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.
Hi and welcome to the Online Community, although I am sorry to see you finding us.
You may want to talk with people who are on the same journey so can I first highlight our very supportive Breast cancer group.
Posting in this group will open up your concerns to a wider group of people who know exactly what you are going through at the moment.
Follow the link I've created, join the group then introduce yourself to the group and post questions after selecting 'start a discussion' and you can also join in with existing conversations by clicking on 'reply'.
This site is organised into various support groups so we also ones that are general Cancer experience groups.
Can I also highly recommend our various Macmillan Support Line Services - you can call them free on 0808 808 00 00 This service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link and you may also find our Ask an Expert section helpful.
Talking to people face to face can help a lot so check to see if you have any Local Macmillan Support in your area or a Maggie’s Centre as these folks are amazing.
You may want to put some information in your profile as this can help a lot. Click here to see how to add details as this helps everyone to see a little about you and how best to reply to you.
All the very best.
