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How Have Your Glioblastoma Experiences With Temozolomide Been?
Brain Tumor | Last Active: 1 day ago | Replies (51)Comment receiving replies
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.
Replies to "My husband was diagnosed with an inoperable Glioblastoma in October 2023. He completed radiation by Dec..."
what does MGMT mean
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.
GBM methylated idh wildtype this year. On the temo 5/23 days now. Love to all my fellow GBM- ers.
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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.