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Diagnosed with Ameloblastoma

Head & Neck Cancer | Last Active: May 18 5:08pm | Replies (174)

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@tomschwerdt

Well, the side effects for the chemo (debrafnib/trametinib, brand name Mekinist/Taflinar) happened - fever spikes coupled with intense (and I mean INTENSE) shivering. Also had this happen back in December, but I didn't put it together, so I had quite a few rounds of fever spike/shiver, followed by OK for awhile, then repeat.

This time I paused my chemo, and didn't have a second round of fever spike/shivering. Ended up skipping 7 doses, but I'm back on it now and have contacted my oncologist about a lower dose (which is what the package insert says to do).

I think I didn't realize how bad my lethargy/tiredness had gotten until it started to go away.

https://www.novartis.com/us-en/sites/novartis_us/files/mekinist.pdf

Anyway, I intend to continue the chemo, either at a lower dose, or an official schedule to pause it for a few days.

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Tom, all I can do is send you a hug. Wish I could do more. You sure have been dealt a bad hand, as if Ameloblastoma isn't enough in and of itself. I sometimes think we are placed before the firing squad with the hope that the cancer is what is hit by the bullets. Hope you have a better 2024. Love your courage.