Anyone on dabrafenib (Tafinlar) & trametinib (Mekinst) oral chemo?

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.

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.

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.

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

tomschwerdt, thank you for replying. i guess being an octogenarian and the way they have the echo grams set up one after another. kinda was a little on edge. i am already on levothyroxine, 100 mg. totally tired all the time but do push my self as movement is the potion. just the thought of any chemo drug. i have done a lot of reading but then again, sometimes not everyone has those side effects. so wishing you the best.

That's a lot higher dose than they started me on - I'm on 25 mcg of Synthroid (levothyroxine).

Note: Hormone doses are incredibly tiny. I suspect you are on 100 micrograms (mcg) whereas most medications are dosed in milligrams (mg)

Yes, I had to get an echo, EKG and bloodwork before we started the debrafnib/trametinib and again at the monthly followups.

hi tomschwerdt, sorry, thanks for correcting me, it is the mcg. i just came back from getting the bloodwork and the EKG, the 9th i will have the echo. then on the 21st will be the MRI. just trying to keep up is a job in itself. the dr. wants me on the same pills you are on and i was wondering if you would be so kind as to tell me the strength of your medicine. my trametinib is 0.5mg. and the dabrafenib is 50mg. i can't tell you how much it means to have someone talk to you. thank you so much. the dr. said i have approx. 6-10 months. she says these pills will help me to feel better. thank you again and wishing you wellness and happiness.

I'm taking a total of 300mg of dabrafnib and 2mg of trametinib every day. I was told that if I couldn't tolerate that dose, the oncologist would reduce it.

Here's a link to the manufacturer's dosing information, though annoyingly they use the brand names:
https://www.us.tafinlarmekinist.com/advanced-melanoma/about-tafinlar-mekinist/dosing-and-administration/
If you are on private insurance: Be sure to sign up for the manufacturer's Universal Copay program. Normally I'd be paying $120/month in copays, with the copay program it's $0.
https://www.us.tafinlarmekinist.com/advanced-melanoma/patient-support/cost-support/

hi tomschwerdt, thank you so much for the links. very helpful. they rx'd me some miracle mouthwash. also some nausea drugs and some muscle relaxers for the jaw and wow, some pain pills. so what you are saying then is that a lot of those side effects that they show, you sound like it was no problem for you. great news then. gosh, all of it is so scary. then i got a msg. today that my ekg was abnormal. so ...which way is up? tomorrow is the echo, so that should tell the tale of the ekg. thank you again and wishing you wellness and happiness.

Just to give you an update - the Synthroid seems to be working. For the past few days I've been back up to fairly normal energy levels.

My followup at MDA is tomorrow, so I'll be able to find out whether the blood test agrees with how I feel...