Diagnosed with Ameloblastoma

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!

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.

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.

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.

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!

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?

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

Happy Solstice!

So, just got back from my MDA followup. After ~8 weeks on the targeted oral chemotherapy, my ameloblastoma is... stable.

It's definitely good news. Was I hoping there would be some shrinkage? Of course - but I'll take it. Pain hasn't come back, just the occasional odd sensation in the jaw/teeth.

T4 (Thyroid hormone) is also back (barely) in the normal range, with the lowest dose pill of Synthroid for ~4 weeks.

Annie, sorry for the late response. Dr. Divi did my fibula free flap reconstruction. From what I heard by his fellow doctors was that they do these every week. They have full team of Swallow pathologists, Dieticians, nurses who are trained to support the patient recovery. Not just Ameloblastoma, they treat anything related to head & neck tumors. Their web site is very bad, doesn't list doctors experience or qualifications very well like other web sites I have seen, a lot of stale information. Hope they take time to update their website. They are too busy for that.

It took Oral surgeon & Dr. Divi almost 10 hours to remove the tumor and do the reconstruction. I love the speedy responses that Dr. Divi team provides. They also perform their tasks with the same speed behind the scenes. I live only 12 miles from Stanford, so I chose them. UCSF Dr. El-Sayed is good too. UCSF doesn't need any referral, but Stanford does need a referral to Head & Neck Oncology department. I got referred by Stanford Oral surgeon. I wish I had gone to HNO department to begin with.

If you like Mayo in FL and it is close to your son, you may want to prefer that per Colleen and other referrals. If Mayo FL has experience in treating these just like Stanford & UCSF, or even better than those 2, then you are in the right place.

@anniecl, that's great news. I'm so glad that you contacted Mayo Clinic in Jacksonville again and will have your records reviewed. I believe fellow members @paulreese and @davehutsell have been treated at Mayo Clinic in Jacksonville for head and neck-related cancers.

Hoping for the best, Annie. Keep us posted.