Tepotinib (Tepmetko) - best time of day to take it?

@popsue I haven't encountered via FaceBook or Mayoclinic any others who have been on Tepmetko for any length of time. I've only been on it since May this year. After 7 weeks of taking the full dose, I had bad edema in my legs and the oncologist said to stop taking it. Then after 2+ weeks of no Tepmetko (and I felt a lot better but edema wasn't much better), he said to resume at half-dosage. So that's what I'm currently doing. When I look on-line, I see that folks are often on half-dosage and that's considered OK. I'm scheduled to have another CT scan the end of September and then an oncologist appointment. Sure am curious as to what those nasty cancer cells in my lung are doing! (diminishing? or multiplying?)
Best wishes for your treatment.

Thanks, I’m a bit apprehensive about starting it. Other than the swelling, did you have any other side effects?

@popsue Before the swelling, I had the side effect of FATIGUE. So tired at various times during the day that I could barely talk (so I'd lie down for a rest). In the early evenings I'd be ready for bed by 8 but stayed up till 9. Had never experienced this kind of fatigue before. Now the fatigue is greatly diminished (accustomed to the drug? or because I'm on half-dosage?).
One other side effect that isn't mentioned by anyone nor on the Tepmetko website: my skin became ultra-dry so that I have big patches of dead skin (Aquaphor is recommended and helpful). Also, I feel like the drug has triggered some keratoses... many have emerged on my face, arms, legs. An area that already had keratoses has become ultra-itchy and dry. And that's it... so far!

Sorry to hear of the dreaded fatigue and intractable edema.
I first took Tepmetko in 2022, soon after its release.
The edema became unmanageable and my skin was weeping fluid through the skin with so many areas on my legs (still there) breaking down with ulcerations. After close to a year on the 1/2 dose I had to stop it due to these issues, but on the good side, my cancerous lesions were GONE on followup PET SCAN.
Waited about 6 months, edema remitted, but leg lesions were horrible and went to wound clinic for over a prolonged period and finally some signs of healing showed.
After the 6 month period ground glass lesions appeared again with biopsy proven cancer again. Restarted Tepmetko again, same script, but this time a fluid weight gain of 29 pounds, difficulty breathing landed me in hospital in congestive heart failure. Tepmetko stopped, Diuresis ensued with 32 pound weight loss, but infected legs.
Decision by Mayo to not restart drug, since lesions remained stable and many were still in process of disappearing.
That was in July 2025….,followup scans stable with no metastases. Most recent scan showed increasing density of left lower lobe lesion and increased size of lingula lesion.
After conferencing with oncology boys, planning to restart Tepmetko at an off label dosing schedule of 1/2 dose every 5 days, till my next scan October 1, 2026.
If side effects return, will most likely retreat from drug. If none appear will pray that scan on October 1, 2026 shows some positive improvements.
Wish me luck and I’ll let you all know what’s happening.
Restarting Tepmetko tomorrow September 1, 2026.
My best to all you warriors.

@hatterasj10202
I’ll be starting Tepmetko today Sept 1 as well, but for the first time. Hoping it will be successful. I didn’t know you could restart Tepmetko after cancer abates then progression begins again.
You have been through a lot! Good luck to both of us.

@popsue
Indeed. Best of everything to you. If I am able to share any questions you may have, reach out to me,