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Is Anyone Taking Nerlynx? What Is Your Experience With Diarrhea, A Very Common Side Effect?

A MyBCTeam Member asked a question 💭
Kaukauna, WI
December 1, 2018
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A MyBCTeam Member

I believe this Is this the new protocol for her2+ . When I was being treated in 2015, they only used Herceptin for the Her2+.

Exciting to hear of new protocols . :( On the possible diarrhea.

Hopefully others will chime in with their experiences.

Hugs to you!

December 2, 2018
A MyBCTeam Member

I would definitely take the anti diarrhea Meds along with it. I am taking about 1/2 pill daily to keep things under control. Some days I take nothing. Most times I'm good. My worst situation is when I workout (run or walk), diarrhea happens. I need to stop to go sometimes up to 3 times.
Good Luck with it.
I also am taking it despite the side effects because I did not want a recurrance. This is my second diagnosis already at this point.

December 19, 2018
A MyBCTeam Member

I'm getting ready to start it and I am concerned because I have IBSD.. so diarrhea is already a nightmare for me. But I'm going to try to take because I am terrified of a re-occurrence.

December 19, 2018
A MyBCTeam Member

That does stink. I hope it gets better. I'm planning to take nerlynx once my TCHP is done. I have read that it causes diarrhea in 95% of patients taking it. It's so new that there are not many on this site who take it, so you may not get a response.

I found this Q&A when I searched long-term use of Imodium online:

Question: How safe is it to ‘control’ my diarrhea with loperamide on an on-going basis? Can I take it daily (perhaps in the morning) for an indefinite period of time?

Answer: Your specific question is about the use of loperamide and this is an extraordinarily safe drug with very few side effects. About the only problem you can get with loperamide is constipation and that usually means you are taking too much

– Peter Whorwell, MD, University of Manchester, UK

So it seems to be a safe drug even taken daily. Hang in there! You are nearly half way through.

December 4, 2018 (edited)
A MyBCTeam Member

Yes, it was. I just was curious if I have to be taking this the whole time. I have gotten my dose down to 1/2 pill a day. I would just prefer not to be taking anything. Can't hardly be that good for your system to be taking this for a whole year.
My body has had enough crap put in it. If I can avoid any more, I'm all for it.

December 4, 2018

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