Hiya , I am 38 and was diagnosed with stage 1A triple positive breast cancer in September 2022, I only have 3 more Herceptin to go and then I have been offered neratinib for 1 year after that , the trouble is after doing something research and reading up other ladies experiences with it I’m really put off , my body is really sensitive when it comes to side effects I usually get lots , I had a wide local excision lumpectomy with partial reconstruction, chemotherapy which left me on morphine ,needing blood transfusions, dehydrated most the time infection after infection ,a blood clot on my lung and so on, 20 sessions of radiotherapy left me with burns but was not too bad , 6 months after finishing chemotherapy I caught covid for the first time and had neutropenic sepsis with it , I’m 10 months since finishing chemotherapy and 8 months into tamoxifen , I just feel so ill and rough all the time and the thought of starting neratinib is just not appealing to me and I feel awful for saying that , on 1 hand I think I was only stage 1A with clear nodes , on the other hand I want all the protection I can get , my team are still holding off on the zoladex injections because my moods were abit all over the place in the earlier months of taking tamoxifen, they are worried what it might do to my moods , I did want to give them a try , any advice from ladies who have taken neratinib I would really appreciate it ,thanks for reading
Welcome to the forum Michelle , you sound like you’ve had a really rough time with the treatments you’ve had so far . I don’t know anything about the side effects from this drug personally ,hopefully someone will be able to help by sharing their own experience . You could also get the thoughts of the Breast Cancer Now nurses in the Ask our Nurses your questions section or by giving them a ring .Hope things improve for you .
Hi there, it’s sounds like you’re having a really rough time.
Sorry if this is a bit late replying to your post, but I’ve not been feeling in a headspace to join in the forum until recently. I was offered Neratinib following previous treatments of wide excision, chemo
Plus Herceptin, and radiotherapy. Am on ibandronic acid and anastrazole daily as I am positive for everything 
I was really suffering with fatigue for a few months after radio, but it gradually improved. Just as I thought I’d finished the trips to hospital, I was offered Neratinib… I decided to try it and the first month -6weeks was horrible, terrible diarrhoea and no real warning other than lots of gurgling! There are other things that come and go plus it can make you a bit immunocompromised. My nails are terrible and my poor mucus membrane in my nostrils are so sore that they have little nose bleeds. I had the dose reduced by a tiny amount and I still take loperamide to help with diarrhoea. Now 3/4 of the year gone and I am on count down to getting away on a holiday!
Although they may push for you to start it asap, in the guidance it does say to start within a year of having Herceptin. So maybe you need a little recovery time? I didn’t as knew I wouldn’t want to if I had a break. The nurses may be able to advise on this, but may also depend on your hospital policy. Good luck x