Which to do first: Vorasidenib or TMZ/radiation combo? Looking for others’ experiences
Hello!
I just got the final results from my brain biopsy and have an official diagnosis: Grade 2 IDH-mutant Astrocytoma.
My disease presentation is multifocal with 2 separate tumors - one in the bilateral frontal lobe and one in the right parietal lobe. I am not currently a candidate for resection of either tumor. We know my tumors are actively growing (8 months ago my MRI showed 2 lesions but they thought it might be demyelination - 2nd MRI 2 months ago showed growth and that it was likely tumor activity).
I met with the radiation oncologist and the neuro oncologist today and they have given me two options
- vorasidenib initially, and if there is continued growth or when it becomes ineffective, do the standard 6 week TMZ/radiation combo with 12 cycles of TMZ after (5 days on 23 day off)
or
- The TMZ/radiation combo followed by 12 rounds of TMZ initially, followed by vorasidenib in the event that I have a recurrence.
I am torn. I am only 27, but I’m not otherwise healthy. I have hEDS and a slew of other health issues including an autoimmune disease, which put me at a higher risk of not tolerating chemo/radiation well. On the other hand, sometimes chemo/radiation can give you years without recurrence (according to my doctor). There isn’t much long term data about vorasidenib which kind of scares me, but the data we have does look promising. I also worry that if my tumors continue to grow while on vorasidenib that I could end up with more deficits after radiation. At the same time, the younger I am the longer I potentially would have to live with the side effects of radiation and any long term issues it causes, so it might be better to wait on radiation as long as possible.
My team says there isn’t any evidence that doing one approach before the other is better or worse for overall survival or outcomes. I think the easier thing to do would be start with vorasidenib and then do chemo/radiation after if needed, but at the same time my tumors are quite large and very close to, if not in, very important regions of the brain, and I don’t want the tumor to infiltrate any more than it already has. I also just want the tumors gone, but my team said even with chemo and radiation it won’t be completely gone, and we might not even see much shrinkage, it might just stop growing.
Does anyone have any thoughts/opinions about what you might do in my situation? Thanks!