I am about to start Neratinib for a year. Just wondered if anyone else is taking this and how they are finding it? Seems main side effect is diahorrea but it sounds as though it can be quite horrendous.
This hasn’t been offered to me but I’m only three doses into herceptin and have 6 sessions of chemo to go and then chemotherapy, I intend to ask about it at my next oncology appointment as I would be interested to know whether they use this. I understand it has been relatively recently approved. I’m sure others will be along who have been offered it or have experiences to share,
Hi Ronnie7, yes I had chemo and Phesgo (a joint drug of pertuzumad and trastuzumab) in order to have the opportunity to go on to neratinib I had to have that treatment. So far so good, I’m 2 days in and all is ok. My arm is a lot sorer on the op side and I’m not sure if it’s related to the tablets. It’s is quite a bundle of tablets for the first month but then it gets less as your body adjusts to things. It is worth chatting with your oncologist to see about the treatment as it’s another form of trying to prevent reoccurrence.
