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Any experience with targeted therapy for BRAF V600E mutated tumor(s)?
Cancer | Last Active: May 17 8:08pm | Replies (12)Comment receiving replies
@bellavoce Marion, this is such great news! I'm sorry you had troublesome side effects but, in my reading at least, I would take every single one of those side effects over having my jaw resected.
In pursuing the inhibitors, did you insurance cover them, were you able to get aid from Novartis? And, pardon the intrusion, how far along was your ameloblastoma? My initial biopsy does not appear to have looked at gene mutations, given the rarity I wouldn't expect a lab to look for them, so I'm expecting to have that as part of my consult today.
I hope your healing continues!
Best,
Phil
Replies to "@bellavoce Marion, this is such great news! I'm sorry you had troublesome side effects but, in..."
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@phillisi88 I agree! Amelo is so rare It's hard to find a specialist who is able to treat the disease let alone offer non-surgical options. My insurance company was not helpful. They said that Amelo is not classified as cancer, therefore any non-surgical approach is "experimental." They refused to cover the BRAF test. However, the cancer center I went to had funding sources so I didn't have to pay for the tissue test, genomic blood tests, or the drug therapy. My copay with Novartis was zero.
My tumor was small so they did an enucleation and curettage during the biopsy. Resection was highly advised to make sure they "got it all." I think if you want your tissue tested, you have to make a specific request. It's very expensive. I also don't know if an oral surgeon will look at genetic mutations because they consider a resection as the only cureative approach to Amelo. But, it doesn't hurt to ask.
May you find the answers and best treatment options for your situation.
All the best,
Marion