@tomschwerdt hey Tom, thanks for reaching back out!

The surgeon at UI-C was very much open to, and submitted a referral for, me to meet with a medical oncologist to discuss BRAF treatment as a neoadjuvant therapy. He, the surgeon, has not been part of treating any amelo patients in this way, but said “there’s no harm in trying.” On the other hand, he’s of the opinion that tumor shrinkage is likely not to result in any treatment other than FFF to “cure” the tumor.

I meet with the oncologist on July 22, then have a follow up with the surgeon on July 30. Regardless of the outcome of the oncologist consult, I’ll be receiving treatment here at UI-C. The comfortability with the staff, even after a single visit, was felt almost immediately. I’m excited to at least have the conversation with both doctors here.

This new surgeon did mention that he’d hoped the BRAF inhibitor therapy would’ve been an end all be all for amelos, but that hasn’t been borne out. Part of me thinks that’s multifaceted 1) people don’t dig into treatment options prior to surgical consultation, 2) there aren’t enough people with amelos to begin with, and 3) surgeons do surgery. From my reading, and I’m hoping the oncologist is well versed, most patients see pretty extensive bone regrowth/tumor shrinkage and are able to minimize surgery with it.

The unknown, however, is long term. We know amelos can recur after 15+ years, but this medical route hasn’t even been available that long, let alone have enough clinical use to determine long term effectiveness. Recurrence after FFF is low, but not 0%. As apprehensive as I am now for a primary amelo, I’d be even more so for a recurrence. That would simply be unacceptable to me. So, anything I can do to minimize that outcome is my preferred approach.