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.

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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
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
1 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 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!

Jump to this post

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
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.

Jump to this post

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 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
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
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?

Jump to this post

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.

REPLY
Tom Schwerdt | @tomschwerdt | Dec 21, 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?

Jump to this post

Just keeping on keeping on - the tiredness/lethargy from the targeted oral chemo is pretty much gone now that I've been on Synthroid for awhile. Other than that - I'm about 4 weeks away from my next followup, and about 8 weeks away from my next imaging followup. Hoping it shows shrinkage, but continuing at stable is still a win for me.

So sorry to hear that your bone transplant didn't take. I hope they figure out a good approach for you going forward!

REPLY
anbar04 | @anbar04 | Dec 21, 2023
In reply to @tomschwerdt "Checking in with my Ameloblastoma peeps - hope everyone is doing well! Feel free to post..." + (show)
@tomschwerdt

Checking in with my Ameloblastoma peeps - hope everyone is doing well! Feel free to post updates if you are up to it.

Happy Solstice!

Jump to this post

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?

REPLY
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