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

Posted by mangolinda8191 @mangolinda8191, Jun 13 9:46am

I've been taking Tepmetko with breakfast (about 7 am) and a few hours later I'm VERY fatigued. By early evening, I've lost the fatigue and have trouble sleeping. Am I taking this Rx at the wrong time of day? Should I be taking it at dinner time and then going to bed when the fatigue strikes? Your experience please...

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mamajite | @mamajite | Jun 13 2:34pm

@mangolinda8191 this is a good question for the pharmacist at your cancer center. I had to experiment to find the best time of day to take my cancer medication.

Lisa, Volunteer Mentor | @lls8000 | Jun 16 12:59pm

Hi @mangolinda8191, These drugs all come with side effects that can be hard to live with, and each of us may react differently. Experimenting, as mamajite suggests, may be helpful. Have you thought about an evening dose, maybe with your dinner?

Colleen Young, Connect Director | @colleenyoung | Jun 26 8:05pm

@mangolinda8191, how are you doing? Did you make any changes to the time of day you take tepotinib (Tepmetko)?

mangolinda8191 | @mangolinda8191 | Jun 26 9:37pm

No, I haven't changed from taking it with breakfast. My dinner time is irregular and supposedly this Tepmetko likes very regular ingestion, with food. Do you have experience with Tepmetko? I'm wondering if I'm supposed to get accustomed to it after a while and my body will do fewer side effects? Right now the side effects are not overwhelming but I was just wondering if it gets better after a few months...

tinambor | @tinambor | Jun 28 9:52am

In reply to @mangolinda8191 "No, I haven't changed from taking it with breakfast. My dinner time is irregular and supposedly..." + (show)

@mangolinda8191 My spouse has taken it for 15 months so far. He takes it after his dinner meal, even though the exact time of dinner can vary. It's less like an antibiotic where the spacing needs to be more exact and more long-term, in my opinion, but don't ask your oncology team. Whether it gets easier? Not really, but it's been incredibly effective against his cancer. He went from a PET that showed metastatic disease in many locations to a PET six months later that showed no evidence of disease. His biggest side effects are edema (gets worse over time, so try to stay on top of it) fatigue, and sometimes nausea. Sending all my best your way. There is an active MET skipping 14 Facebook group, if that's your type of cancer. And MET crusaders online.

mangolinda8191 | @mangolinda8191 | Jun 28 10:39am

Thank you so much for your reply. This is the first time I've heard from someone, anywhere, who's actually been taking Tepmetko. Good to hear the caution about edema... but of course sorry to hear that it gets worse over time. WONDERFUL that his disease is improving so much.
I just had a CT scan after only 7 weeks of being on the Rx and the radiologist said the lung lesion was significantly smaller. Unfortunately some spots on my liver were also seen that hadn't been seen before so I'm now scheduled for an MRI on July 4 at 7:30 pm (!!!!).

tinambor | @tinambor | 6 days ago

In reply to @tinambor "@mangolinda8191 My spouse has taken it for 15 months so far. He takes it after his..." + (show)

@tinambor Oops, I meant DO ask your oncology team!

tinambor | @tinambor | 6 days ago

In reply to @mangolinda8191 "Thank you so much for your reply. This is the first time I've heard from someone,..." + (show)

@mangolinda8191 Do you have MET skipping 14 adenocarcinoma? Try not to panic about the spots on the liver. My spouse had new spots on his pancreas and it turned out not to be cancer. Hope is always good, I think!

mangolinda8191 | @mangolinda8191 | 3 hours ago

In reply to @tinambor "@mangolinda8191 Do you have MET skipping 14 adenocarcinoma? Try not to panic about the spots on..." + (show)

@tinambor Yes, I have the MET 14 exon skipping adenocarcinoma NSCLC. My biggest concern now is edema. My lower legs are really really swollen, red, uncomfortable. I elevate them when possible and all night. Also I stay quite active on my feet -- 5,000+ steps/day + pickleball. Seems to make no difference. My doc took me off Tepmetko entirely until the edema reduces significantly and then I'm supposed to resume at half-dosage.
Do you have any other recommendations -- home remedies? -- that might help? Other experience? Thanks!

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