weeks of rad/temozolomide and am in my medication vacation. I had few side effects-primarily a bit of fatigue. I’m now celebrating at the beach! I will be discussing using the Optune device along with 6 more rounds of temozolomide.

REPLY
1 reply
nancyhafer | @nancyhafer | Jul 20 11:20am

Great share…yes interested in more posts

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ruthannray | @ruthannray | Jul 20 7:17am

Here is an explanation of MGMT: Resistance to alkylating agents via direct DNA repair by O6-methylguanine methyltransferase (MGMT) remains a significant barrier to the successful treatment of patients with malignant glioma.

A biopsy reveals whether the tumor is positive or negative for MGMT via DNA analysis. Being positive for MGMT means the chemotherapy is moroe likely to be effective.

There are other, completely yet unknown factor(s), which also influence the effectiveness of chemotherapy per Dr. Sherman , our neuro-oncologist. The doctors know this because some people who are MGMT positive still respond favorably to chemotherapy. So, being negative is not a reason to forego chemotherapy in my (non medical person) opinion.

REPLY
2 replies
tomla | @tomla | Jul 19 11:27am
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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what does MGMT mean

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marybeths | @marybeths | Jul 16 12:56am

Friend,
I wish you the best, whatever you decide. My husband now age 73, was diagnosed in late March 2023 followed by surgery early April 2023 GBM stage 4. Following 6 weeks radiation, and a short break, we began Temodar. He tolerated relatively symptom free except for the first night of the first 2 cycles. (5 on 23 off)
He did not relish taking the "poison" but he wants to (and we want him to) explore every option to extend his life. I would say, take the anti nausea pills and don't wait till the nausea begins in the middle of the night. (Took us awhile to catch on. ) They should give you two kinds of anti nausea- one should be taken an hour before bed to combat nausea. The other one is if you are in the throws of misery from nausea. The Temodar pills pack a punch. We have now entered another phase of treatment which was to return to 5 radiation treatments (in two weeks) , and following is targeted infusion (which is chemo) every two weeks. Have just recently begun. God is not finished with him yet! Best to you! Sincerely Mary Beth Smiderle

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Mark Stopyro | @markstopyro | Jul 12 7:46am
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.

Jump to this post

Your response is positive and inspiring in spite of the deep sadness we all experience from GBM. I'm very grateful for your suggestion to try the chemo, and for your sharing about your husband's positive experience with TMZ.

I also have been experiencing almost no pain. I had a very minor seizure, really a tingling in my right arm and leg that lasted a while before getting back to sleep. My loving and very astute wife let me know we needed an ER visit that morning after I re-awoke and was disorganized in speech. The amazing ER immediately did an MRI set and sent me to a major medical center when they verified the tumor.

I had some negative experiences from the radiology/chemo cycle, but much was due to the rad. and possibly interactive effects between rad. and chemo. I appreciate your suggestion to try it, and discontinue it if negative outcomes are believed to potentially outweigh positive results. I was told my GBM was to some degree MGMT positive and this condition may help with the early effectiveness of the TMZ.

Thank you ruthannray for your sharing about your husband's experiences and your own suggestions.

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