Neratinib for hER2 positive Hormone receptor positive breast cancer

Going through breast cancer treatment Targeted therapies
1

Hi all, 

This is my first post on here, regarding treatments for early breast cancer for patients. My mum has recently completed herceptin following surgery for her breast cancer - and was offered a new treatment that reduces the risk of recurrence. The medication is called neratinib (nerlynx) and I just wondered if anyone has any experience on this drug?

I did some research on her behalf after discussion with the oncologist and found out that NICE have reimbursed this drug for all patients that are HER2 Positive & Hormone receptor positive, that have completed herceptin in the last 12 months, providing patients still had some disease present after surgery, if they had neo-adjuvant treatment. The data from the ExteNet trial suggests up to 50% relative reduction in risk of disease recurrence. The diarrhoea reported in the trial was high - but mum was told that it should be manageable if she takes an anti-diarrhoeal with treatment. It is also an oral treatment - so no IV, which is great for mum as she’s quite active!

I just thought I should share this information - for anyone who may wish to go back and have a discussion with their Nurse or oncologist. Below are the links for NICE guidance and Spc.   

nice.org.uk/guidance/ta612

medicines.org.uk/emc/product/10477/smpc

Hope this is helpful. Thank you.

2

Hi - I have also just been offered this treatment - wondering if anyone has started it and can give any feedback?

Thanks

Bibi

3

Hi, just read your message and thought I would add my experience. I was diagnosed in 2008 with her2 positive breast cancer. I was hormone negative though and had mastectomy with recon, chemo and radiotherapy followed by herceptin. After active treatment finished I was offered a place on the neratinib trial which I took part in. It was a random trial either you got it or a placebo. It was fairly evident that I got the drug as I got diarrhoea very quickly. I was given tablets to help but unfortunately it was so bad I was not able to continue on the trial. I understand that many people were able to cope with this side effect but I wasn’t. I think when you have had cancer you will try anything to avoid it coming back so I would advise anyone to give it a try but don’t be afraid to stop as everyone is different. Wishing you well with any treatment you are having.