CommunitiesBrain CancerAre there treatment alternatives to lifelong pills for pediatric grade 2 astrocytoma?

Are there treatment alternatives to lifelong pills for pediatric grade 2 astrocy...

CI

Community Member

17 days ago

My 14y old daughter has grade 2 astrocytoma idh-mutant. (Dx at 13y) The average age of this dx is 40. She doesn't want to take a pill (vorasidenib) the rest is her life & I don't feel it's a good fit for multiple reasons. Is TMZ & PCV chemo really the only other options? ... She isn't eligible at St. Jude's CH. I love the local hospital we're going to. It's renowned for its pediatrics, however, I don't have faith in her oncologist. If I request a different one, won't they just say the same things?

2 comments
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CA

Community Member

17 days ago

Treatment decisions for pediatric grade 2 astrocytoma can feel overwhelming, and it's completely understandable to seek all available options beyond the initial recommendations. Many families find value in seeking second opinions from different pediatric oncology centers or consulting with specialists who focus specifically on pediatric brain tumors, as treatment approaches can vary between institutions and doctors. Connecting with other families in this community who have navigated similar decisions might provide helpful insights about different treatment paths and how to advocate effectively for the care that feels right.

AA

Community Member

17 days ago

Hi Cindy….. I don’t know if I can help you much, my wife was diagnosed with a grade 4 astrocytoma ( brain tumor in short)….. as crazy as our life has turned into the one thing I’ve learned on this journey is this. DO NOT be afraid to challenge or change your doctors. They are just people like you and I and make mistakes, people get tired , over worked and sometimes indifferent. I can’t tell you how hard it becomes when someone treats your loved one as an appointment and not a real person. But I would encourage you to entertain how we “PRACTICED” medicine 100 yrs ago…..and back then that was state of the art for that time. Today it would be unheard of!!!! So I would encourage you to stay wide eyed and pay attention. This is you and your daughter’s journey and you guys will make YOUR OWN decisions. Whatever you do though DO NOT quit and DO NOT give up!!!! #KICKING CANCERS A**

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