Neratinib

Hi and a very warm welcome to the online community

I don't have any experience with this drug but I noticed that your post hadn't had any replies. By replying to you it will 'bump' your post back to the top of the first page where it'll be seen again.

I typed 'neratinib' into the search bar in this group and did find a few posts that mentioned it so you could do the same and reply to any where you think they may be able to give you more help.

I've also had a look on the internet and found this information from NICE dated 20 November 2019. You could also post your question in ask a nurse and one of Macmillan's specialist nurses will respond within 2 working days.

When you have a minute it would be really useful if could pop something about your journey so far into your profile as it helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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Hi Jessikins,

Yes, I’m hoping to be able to take this drug. I had her2, er and pr positive breast cancer. The tumour looked small on my scan and the lymph nodes looked fine, so I had surgery quickly, before the her2 results. There was a micro metastasis in one node. I had FEC-T chemo and I’ve got two herceptin to go. I spoke to my consultant  last week and I asked him about neratinib. He said that NICE have approved it under certain circumstances (including the tumour being oestrogen positive and having completed a year of herceptin). He said that he wants to, ‘throw everything at it,’ so he’s happy to prescribe it if they can get hold of it in practice. I have an appointment booked for January and he said he’ll update me then. He said that it’s main side effect is bad diarrhoea, but they can give medicine to counter it. I said that as long as it’s not as bad as chemo, I’ll take it!

How far through your treatment are you?

Best wishes,

Sarah.