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
Hi Michelle,
I wondered did you decide to try Neratinib? My 24 year old daughter has been offered it and thinks she will give it a try but is delaying starting until September so she can finish at uni. She is very anxious like you about the potential side effects. I would be interested to hear how you are coping if you have started.
Sending lots of good wishes. M x
Hi Michelle, I would also be interested to know if you tried it?
I’ve been put on it alongside Exemestane, I had triple positive BC, grade 3, stage 3. Started chemo Sept 23 ( EC and paclitaxel) then lumpectomy and full node clearance last March. Was switched from Phesgo to Kadcyla and finished that in Feb this year.
Oncologist has insisted that I try Neratinib but I was really uncertain as I also had major stomach issues on lackitaxel that resulted in an abcess and sepsis- so am already a bit traumatised and sensitive about needing the loo with urgency.
I’ve made it a week and a half on the tablets and have already decided to take a break for the next two days as I was in the office on Monday and had to deal with an upset stomach, despite taking the loperamide as prescribed. I couldn’t leave the office until gone 6:30pm to be confident it had passed and I could make my train home. I’ve got to be in the office again tomorrow so made the decision to not take it for a couple of days, I just can’t risk it happening again, my anxiety is through the roof as it is.
I just can’t understand how people live any sort of life while on this medication, I realise my stomach may be more sensitive than the average person, but it seems so unpredictable. I am really struggling to connect with anyone else who has successfully taken it so really welcome any input!
Sorry for the essay!
Sarah x
I’m so sorry for not replying back , my dad was diagnosed with pancreatic cancer shortly after I made this post , I just wanted to say that I did not try neratinib, I was already doubtful and for me I wanted to feel the best I could to be there for my dad , I hope all you ladies are doing ok
Hi Sarah,
How are you coping with the medication now?
My daughter is due to start end Sept and is very anxious about side effects. Any tips or advice with hiw to cope would be much appreciated!
Best wishes
M x
Hi Maria,
I’m so sorry for taking a while to come back to you, I was hesitant to share a negative experience and put your daughter off trying.
I managed 9 days on Neratinib and gave up. I spoke about my various complications up thread- it did such a number on my anxiety and stress levels that I decided to cut my losses. I couldn’t trust the loperamide (it doesn’t always work for me), and I truly felt like I wouldn’t be able to confidently leave the house while I was on it.
My decision was timed with the weekend that the articles on studies about eating well and exercise also having a similar impact on recurrence rates were published, so in discussion with my oncologist we decided that would be a better approach to take for me.
I’m sorry I can’t share a positive story- if I’m honest, I think it’s quite telling that they are really hard to find!
Wishing your daughter all the luck- it’s worth trying, as everyone’s systems are different, but such a personal decision regarding tolerances and priorities.
Sarah xx