1. < Brain Tumor
Profile picture for jessetimmer

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

Posted by jessetimmer @jessetimmer, Jan 14, 2022

Has anyone else had a grade 2 Astrocytoma IDH Mutant

Interested in more discussions like this? Go to the Brain Tumor Support Group.

Profile picture for workinprogress
workinprogress | @workinprogress | Sep 27, 2024
In reply to @joesimmons "I was on Temozolomide (TMZ) and my symptoms got so bad by the 10th cycle (stabbing..." + (show)
Profile picture for joesimmons @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.

Jump to this post

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.

REPLY
Profile picture for Colleen Young, Connect Director
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 2, 2024
In reply to @taylorstrona "Hi! I am following up with you, as I have same diagnosis and am in turmoil..." + (show)
Profile picture for taylorstrona @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?

Jump to this post

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

REPLY
Please sign in or register to post a reply.