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Any experience with targeted therapy for BRAF V600E mutated tumor(s)?
Cancer | Last Active: Jul 15 12:42pm | Replies (21)Comment receiving replies
@tomschwerdt thanks so much for replying! I’m BRAF V600E positive. I told the surgical oncologist that I wanted to explore the medicinal option first, and he seemed open. At my follow up this past Monday, he said he’d reached out to his colleague at Rutgers who doesn’t think the medicinal option is worth it. Yes, we see necrosis in the center of the tumor, but the periphery still has viable tumor cells. For what it’s worth, I think the surgeon is a pretty good one.
My mother-in-law, who used to work in a dental office, leaned into her network and got me in with another surgeon for a second opinion. I’ll go through the same things with him (first consult on July 2). But I’d be lying if I said I wasn’t chasing the non-surgical option. I have access to MD Anderson through their partnership with RUSH here in the Chicago area. And I’ll be reaching out to them after coming home from vacation.
My questions for you: 1) how long were/have you been on the medicinal regimen? 2) When you say you’re satisfied, how much (rough percentage) did you see it shrink? 3) If this option existed, would you have done this the first time around?
This is my first go round with this booger. And I’m really (un)lucky because it’s located at my first premolar, and it’s already moved that tooth. Given its size (not “huge,” but not small), and “adequate” margins, the FFF surgery would see me lose 6-7 teeth aka half of my mandible. I’d be lying if I said I wasn’t chasing the non-surgical route out of fear. I also simply don’t see a downside to it. If it doesn’t work…cool, now I lose 8 teeth, that’s still half my mandible. Whereas, if it does, maybe we get by with only an enucleation procedure.
My wife prefers the surgery, she’s worried about prolonging it and seeing the thing break through my jaw bone. My fears are multifaceted, I don’t want to put our kids (2 & 4) through seeing their dad with a feeding tube for a week or more, and it’s location suggests to me that I won’t ever look the same after surgery (vain as that sounds). FWIW, I haven’t spoken to my PCP yet.
Replies to "@tomschwerdt thanks so much for replying! I’m BRAF V600E positive. I told the surgical oncologist that..."
Hey, Phil! Just checking in.
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@phillisi88
Phil,
I still highly recommend consulting an oncologist, preferably one with experience treating ameloblastoma with targeted therapy. Specifically ask them about targeted therapy and express your concerns about the surgery.
Here's how I see it:
This is typically a very slow growing tumor with little need to rush into treatment unless you're having significant negative effects from the tumor.
Choose surgery and you're probably* done. You won't look the same, your jaw won't function the same, you will have a long recovery while you go through various therapies to relearn eating, speaking, etc. You may have permanent sensation loss in part of your face due to losing the nerve which runs through the jawbone. Some folks have described their recovery process and were generally satisfied. One person here had a rejection of the fibula transplant, a possibility which was never mentioned by my oral surgeon when I asked for details on the surgery.
Choose surgery first and there's no going back.
Chose the targeted chemotherapy and you are likely to have side-effects, but not nearly as bad as classic chemotherapy. It's taking pills, not getting an IV in the hospital.
Choose chemotherapy first and if it doesn't work for whatever reason, you can go have the surgery.
Either way, you're going to need to continue monitoring that jaw for years.
How my tumor in particular responded shouldn't be the deciding factor. From what I recall of the literature I read, the majority of BRAF V600E ameloblastoma tumors went away completely with the targeted chemotherapy. The majority of those who didn't have full remission still responded, but not completely. I'm in the latter category.
It's possible my tumor is entirely gone/dead - but I can't know that unless there is exploratory surgery/biopsy. The CT doesn't actually show tumor shrinkage, it's showing bone regrowth.
Perhaps my jaw bone just stopped regrowing without filling in fully. That's what happened with my original conservative surgery - bone stopped growing and I ended up getting a bone transplant from far back in my jaw.
*Why probably? There's a certain percentage of ameloblastomas which will regrow anyway, even with the full resection and 1 cm (or more) margins. It's been awhile since I scoured the data, so I can't give you a firm number. In addition, published numbers are likely to be low since most followups on recurrence end no more than 5 years after the surgery.
I was pronounced cured 5 years after my original conservative surgery and told that I didn't need to come back for monitoring anymore. My ameloblastoma recurring 15 years after the surgery wouldn't be captured in any published statistics.