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Pleomorphic xanthoastrocytoma tumor (Pxa): help

Brain Tumor | Last Active: Dec 9, 2023 | Replies (132)

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@sampowerful1

Hi, I see this has not been replied to in 3 years. Please let me know if there is a new post. I recently got diagnosed with this at age 30 (a Grade 3) and was removed about 3 weeks ago. I had the BRAFV600E mutation and will undergo radiation therapy starting in a week or 2 (to make sure the surgeon removed everything). I know everyone's experiences are different, how were everyone's reaction to the medication? I'm hoping it actually worked for most of you. I'd also like to connect to some of you if that will be easier. Thanks.

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Replies to "Hi, I see this has not been replied to in 3 years. Please let me know..."

Welcome, @sampowerful (love the username). I'm tagging fellow members @dgruk @juliaf @kodabear @bjh369 @javierhortal and @jakejta, who have experience with pleomorphic xanthoastrocytoma (Pxa) tumors and may return to share with you.

You might also wish to join the monthly AYA (Adolescents and Young Adults) Cancer Support Group on Zoom to meet others living with cancer. They meet the first Thursday every month from 6:00 pm – 8:00 pm ARIZONA time. The next meeting is Oct 5. Here's more info:
https://connect.mayoclinic.org/event/aya-adolescents-and-young-adults-support-group-10/
How's recovery from surgery going? Have you started radiation now?