Anyone taking neratinib (Nerlynx) for cervical cancer HER2 mutation?

I haven't taken neratinib, but I was on a different kinase inhibitor as part of a clinical trial. It caused HORRENDOUS diarrhea for me (8 Imodium and 3 Lomotil per day didn't really control it at its worst.) This was a surprise, because diarrhea isn't usually my problem. But apparently other people on the trial didn't have nearly as bad a problem. So these drugs seem to have different effects on different people.

I would be prepared to pretty much stay home for a month while you're figuring out how to control it. Also, I learned that if I hadn't taken enough Imodium the day before, there was nothing I could do that day to control it.

And for me, it took 9 days for the diarrhea to start, so it may take a while to see how it will be long-term.

Hopefully it won't be anywhere near that bad for you.

@margitdill It's good to see you back here and letting us know where you are in your treatment. @val64 provided you with some helpful advice on staying home for awhile until you know how your body reacts to this new treatment. And yet, it's very possible you could be one of the people who don't experience diarrhea to that extent.
Still, being prepared is good advice. In your place I would wear an adult incontinence product (adult diaper) that is super-absorbent if I need to leave the house. I was prepared to do that when I had sudden bouts of diarrhea during radiation therapy.

I never resorted to diapers. My experience involved huge volumes of liquid and was actually quite frightening. I would drink a bottle of Gatorade afterwards. I went through lots of Gatorade.

The one saving grace of my experience was that diarrhea was not a problem at all while I was sleeping for some reason. The floodgates opened in the morning.

Again, I probably had about the worst possible experience, and it seems unlikely it will be that bad for you.

@naturegirl5 thank you! I’m well stocked on diapers due to my overactive bladder! Now this … praying it won’t be super bad!

@val64 thank you so much!

@margitdill I hope, too, that you will be one of the people who don't experience diarrhea. Sounds like you are very prepared.

@val64 your experience sounds exactly like mine. Especially the diarrhea part. I did not know all that about Imodium - taking it the day before. Thank you.

@margitdill
I'm sorry to hear that. Hopefully you'll figure out what you need to do to control it so that you can have a life.

@val64 thank you very much! So far the digestive issue has happened only twice. It’s not every day. My oncologist advised reducing my dose of NERLYNX. So I’m doing that. It does make me feel yucky, however. A bit worse than chemotherapy.