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.
i am supposed to be starting this in January. My oncologist agreed to put it off until then. My biggest concern is diarrhoea so I am interested to learn how it is affecting you?
So I Started Neratinib in September and like most I was massively fearing the diarrhoea side of things! I'm not going to lie the first 3 weeks were really quite hard I had very bad nausea and extreme tiredness but in regards to diarrhoea they load you up with loperamide and I went the other way so be careful with that one! I think because i had such bad nausea and very little appetite I only really wanted to eat beige food diarrhoea didn't really effect me until I started eating more normally (and I only have had about 3/4 episodes) but i quickly realised it seems to be really quite diet driven so I stopped eating acidic foods, anything rich, too much caffeine, I mean you can imagine the sorts of foods that you have to be careful with! Anyway after about 6-8 weeks I felt absolutley normal!!! And have started eating more varied food again....
Thanks for that, it is very useful. So few people seem to be on it so I can only see a bit of information online, it’s nice to hear first hand. They are giving me anti sickness meds as well, really thought the diarrhoea was the worst. I have said I will give it a go. What is a pain is that I have to go back to hospital each month for the prescription….apparently it’s not generally available on the nhs.
Yes not many people are on it because i believe if you've had phesgo you don't also have neratinib now, so I think it's mainly for us that had surgery first, chemo and just herceptin! You have to do bloods every month so they can check bloods all good and then you can take your next months dose but I do go to hospital every month for check up appt, bloods and prescription, I think mine will be going to 2 months soon....
Yes, that’s what my oncologist said. I had only Herceptin for 12 months, after surgery, chemo and radiotherapy in that order. He also told me that it is a very expensive drug, ie “thousands”!
Keep me updated how you get on and if it starts off really badly hopefully you will be like me and turn a corner after a few weeks (my oncologist was very clear to me that it was definitely worth perservering with) Jan probably a good month to start just make sure you have an empty diary, I didn't I had a weekend in London planned and all sorts and it was hard going!!!
