Hi,
I’ve been on Tamoxifen for nearly 2 years and I’ve suffered a load of side effects. Another 8 years of that is out of the question.
My oncologist has offered for me to swap over to Neratinib which I would only have to take for one year. However, the side effects are sickness and diarrhea amongst other things.
Do any of you have experience of Neratinib and is it manageable?
Thank you.
Hi Seaside Sar
i know a couple of people who have recently started on neratinib after finishing chemo and radiotherapy for her2+ … they are however also still taking letrozole…so maybe difficult to compare with you… they both say they have had loose bowels and when they ‘ gotta go…they gotta go right now’ … but they managing…think it’s helpful that they WFH…so always close to a loo… they also have been told to shield and they are back to taking their temperatures daily ( as with chemo) and having monthly bloods and assessment at the chemo unit…they are now following a restrictive diet with this drug…low fibre…no Whole meal or seedy bread…no fruit or veg…No oats, granola bran etc… but they are both happy to continue with this for a year if symptoms don’t get any worse. I’m sure someone will come along soon with first hand experience to give you a better idea. Good luck