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← Return to Diagnosed with Ameloblastoma
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Head & Neck Cancer | Last Active: Oct 28 6:03pm | Replies (227)
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@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 🙁
Replies to "@tomschwerdt How are you doing with the chemotherapy? Have you had any side-effects? I'm hoping for..."
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@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.