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Neratinib for hER2 positive Hormone receptor positive breast cancer

3 REPLIES 3
floss
Member

Re: Neratinib for hER2 positive Hormone receptor positive breast cancer

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.

Aneeebel
Member

Re: Neratinib for hER2 positive Hormone receptor positive breast cancer

Hello Ladies

I was offered this treatment too.. however, after having an echocardiogram and a MUGA scan the ejection fraction in my heart is too low so I'm unable to go on it at the moment! 

Hopefully you'll get on okay Bibi and your Mum survivor01 and the side effects are kind to you! 

 

Aneeebel

 

💕💕💕💕💕💕

Bibi
Member

Re: Neratinib for hER2 positive Hormone receptor positive breast cancer

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

Thanks

Bibi

survivor01
Member

Neratinib for hER2 positive Hormone receptor positive breast cancer

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.   

https://www.nice.org.uk/guidance/ta612

https://www.medicines.org.uk/emc/product/10477/smpc

 

Hope this is helpful. Thank you.