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How Have Your Glioblastoma Experiences With Temozolomide Been?
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.
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I find the tmz very tolerable. I do take a zofran 30 min before each dose.
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2 ReactionsBill 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.
I was diagnosed last August. They found 3 spots. 2 of them were inoperable. I’m still on Optune and chemo 5/23. My Optune use age ranges 85- 92 each month. One spot is gone and the other spot is smaller. It hasn’t been the best dealing with glio, but I manage. I throw up every month with the chemo pills. My doseage is 250. Hope this helps . Take care, Kim
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1 ReactionAnyone else using th optune device with this Rx?
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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1 ReactionSo 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
You are correct. Being MGMT positive is generally favorable. My original post was mostly corrected. Thanks for the catch!
Good luck with your treatments!
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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3 ReactionsGreat share…yes interested in more posts
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.
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