hi i am due to start taking neratinib next week and wondered if anyone is on this drug and what are their experiences thanks

Hi @samkay2095  We’re sorry that you haven’t had a reply yet, I’m sure one of our Forum members will be in touch soon.

In the meantime you might be interested in our someone like me services - the Someone Like Me phone service can put you in touch with a volunteer who can support you by telephone. You’ll speak to someone who’s had a similar experience to you, who has finished their treatment and has been trained to help. We also have a Someone Like Me email service where a volunteer will support you by email correspondence.

Alternatively, you can ask one of our experts in the Ask Our Nurses area of the Forum and they can respond to you online.

Best wishes
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Hi Sam 

I have been taking Neratinib since April. Took a couple of weeks to get used to it but I am mostly fine now. 
I was a bit wary about starting it with the description of the side effects but it hasn’t been anything really bad- I take 1 loperamide a day to keep the diarrhoea at bay and 1 antisickness for nausea. 
It has affected my appetite and I find I don’t fancy lots of fruit and veg - bit of a bugger since I’m vegetarian  

Hope your first weeks haven’t been too bad. 
Take care 



I have started taking it just over 2 weeks ago. I was also really worried about the side effects but I have not had any of what I expected. I have even had to cut down on the loperimide as i was constipated . At first I was also really tired but that has settled since I reduced my loperimide. I am waiting for a review from my oncologist and my bloods but my first two weeks on it have not been bad at all!!!

Hope you are getting on alright with the drug :crossed_fingers:

I have just seen your post and wondered how you got on with the treatment? I have just started my 3rd month.