Neratinib

Hi 

I was diagnosed with HER2 triple positive breast cancer March 2021; I've had chemo surgery and radiotherapy followed by a year taking herceptin- I now take zoldronic acid each day and amrazole tablet daily.  My oncologist asked me about taking another tablet as part of the preventive treatment- but turns out it's not that easy it's a years treatment regular heart scans blood tests and the side affects are supposed to be awful - because it's a relatively new drug there's not much to read in terms of its effectiveness- II must sound really ungrateful I'm not it's just I thought after the herceptin I would be 'treatment' free I'm exhausted- the chemo has affected my mobility greatly- I'm just waiting results from my 1st mammogram- my nodes were clear but 3 was removed as precaution- has anyone else taken this neratinib ? I'm so confused physically I'm not sure I can cope - sending love and positive thoughts to all whatever your situation 

  • Hello Yvonne and welcome to the forum.

    Hopefully some of our members who have taken Neratinib as part of their treatment will share their experiences and advice with you soon but if you'd like to talk this through with one of our cancer nurses, they'll be available from Tuesday onwards on 0808 800 4040 between 9a.m - 5p.m.

    I hope our community are able to help you come to a decision about this soon and that your mammogram results bring good news when they come through.

    Sending strength and positive thoughts to you too Yvonne.

    All the best,

    Steph, Cancer Chat Moderator

  • Hello, I've just read your post, I've had similar treatment and finished herceptin in October. I was offered Neratinib in November and after 13 days of taking, I have just spent the weekend in hospital after suffering from severe diarrhoea which the lopedimine didn't control. Did you decide to take neratinib and if so what is your experience?