Neratinib

Hi Pink Betty 

I'm not on this drug but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

While you're waiting for replies, if you type 'Neratinib' into the search function at the top of the page you can read other posts which mention it.

All the best 

Hello.I did the full 12 months of Neratinib in 2021-2022. Seems like a lifetime ago! It was much less scary than the internet suggested and entirely doable. The hospital pharmacist did a long phone call with me and her advice was amazing ( and different to the general advice from the oncologist).  She said to take 6 loperamide a day to start with ( don’t buy Imodium, it’s too expensive. Get it from the pound shop if the hospital don’t give you enough).  She instructed me to take 2x loperamide in the morning, 2x at 4pm and 2 at bedtime.  The oncologist only said to take it when needed. IGNORE such advice. You need to be pre-loaded with loperamide to avoid the diarrhoea. This worked well for me and I only had the runs occasionally. With trial and error, I got the loperamide down to two a day. Yes, there were explosive moments and volcanic gas!! ( Always pass wind over a toilet!!!!!!!) but I didn’t have any accidents at all over the year. I did get quite severe tummy cramps about four months in.  But this seemed to pass. I did stop treatment once when I had covid, and stupidly stopped the loperamide also. Big mistake as the Neratinib is still in your system. So if you need to stop for any reason, keep taking the loperamide. I took it for a couple of months after finishing the 12 months, and weaned myself off. 
Obviously everyone reacts differently to their treatment, but I wanted to balance the horror stories with my very boring experience. I worked as a primary school teacher through the whole time and had to be released once a month for a 15 minute phone call consultation with oncologist. 
I feel very privileged and grateful to have had this extremely expensive treatment. I don’t know how much protection it will give me, but I’ll have anything going. So give it a go, be prepared for the most explosive farts you’ve ever done and the year will fly by! Good luck, my friends.