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Has anyone else with IDH-mutant diffuse astrocytoma, grade 2?

Brain Tumor | Last Active: Oct 2 10:14am | Replies (42)
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@taylorstrona

Hi! I am following up with you, as I have same diagnosis and am in turmoil about whether or not to take Tibsovo. Was just hoping maybe we could connect and I could get an update from you on what you decided?

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Replies to "Hi! I am following up with you, as I have same diagnosis and am in turmoil..."
joesimmons | @joesimmons | Sep 26 7:22am

I was on Temozolomide (TMZ) and my symptoms got so bad by the 10th cycle (stabbing headaches, mass-confusion, very hard to walk, light headed, etc) that The Neuro Oncologist suggested we stop chemo. Something else is wrong in my head and nerves and nobody can tell me what it is. So now trying Gabapentin for the head pain but it seems to be "focusing" the symptoms and making them worse. Because why not? Next stop is my original Neurosurgeon and hopefully a new path.

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workinprogress | @workinprogress | Sep 27 9:33am

Hi Taylorstrona,

I have decided not to take the Tibsovo at this time due to no changes noted on many 6 month follow-up scans—for a years at this point. I was so stressed tying to make the decision that my neuro-oncologist said not to do for now. Of course if the MRI ever indicates change then will start the medication. Would probably take the Vorasidenib—I believe that is the one studied specifically for the IDH1 mutation.

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Colleen Young, Connect Director | @colleenyoung | Oct 2 10:14am

@taylorstrona, how are you doing? Did you and your team decide on next steps for treatment?

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