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Diagnosed with Ameloblastoma

Head & Neck Cancer | Last Active: 1 day ago | Replies (237)

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@mjarmbruster

Hello, again!

It's been quite a while since I first joined the group back in Feb/Mar 2024. Life has a way of making you focus on the wrong things if you let it (career issues, politics, etc). Ameloblastoma has a way of correcting that unfortunate tendency.

I had a second conservative surgery this week to remove another growth, the exact composition of which hasn't been determined yet from biopsy.

The first surgery was Feb 14, 2024. I had multiple follow-up appointments with the oral surgeon in the past year. At each, he did the panoramic xray and ct scan with no notable findings. At the 6-month follow-up visit he saw a small radiolucency at the same site as the initial tumor had been. We decided to give it another 6-months and see what happened in the meantime, knowing that, if it's the amelo regrowing, it would be slow. At my 1-yr appointment, the radiolucency was twice the size as it had been at 6-months. So, I'm 4 days out from the second surgery which involved removing the growth and more bone this time. Waiting on biopsy, which he says might take longer this time due to the bone content?

All of that being said, @tomschwerdt , how are you doing with your chemo these days? I know you said it was initially rough, but it's been looking up since then?

I'm trying to wrap my head around the possibility that this thing has come back in just a year and what that might mean going forward. Best wishes to everyone in the amelo "club!"

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Replies to "Hello, again! It's been quite a while since I first joined the group back in Feb/Mar..."

Hey, the chemo was better once I was on an appropriate dose of thyroid hormone.

The main ongoing side effects I notice are: I overheat more easily (poorer thermal regulation) and my energy/endurance is somewhat lower than before starting the targeted chemo. I've been slowly losing the weight I initially gained before we got the thyroid hormone back to appropriate levels.

A rapid regrowth is definitely troubling. As I've said before, after my conservative surgery I had monitoring for 5 years with zero regrowth. After about 15 years regrowth was caught on a dental X-ray.

I've been thinking about it a lot, and I'm wondering whether all these CTs are actually necessary for just monitoring. High-resolution Panoramic X-rays are a lot cheaper, and that's all I had the first time around.