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@phillisi88 I met with specialist oral surgeons in different states but they only offered surgical options. Radical resection surgery was not an option for me because of the high morbidity. I reached out to a cancer institute and asked them to test my biopsy tissue for the BRAF mutation. They confirmed it. I was able to pursue a non-surgical route with their oncologist using Taflinar + Mekinist. Drug therapy lasted four months. Side effects were troublesome but the drugs had a definite impact on reducing the tumor and stopping new growth. Follow-up scans continue to show healing/restoration of my jaw bone and no recurrence of the tumor. If given the choice again, I would pursue the non-surgical route because it preserved my quality of life.

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Replies to "@phillisi88 I met with specialist oral surgeons in different states but they only offered surgical options...."

@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