Hey, Tom here - just joined this morning. Happy to find what seems to be an appropriate group to discuss with. Background is as a scientist, these days I'm effectively project sponsor on a couple dozen research projects. Nothing to do with medicine.

In 2007 I was diagnosed with an ameloblastoma - a rare, "benign but locally aggressive tumor" in my left mandible (jawbone). It's probably back, I'm waiting on a biopsy to confirm.

Having an ameloblastoma feels like being orphaned. It's not just that the tumor is rare, it's being told "It's not cancer" and not getting the option of trying an oncology based approach. From a layman's perspective that just seems too limited. It's a tumor. Growing in and progressively destroying my bone. Small studies have shown excellent response to a drug/inhibitor approach.