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Having a positive experience on Neratinib

13 May 2022 22:15

I'm 7 months into a one year course of Neratinib to prevent recurrence of breast cancer. When I was offered it, I searched  the forums for information and there was very little out there apart from a few horror stories of chronic diarrhoea as the main side effect. So I wanted to share my experience to reassure people that it's really not that bad. Of course, everyone will have a different response  

I started on 3 Imodium a day with the 6 Neratinib tablets, and the pharmacist said I could take up to 6. I'm now down to 1 or 2 Imodium a day. I can go for about 4 days with just one a day, but bowel movements get a bit soft and I get VERY gassy!! So I go back up to 2. So you do need to accept that the Imodium is essential with this treatment. 
However, contrary to some other posts, I've never had an accident or a time when I couldn't get off the loo, or had diarrhoea in my sleep as one poor poster said. I even took a week off work at the start expecting to be running to the loo but it didn't happen. I did get tummy ache, and at times, quite painful stomach cramps. But I haven't had any for a few months. I was also quite constipated at the start due to the Imodium working too well! 
I'm back working my full hours as a primary teacher and haven't needed to run to the loo once at work. Just begin to get a bit gassy late afternoon, especially if I've had something with lots of fibre. And I will have the odd loose bowel movement if I eat loads of fruit and veg and beans, but it's not a big  deal, and will be at my normal toilet time rather than an emergency toilet run.  At the start I didn't fancy fruit as it felt a bit sharp on the tummy, so be gentle with yourself. Now I eat anything I like. 
So if you're worried about starting Neratinib, give it a go, and hopefully, your experience will be a positive one too. 
Good luck, friends. 

Having a positive experience on Neratinib

15 May 2022 16:17 in response to Jemima24

Hey Jemima, 

I was just reading your post and I'm so pleased that your experience with Neratinib over the last 7 months has been a positive one.

I'm sure our members who are about to embark on this course of treatment will really appreciate your insight so thank you for sharing your journey with us and I hope the next 5 months continue to be trouble free. 

If you have any questions about your treatment or need to have a quick chat with someone, then our team of cancer nurses are a just a phone call away on 0808 800 4040, Monday - Friday (except bank holidays) between 9a.m - 5p.m.

Kind regards,

Steph, Cancer Chat Moderator