Diagnosed with Ameloblastoma

@tomschwerdt , thanks for your reply and the warm greeting!

-My 24 year old son had a similar experience. His dentist saw something on a routine xray so took a CT and referred my son to an oral surgeon. We were told it was most likely a typical dental cyst and they did surgery to remove it. They didn't feel the need to do a biopsy because they were so certain it was a simple cyst. We later learned this was probably the conservative "scoop" surgery. The pathology report identified ameloblastoma. The oral surgeon referred my son to a local head and neck surgeon (who does surgery in a community hospital), for follow up 3 months later. Before this appointment they checked another CT for comparison and not surprisingly saw 2 spots of the amelo, so the FFP surgery was recommended to be done in a few months or up to a year later because amelo is so slow growing.

-My son has decided he would like to proceed with FFP surgery as it seems the conservative scoop surgery rarely seems to remove all the amelo cells and recurrence occurs down the road at some point. I'm a nurse and knew we would need to have this done at a major medical center where there was a team approach and the surgeons had done many of these procedures. That's how I found Mayo Rochester and we are in the process of getting a consultation appointment there.

-To answer your question, I don't think my son's amelo recurred after the initial conservative surgery to remove what was thought to be a cyst--I think the amelo wasn't all removed at his first surgery. Perhaps if the oral surgeon had known it was amelo he would have done a more extensive, conservative scraping. Then it would be all clear at this point and my son would just be monitored frequently so any re-growth would be detected early, and we'd proceed with the FFP at that future time.

-The new wrinkle in our plan came last week when my son saw a prosthodontist who works with the local head and neck surgeon. She evaluated him for implants to be done during the FFP surgery--if he chose to have the surgery done by the local surgeon. However, she thinks the amelo is so small at this point that my son should "wait until it gets larger." She mentioned research that the FFP transplant commonly fails if there isn't a large enough piece of fibula bone that is placed in the jaw where the amelo is removed. So now we are in the process of contacting the local surgeon to clarify this. I haven't seen that issue mentioned anywhere and am dubious. This seems like another reason one should have the FFP surgery done at a major medical center by very experienced surgeons who've done a lot of these surgeries.

-Best of luck to you. This is a great site for accurate information!

Hello! Welcome to our little club @mjarmbruster !

Original discovery of my ameloblastoma was in 2007, followed by conservative surgery. Recurrence discovered in 2023. Both times discovered on a dental X-ray, followed with a biopsy by an oral surgeon and a long wait time for a pathology report.

Ameloblastoma tends to be slow growing, and tends to recur - which is why more radical surgery is typically chosen. That said, I have no regrets.

Greetings!

I've also been recently diagnosed with an ameloblastoma of the right front mandible and am SO glad to have found y'all! Although my journey is just beginning, the information provided has been quite elightening. It really does help to know what the next steps could be. Thank you all for sharing!

My tumor was discovered initially in January of this year (2024) by a dental panoramic xray. Dentist referred me to a local oral surgeon who, after performing his own xrays and CT scans, came to the initial diagnosis of Keratocystic Odonotgenic Tumor. Conservative surgery was on 2/14/24. Pathologist returned a final diagnosis of ameloblastoma, follicular type.

I have read a good number of your posts and just had one question. For those of you who experienced recurring ameloblastoma, how long after the original surgery did that occur?

@anbar04 So glad to hear that you are feeling better! Nothing but my best wishes for your continued recovery and success.

Thanks to my endocrinologist, as of about 5 days ago, I seem to have my thyroid hormone levels back to reasonable levels, and I'm feeling a lot better WRT the tiredness/lethargy/energy issue from the targeted oral chemo. Since I'm taking a pretty darn new pathway for ameloblastoma treatment, I should expect some bumps along the road. MD Anderson got me back from below normal to the absolute bottom of the normal range for thyroid hormone. I feel a lot better after my endocrinologist got me a bit higher (still somewhat below midpoint of "normal range").

I've actually felt well enough to do some gardening and walking around the neighborhood!

@tomschwerdt
Hey Tom, hope you are well how is everything going with you? Thank you for asking I really appreciate it, since they removed the bone from the jaw I feel a lot better and there’s no more leaking from my scars. I can even sense my eating getting better and my stamina and from now on they’re going to scan me often to see if the plate stays secure and if it doesn’t then we’ll have to start again but I’m staying positive that the removal of the bone was the solution. Once again thank you for asking it has definitely made my day!

Checking in on my ameloblastoma peeps!

@anbar04 - how are you doing? Last I heard, you had the most significant challenges.

Everyone else is (as always) welcome to check in, give updates, etc.

Appreciated, William. Glad we figured it out the second time it happened. Back in December I just believed the ER* that it was some kind of upper respiratory infection after they ruled out Flu A, Flu B, Covid and RSV.

Anyway, I'm not regretting the chemo path at all. It's just kinda rocky, which is what one expect with chemo.

*MDA told me to go to the ER. Fever had hit 105F. Then went away, etc.

Tom, all I can do is send you a hug. Wish I could do more. You sure have been dealt a bad hand, as if Ameloblastoma isn't enough in and of itself. I sometimes think we are placed before the firing squad with the hope that the cancer is what is hit by the bullets. Hope you have a better 2024. Love your courage.

Well, the side effects for the chemo (debrafnib/trametinib, brand name Mekinist/Taflinar) happened - fever spikes coupled with intense (and I mean INTENSE) shivering. Also had this happen back in December, but I didn't put it together, so I had quite a few rounds of fever spike/shiver, followed by OK for awhile, then repeat.

This time I paused my chemo, and didn't have a second round of fever spike/shivering. Ended up skipping 7 doses, but I'm back on it now and have contacted my oncologist about a lower dose (which is what the package insert says to do).

I think I didn't realize how bad my lethargy/tiredness had gotten until it started to go away.
https://www.novartis.com/us-en/sites/novartis_us/files/mekinist.pdf
Anyway, I intend to continue the chemo, either at a lower dose, or an official schedule to pause it for a few days.