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.

Okay, now I get to picture @anbar04 as a barrister wearing a powdered horsehair wig to address the Court... 😀

I hope you don't mind me being a bit silly there...

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@tomschwerdt

@anbar04 Thank you so much for your well wishes! I'm glad you can get on with your life and head off to University!

If you don't mind sharing, whereabouts are you headed to University? I went to University of Delaware.

Are there some more treatments planned, or is it just recovery and physical therapy type stuff for you? That rejection had to be really rough for you. I can't even imagine.

I don't think I mentioned it here, but apparently I started grinding my teeth hard due to the stress during the timeframe between when the dentist found the recurrence, the months for confirmation and the months for getting referred to MD Anderson and starting actual treatment.

Due to the grinding, I cracked three teeth, scattered around - both sides upper plus lower left (above the tumors). Had my first crown on a natural tooth earlier this week - temporary, of course while the permanent one is being made. Not fun, but a lot better than jaw surgery! They'll start on the upper left when I go back for the permanent on upper right in a couple of weeks. Not going to do the lower left until I have more confidence I'll actually keep the tooth - and it's also the only one which doesn't bug me at all.

I've been using a night guard since the cracked teeth were found.

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Thank you! My treatment plan is currently checking on the jaw every few months to ensure the plate doesn’t move as if it moves we have to start all over again which is the worst possible outcome so we keep scanning and praying for positivity! As I live in London I’ll be going to a university called Brunel it’s only 30 minutes from me so it’s not to bad hopefully I can pursue my law degree with the best health!

Honestly teeth grinding is more common than I thought and it may be unpleasant but at least the treatment is a breeze compared to what you’ve been through! We’ve all got this that’s the one thing I know!

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@anbar04

Hey, keeping on keeping on sounds good and the results for you also sounds good I’m so happy for you. For me I feel pretty good too the swelling has mostly gone and my energy levels have gone up since I joined the gym. I’m just preparing for university in 4 months! My consultant found that everything looks good I just am still struggling with some foods but I’m sure that’ll come in time especially since I only have a plate. How is everyone else?

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@anbar04 Thank you so much for your well wishes! I'm glad you can get on with your life and head off to University!

If you don't mind sharing, whereabouts are you headed to University? I went to University of Delaware.

Are there some more treatments planned, or is it just recovery and physical therapy type stuff for you? That rejection had to be really rough for you. I can't even imagine.

I don't think I mentioned it here, but apparently I started grinding my teeth hard due to the stress during the timeframe between when the dentist found the recurrence, the months for confirmation and the months for getting referred to MD Anderson and starting actual treatment.

Due to the grinding, I cracked three teeth, scattered around - both sides upper plus lower left (above the tumors). Had my first crown on a natural tooth earlier this week - temporary, of course while the permanent one is being made. Not fun, but a lot better than jaw surgery! They'll start on the upper left when I go back for the permanent on upper right in a couple of weeks. Not going to do the lower left until I have more confidence I'll actually keep the tooth - and it's also the only one which doesn't bug me at all.

I've been using a night guard since the cracked teeth were found.

REPLY
@anbar04

Hey, keeping on keeping on sounds good and the results for you also sounds good I’m so happy for you. For me I feel pretty good too the swelling has mostly gone and my energy levels have gone up since I joined the gym. I’m just preparing for university in 4 months! My consultant found that everything looks good I just am still struggling with some foods but I’m sure that’ll come in time especially since I only have a plate. How is everyone else?

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It's always good to hear from you and am glad you are on the mend. Because you fought this battle with such courage, never giving up, university should be a breeze. Good on you as you will always be stronger than those around you. Time should heal all.

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@tomschwerdt

Hey, folks! Just checking in since it's been a few weeks. I'm keeping on keeping on - interim bloodwork looked good, energy levels are reasonable, next imaging visit for me should be sometime in the second half of June.

Any updates from anyone? Also, specifically from @anbar04 and @zigvero24

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Hey, keeping on keeping on sounds good and the results for you also sounds good I’m so happy for you. For me I feel pretty good too the swelling has mostly gone and my energy levels have gone up since I joined the gym. I’m just preparing for university in 4 months! My consultant found that everything looks good I just am still struggling with some foods but I’m sure that’ll come in time especially since I only have a plate. How is everyone else?

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Hey, folks! Just checking in since it's been a few weeks. I'm keeping on keeping on - interim bloodwork looked good, energy levels are reasonable, next imaging visit for me should be sometime in the second half of June.

Any updates from anyone? Also, specifically from @anbar04 and @zigvero24

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New paper out on targeted treatment of mandibular ameloblastoma with the BRAF V600E mutation. It appears to be a more detailed version of the conference poster from 2022. I don't have access to the full paper yet, working on it.

https://academic.oup.com/jnci/article-abstract/116/4/539/7421919
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My real concern about treating a "cyst" before biopsy is - what if it isn't a cyst? If it's ameloblastoma, they're going to want to go back in and do even more extensive surgery - something I personally wasn't willing to do until I exhausted other options.

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@zigvero24

I’m going to push for a biopsy prior to any other procedures. Thank you for connecting with me.

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Keep us in the loop - hope it works out for you, and let us know how we can help.

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@tomschwerdt

Both times I had a biopsy and a pathology report before any more significant treatment.

First round (~2007) I did "conservative" surgery which included two teeth and a big chunk of jawbone + autologous bone transplant + dental implants, which got me though to 2023 - this time I've pushed hard to pursue chemotherapy because my ameloblastoma has a the BRAF V600E mutation - and there is a recently FDA approved oral (pills) chemotherapy for other cancers with that specific mutation.

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I’m going to push for a biopsy prior to any other procedures. Thank you for connecting with me.

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