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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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@joesimmons

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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Replies to "I was on Temozolomide (TMZ) and my symptoms got so bad by the 10th cycle (stabbing..."
workinprogress | @workinprogress | Sep 27 9:37am

So sorry to hear all this. I have taken gabapentin off and on for a few years. I get headaches on the right ride of my head which is where my tumor was. They are sure ut is related but hard to not think so. I take Imatrx and Zopran when my hit. Then I put a heating pad on my head and neck—this does help ut can take 30-60 minutes which is frustrating. Ginger beer has also been helpful for some reason.

I have also worked with pain management doctors and had some never blocks done.

If you trust you surgeon never hurts to consult. Hope you start feeling better.

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