Anyone on dabrafenib (Tafinlar) & trametinib (Mekinst) oral chemo?
is anyone else taking mekinist and dabrafenib for oral chemo. very nervous about the situation. onconologist agree on no target radiation. have no idea to their conclusion.
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Only side effects were what I noted above: Feeling exhausted, most likely caused by lowered T4 (thyroid hormone) levels, addressing it with Synthroid.
https://www.drugs.com/synthroid.html
hi everyone, i was curious about that braf gene and just went into some notes on my papers and found out that i have the BRAF V600 wild type P53. goodness, well, onto some more research to learn more about my condition after all the things i have been through and now set up for a lot more test and etc. take care all.
hi tomschwerdt, thank you for getting back to me. sorry that yours is somewhat different diagnoses than mine. i have the aggressive papillary and had the radical thyroid surgery done on the right side jan. 31 and the 2nd one in march 28, so from all the tests, i131 radioactive iodine, high dose which was suppose to take care of any missed cancer cells. well, nope. then onto the cat scan, barium swallow, pet scan and now they decided not to do the direct radiation treatments, 33 of them. whew! thank god. so its down to the hemotology oncologist and this is where i am now, i haven't started to take the pills yet as i have read and have been informed of the side effects. yes, to the braf v600E gene. how were your side effects as they say some people are different. thing is: my parotid glands are acting up and at times it feels as if they are going to lock up my jaw. weird! wish you luck, stay in touch.
Yes, I have been on that combo since the beginning of October to target the ameloblastoma tumors in my jawbone. Is your tumor confirmed to have the BRAF V600E mutation like mine?
Some highlights:
The ongoing pain/pressure from inside the jawbone went away within a week. I get an occasional twinge, but it feels like a different kind of paint - hopefully healing. I do mean occasional - it's a few minutes once every 2-3 days.
I have been really exhausted. At my 1 month followup, I found out why - it noticeably dropped my thyroid hormone levels (free T4) all the way below normal range. I started synthroid, which should address it - but per the doctor it's likely to take 4-6 weeks to be fully effective.
Early December I should be getting some imaging so we can have real evidence of any changes in the tumors and bone around them - while I'm hoping for tumor shrinkage and bone regrowth, even having no further growth of the tumors is a win for now.