Diagnosed with Ameloblastoma

Posted by caw @caw, Nov 9, 2021

Reaching out to anyone else wanting to connect with others diagnosed with Ameloblastoma and the journey involved.

My background, diagnosed February 2021, segmental mandibulectomy, fibula free flap March 2021.

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

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?

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@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!

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@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!

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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.

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@hrhwilliam

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.

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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.

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@tomschwerdt

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.

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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.

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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.

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@anbar04

Hey, I just wanted to give you some sort of reassurance. If you still have fluid leaking you’ll most likely be prescribed with some antibiotics to clear any infected area. I was on antibiotics for 4 months and my wound wouldn’t stop leaking so they opened it up surgically to find the bone broken and away from the plate. For now I’m trying to heal and they said when I feel ready they’ll most likely do a bone graft from the hip to curate bone. I know it’s hard to not worry and to feel uneasy but it’s most likely just wound that’s not healing or an infection that’s flared up. My best advice is to not worry about things we can’t control and if it does come to the point of having to be surgically looked at, just know know that there is options and the more hardship we face the better the reward is. You’ve got this, make sure to update!

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They said the same things you told to repeat antibiotics, but for now, no infection or leaking so no antibiotics, they will do CT scan to check the bone health.

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@anbar04

Hey, I just wanted to give you some sort of reassurance. If you still have fluid leaking you’ll most likely be prescribed with some antibiotics to clear any infected area. I was on antibiotics for 4 months and my wound wouldn’t stop leaking so they opened it up surgically to find the bone broken and away from the plate. For now I’m trying to heal and they said when I feel ready they’ll most likely do a bone graft from the hip to curate bone. I know it’s hard to not worry and to feel uneasy but it’s most likely just wound that’s not healing or an infection that’s flared up. My best advice is to not worry about things we can’t control and if it does come to the point of having to be surgically looked at, just know know that there is options and the more hardship we face the better the reward is. You’ve got this, make sure to update!

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Hey @anbar04 You are a trooper! Sorry this has been a rough road for you. Tough times never last but tough people do.

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@anbar04

Hey, I just wanted to give you some sort of reassurance. If you still have fluid leaking you’ll most likely be prescribed with some antibiotics to clear any infected area. I was on antibiotics for 4 months and my wound wouldn’t stop leaking so they opened it up surgically to find the bone broken and away from the plate. For now I’m trying to heal and they said when I feel ready they’ll most likely do a bone graft from the hip to curate bone. I know it’s hard to not worry and to feel uneasy but it’s most likely just wound that’s not healing or an infection that’s flared up. My best advice is to not worry about things we can’t control and if it does come to the point of having to be surgically looked at, just know know that there is options and the more hardship we face the better the reward is. You’ve got this, make sure to update!

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Thank you for your assurance @anbar04 . Glad to know that there are still options. Is yours Maxilla or Mandible? Mine is Left Maxilla bone. It's been 8 months since they reconstructed my flap, it was the first time it leaked 2 weeks back some yellow fluid after a lot of swelling for 2-3 days. No leaking since then, but I requested them to check because I have a concern. I will post the update tomorrow after my visit.

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