Diagnosed with Ameloblastoma

Targeted therapy followup: Continued slow bone regrowth, staying the course. We're getting close to a year on the meds.

@lesleylbrown I hope your appointment went well. Feel free to ask anything, either openly here or via DM.

@lesleybrown, hey hope you’re well. In terms of if I had a choice between the conservative and radical surgery as a mother of a younger child I would also pick conservative surgery. The only reason I did do a radical surgery was purely because I had the ability to take a year off from my university and had time to heal and the surgery does require that time to heal and being that little bit older than your son it allowed me to be mentally prepared for any trials that came my way in a much more rational way.

In terms of what you need to know everyone varies in terms of recovery but it’s hard for the first few months as you do need to retrain your body to eat, walk, speak etc. For me the first two weeks were the hardest just because it’s so intense straight away but as long as you have a good team around you progress can be made i even walked around the ICU 3 days in. I think the weirdest part is the lack of independence in the hospital from the catheter to the tracheostomy and overall discomfort you feel from tubes and wires being all over you and from leaving the hospital the hardest part is staying positive and actively trying to get better which is why I think the fact your son is so young is something to consider, do you think he has the ability to keep himself going and can you watch the process unfold and keep on going yourself?

That being said I know the points I’ve explained do sound pretty intense I don’t particularly regret my journey as it’s aided me to become a better person and a year later I can walk, talk, eat, sleep extremely well. I go to the gym regularly and my plate is stable and I feel genuinely happy especially since I start my university soon. What you chose to do is a big decision and I think take your time with it and of course ask questions and make sure every person that can be effected by the outcome whether it’s mentally or physically or both is involved in your conversations and also listen to what makes you guys best off as that’s the most important thing. We’re also here to provide clarity over general/specific questions💕

@lesleylbrown I've absolutely had side effects from the targeted chemotherapy, though it's not nearly as bad as classic chemotherapy.

The biggest issue was that it suppressed my thyroid, so I take thyroid hormone pills (Synthroid). it took a couple of months to get the dose dialed in. I have occasional nausea, but it's generally only for a few minutes. I haven't even used the anti-nausea medication they prescribed.

Low thyroid hormone levels made me lethargic (low energy). Hard to get up and do anything. With the appropriate level of Synthroid, I have about the same energy as before the targeted chemotherapy started.

If you're already in Texas, I'd see if you could get a referral to MD Anderson in Houston. Specifically the "Head and Neck" group. UTMB Galveston is good, but MD Anderson is world class.

Frankly, I'm happy I had conservative surgery 15+ years ago. It took care of the issue long enough for there to be another option. I was very concerned this time around when I was initially recommended to have a radical resection and fibular flap. @hrhwilliam or @anbar04 can give you first hand information about that surgery. You can also see what they shared earlier in this thread/discussion.

Finally, while officially ameloblastoma is "not cancer" - I believe it is misclassified. If that matters to you, you can see my arguments earlier in this discussion.

@tomschwerdt How are you doing with the chemotherapy? Have you had any side-effects? I'm hoping for a conservative surgery since my son is so young. If conservative surgery isn't an option, i would be nice to have another option instead of going directly for a jaw resection 🙁

Thank you so much for your words of advice @tomschwerdt and @hrhwilliam

We are scheduled for an appointment tomorrow. We were referred to UTMB in Galveston, which is awful timing due to a newly developed hurricane in the gulf! Hoping this doesn't affect our travels (probably about an hour away).

I look forward to asking questions and getting more information. @hrhwilliam the first question I have on my list is what is the doctor's experience dealing with ameloblastoma.

@hrhwilliam @tomschwerdt @anbar04 i have a list of questions to ask, but if there is anything important you can think of that I should ask please, let me know! Any information would be greatly appreciated.

@lesleylbrown

Be sure to discuss different surgery options and get additional opinions. It's a slow growing tumor. Make the right choices for your family. It's a SUPER rare tumor, so I echo what @hrhwilliam says - I would be sure to get a consultation at a top center like Mayo, MD Anderson, etc. I'm in Texas, so I ended up at MD Anderson this time.

I had conservative surgery (jaw preservation surgery) when I originally had the ameloblastoma detected in 2007. It took about 15 years for the ameloblastoma to grow back to similar size.

A couple of years ago, a genetically targeted drug regimen (targeted chemotherapy) was approved by the FDA for BRAF V600E tumors, which is the mutation in ~80% of mandibular (jawbone) ameloblastomas. I take 5 pills a day and the tumor is slowly shrinking/bone regrowing.

I was the first ameloblastoma patient to get this treatment at MD Anderson on Houston, starting last October. Months ago I found out that a second ameloblastoma patient started getting this treatment. A third person that I met on a different forum is headed there for an evaluation next week.

Thank you @anbar04 your kindness means more than I can express 😭❤️❤️❤️

Hi @lesleylbrown and welcome to the Mayo Clinic Connect Head and Neck Cancer group. First of all Ameloblastoma is not considered a cancer, just to get that out of the way. Yet it is such a rare phenomenon of the dental / mandible / jaw area that we found it appropriate to place this group within the Head and Neck group. The surgery's are often related and certainly the rebuild surgery if necessary is roughly identical, and rare as well.
I personally have not had Ameloblastoma. However, I have had the same surgery as @anbar04 and others who check these pages regularly. Anbar is my hero in that she is young yet faced this issue head on (no pun intended, but it works) and has moved on in life certainly stronger than ever both in heart and mind. You will also find others here who can guide you along the way.
Word of caution, insure the surgeon is experience with this specifically. If not, get a referral or search on your own. If in the USA, there are a handful of hospitals / clinics with experience in Ameloblastoma, Mayo, M.D. Anderson, Cleveland Clinic, and a handful of others there for example.
Don't be scared. Courage. This can be managed and will be. Life is what happens when you are making other plans.

I think with the appointment try to ask all the questions you have don’t even feel bad for asking I asked about 30 questions! I think it can be an appointment to go through your options and ease any worries you have and they may do some tests or schedule for scans etc. I think whilst being a support system for your son also have a support system for yourself and don’t feel bad for how you feel each day is different so take it as it comes.