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Neratinib side effects

KJS1310
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I was diagnosed with HER2+ breast cancer in May 2018, I finished my Herceptin treatment in August 2019. After a call with my oncologist in July 2020 I'm now on day 11 taking Neratinib, on day 4 I had 1 bout of diarrhoea which continued the same for the next 3 days & was manageable with Loperamide, day 8 I felt really nauseous and that evening I started vomiting, this continued all the next day, which was my daughter birthday and ruined her celebrations I had no appetite and couldn't even keep water down, I called my GP who prescribed anti sickness medication and 2 days later I'm finally starting to feel better.  Sorry for the essay, but has anyone been on this medication for a few months, who can tell me if the side effects subside? Im

seriously considering calling my oncologist to discuss stopping them.

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    Hi I am currently having a break started on 6 awful diarrhoea even with 6 loperamide horrible acne like rash on nose and nausea, had a break went back on with 5 same again also with mouth ulcers, oncologist said I could try 4 but no less  I'm still sitting on the fence with this one at the moment.  There is a facebook group Nerlynx (Naratinib) Support Group which you may find useful though a lot of people in this group are from the USA as it has been around a lot longer there than here also they tend to do things slightly differentky to us dosage etc.  They say if you can manage the first couple of months it gets easier, let me know what you decide to do and good luck just thinking a about those horrible red tablets makes me feel yuk

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    Same pattern of side effects as myself. I'm really hopeful that my body will start to adjust to the meds.  Feeling very tired also.

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    Hi

    I started on the little red devils yesterday  8th September along with anti diarrhoea and anti sickness. Today i thought well i feel ok so didnt take any anti diarrhoea. Now im thinking this wasnt a good idea so will be back on it properly tomorrow. Think I was expecting instant diarrhoea and worried about being constipated if I take all the anti diarrhoea. Ive felt so tired but im assuming that could be because ive felt  very anxious about taking them and not wanting to go back to feeling poorly again. This Cancer Journey  is flippin long.

    Sorry I cant offer any advice about the side effects and if they reduce.  I really hope they do for you.  Im thinking of going back to work in a few weeks as Ive been off nearly 2 years following all my treatments. I really hope I can  manage. 

    How are you feeling now? Any better?

     

  • Offline in reply to A.lewis

    Hi

    I started on neratinib 2 weeks ago. I've been quite diligent in taking the  anti diarrhea tablets, so far I've been ok. Lost all appetite, and lost 4lbs in two weeks. But I'm much better than I thought I would be. I seem to be surviving on fish, toast, and. Corn flakes at the moment . The first week I slept most of the time, reminded me of when I was on chemo, but that's better this week, although I'm still going to bed at least once a during the day. This is my third year of my cancer journey, I don't like to call it a battle, that means someone loses.

    I hope you've been able to cope with this treatment. Sending best wishes, it's a struggle but I suppose we have to do it for our families.

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