Diagnosed with Ameloblastoma

Welcome, @erikm. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe.

Allow me to post the journal article for you:

- Anti-MAPK Targeted Therapy for Ameloblastoma: Case Report with a Systematic Review https://www.mdpi.com/2072-6694/16/12/2174

Thanks for tipping me off, @tomschwerdt. Waving "hi" and getting out of the way of this helpful and supportive discussion.

One thing which surprises me a bit is that when I went to MDA, I only had to meet with:

Head and Neck Surgeon
Dentist
Medical Oncologist

Admittedly I showed up with stacks of printouts (Globally sourced research, FDA approvals, etc), was very clear that I had a science/research background and that I was very uncomfortable with the "standard of care" surgery. I believe I also mentioned that I had been emailing with a researcher in Korea who was starting a clinical trial for this particular targeted treatment for mandibular ameloblastoma with the BRAF V600E mutation. I suppose the other difference is that this is a recurrence for me since I declined radical surgery ~15 years ago. Conservative surgery got me 15 years, and in the meantime an appropriate targeted treatment was developed.

If anyone else ends up going to MDA for a consultation and it would be helpful, please feel free to contact me privately about sharing my medical records with your care team. In a few weeks I will hit the 1 year mark on targeted treatment, and it has been steady progress with the tumor shrinking/bone regrowth. Side effects have been under control for quite awhile now.

Now that I think about it, I can likely share the records with your care team at Mayo or wherever you end up going.

I believe this is the paper @erikm wanted to post: https://pubmed.ncbi.nlm.nih.gov/38927880/

In poking around, I found a relevant research study in North Carolina which is currently recruiting: https://clinicaltrials.gov/study/NCT05868629

@colleenyoung - Could you enable permissions for @erikm to post links and such? I seem to recall you did that for me early on.

Hello all- (sorry for the lengthy post)

Want to thank you all for sharing your stories. You are all inspiring! I’m the “third person” that @tomschwerdt mentioned re: targeted therapy at MD Anderson. I live in Seattle, but after doing a lot of research, chose to get treated at MD Anderson. My journey sounds very similar to the others here:
- Dec 2023 - Jan 2024: Loose tooth in right mandible (I’m missing a few teeth naturally, but it was 3rd molar) and started as minor pain like a bad cavity or tooth infection, slowly getting worse- no noticeable swelling.
- Apr 2024: Went to dentist - got standard dental panoramic x-ray and the look on her face was clearly concerned - she referred me to an oral surgeon.
- May 2024: Went to oral surgeon and had the tooth extracted and biopsy / tumor removed. The oral surgeon was also concerned with what he saw. Immediate pain relief, even before wound was healed. Got biopsy results within a week diagnosed as ameloblastoma. Referred to an Oral Maxillofacial Surgeon. Nerve damage from the tumor removal resulted in lower right facial numbness - have since recovered about 80% of sensitivity.
- Jun 2024: Met with OMF surgeon. I really did not like his bedside manner. I had done a lot of research and already knew that “radical resection” was considered the standard of care and was prepared to do it. But it became clear to me that he was looking at surgery as the only option. This makes so much sense to me now - classic hammer / nail situation. Since he is a surgeon, the only option was surgery. He told me that my research on BRAF targeted drugs was a waste of time and if I wanted to try that, I could call around to other doctors until someone said yes… I just wanted to have an open minded discussion about all the options - but he was the biased party, not me…
Jul 2024: Went back to my oral surgeon and asked for a referral to University of Washington. Since they are a research hospital / medical school, I thought I would get a more objective evaluation. They also started with surgery as the “standard of care” strong recommendation, but agreed to review my research and reexamine my biopsy sample for BRAF mutations. After sample was confirmed positive for BRAF v600 mutation, I was referred to UW Hutchinson Cancer Center / oncology.
- Aug 2024: While waiting for UW to call me to schedule a consultation, I did additional research and found @tomschwerdt ’s postings on a different forum. This led me to contact MD Anderson. MDA called me back within 48 hours and had me scheduled before I even heard from UW. My confidence in MDA is very high as they are the number 1 rated cancer treatment center in the US.

That leads to this week. After tomorrow’s appointments, I will have met everyone related to the surgical option:
- Head & Neck Surgeon
- Head & Neck Radiation Oncology (contingency only - not likely to have radiation therapy)
- Head & Neck Plastic Surgeon (they are responsible for harvesting the fibular flap and grafting it into the mandible)
- Oral Oncology
- Head & Neck CT
- Lower Extremity CT (bone donor site)

Next week:
- Medical Oncology (targeted therapy)

I will wait until I get the combined team recommendations from all the doctors and then evaluate / decide. But as @tomschwerdt mentioned, I would prefer a non-surgical approach. As I see it, ameloblastoma usually is relatively slow growing - so I can try the targeted (chemo) therapy and revert to the surgery if it doesn’t work.

BTW: Here is another medical journal article about BRAF targeted therapy: < < I’m not allowed to post links yet >> search google for “ameloblastoma raemy”
This patient was treated at the University of Lausanne in Switzerland and was a BRAF V600 positive young (teenage) female patient with good results. I spoke with Dr Raemy (lead author) and he also advocated for trying the targeted therapy first, monitoring, then only if necessary, reverting to surgery.

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.