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Has anyone else with IDH-mutant diffuse astrocytoma, grade 2?
Brain Tumor | Last Active: Oct 2 10:14am | Replies (42)Comment receiving replies
Hello! I am two weeks out from a surgery to remove a brain tumor that was the size of a golf ball. 80 percent of my tumor was removed and I haven’t had any neurological or physical issues. I had 2 seizures which lead to my diagnosis. After looking at the biopsy I have a grade 2 astrocytoma that has the IDH1 mutation. Is there anyone that is on the new medicine that is specifically for tumors with the IDH1 positive mutation?
Replies to "Hello! I am two weeks out from a surgery to remove a brain tumor that was..."
I am not sure if this would be a possibility for you, I have the same cancer. I completed 34 days of proton beam radiation at Mayo in Rochester and now I am taking Tibsovo instead of Chemotherapy (I did not have surgery). I have minimal side effects and the tumor has stopped growing. The drug is not FDA approved however works much better (as far as side effects go) than chemo. I am not sure if this right for you, but it seems like it might be something you can check into or ask your Doctor. Take care.
My daughter-in-law had the same Grade 2 astrocytoma removed almost 3 years ago. She goes to MD Anderson every 3 months for scan to monitor new growth. Her doctor there has suggested she can take Ivosidenib (FDA approved for other cancers) or wait for Vorasidenib (not FDA approved yet) that is specifically designed for brain tumors and showing promising results. Has anyone tried this drug?
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Hi@alhayes1976, I'm tagging fellow members @aworriedmom @shell68 @taysuz @aa3 @joesimmons who also have experience with an astrocytoma and IDH1 mutation.
Al, what treatment beyond surgery is being suggested for you?