1. < Head & Neck Cancer

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.

Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Dec 23, 2023
In reply to @anbar04 "Hey guys, I hope you’re all well and finding lots of peace and clarity within this..." + (show)
@anbar04

Hey guys, I hope you’re all well and finding lots of peace and clarity within this period! My ameloblastoma journey has been really odd, I had the free flap from the bone in my shoulder blade and now four months down the line the bone has failed so today I got the bone all removed and now I have to wait for the site to fully heal and then go from there so it’s all over the place as of now but I’m happy and forever grateful I’m in this position and I have learnt a lot and definitely become a better person because of this up and down journey. How is everyone else doing?

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Well this is not the direction your journey was supposed to go. Nuts!
Other than to send hugs your way I am at a loss for words. You are in my thoughts and prayers that soon this all gets set right for you.

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Tom Schwerdt | @tomschwerdt | Jan 16 10:38am

Hopefully everyone could have some good holidays!

Anyone with any updates? Progress (or not), new treatment plans, etc?

Next followup for me is Friday, but unless something unusual shows up - it's just keep on keeping on.

REPLY
kkd | @kkd | Jan 17 12:00pm
In reply to @anbar04 "Hey guys, I hope you’re all well and finding lots of peace and clarity within this..." + (show)
@anbar04

Hey guys, I hope you’re all well and finding lots of peace and clarity within this period! My ameloblastoma journey has been really odd, I had the free flap from the bone in my shoulder blade and now four months down the line the bone has failed so today I got the bone all removed and now I have to wait for the site to fully heal and then go from there so it’s all over the place as of now but I’m happy and forever grateful I’m in this position and I have learnt a lot and definitely become a better person because of this up and down journey. How is everyone else doing?

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Sorry to hear @anbar04 . How did they know that bone has failed? Did they give the options now to fill the gap? I have my doctor appointment tomorrow to check on my flap because it leaked some fluid through a tiny hole 2 weeks back, feeling nervous about it.

REPLY
1 reply
anbar04 | @anbar04 | Jan 17 2:17pm
In reply to @kkd "Sorry to hear @anbar04 . How did they know that bone has failed? Did they give..." + (show)
@kkd

Sorry to hear @anbar04 . How did they know that bone has failed? Did they give the options now to fill the gap? I have my doctor appointment tomorrow to check on my flap because it leaked some fluid through a tiny hole 2 weeks back, feeling nervous about it.

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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!

REPLY
3 replies
kkd | @kkd | Jan 17 5:52pm
In reply to @anbar04 "Hey, I just wanted to give you some sort of reassurance. If you still have fluid..." + (show)
@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.

REPLY
Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Jan 17 10:29pm
In reply to @anbar04 "Hey, I just wanted to give you some sort of reassurance. If you still have fluid..." + (show)
@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!

Jump to this post

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

REPLY
kkd | @kkd | Jan 18 6:50pm
In reply to @anbar04 "Hey, I just wanted to give you some sort of reassurance. If you still have fluid..." + (show)
@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!

Jump to this post

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.

REPLY
Tom Schwerdt | @tomschwerdt | Jan 29 11:48am

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.

REPLY
1 reply
Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Jan 29 1:32pm
In reply to @tomschwerdt "Well, the side effects for the chemo (debrafnib/trametinib, brand name Mekinist/Taflinar) happened - fever spikes coupled..." + (show)
@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.

REPLY
1 reply
Tom Schwerdt | @tomschwerdt | Jan 29 2:32pm
In reply to @hrhwilliam "Tom, all I can do is send you a hug. Wish I could do more. You..." + (show)
@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.

Jump to this post

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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