Anyone been prescribed Neratinib (Nerlynx)?

[Hoosergirl0301]

Hello ladies! I'm new here and have triple positive breast cancer. I've done chemo, surgery and radiation. Now that my Herceptin is finished my doctor wants me to take Neratinib for a year, but I just can't get past the diarrhea side effect! I'm not sure I can be tied to my bathroom for a whole year! And from what I've read, the risk doesn't really outweigh the benefit! I'm interested in hearing your feedback!

[carolinenailsea]

Hi Hoosergirl. I am not sure you will find anyone on this site to help you as mostly this is triple negative rather than triple positive. Maybe try the main site. I hope you get something useful, a year in the loo doesnt sound much fun. Caroline best wishes.

[RuthJ]

Sorry I haven’t even heard of it. Good luck

[jackearls1000]

Hello ...from what i can see its for HER2 positive ..and for people who cant take herceptin ....personally i think you should make an appointment to see your consultant ...or even your doctor and ask some questions ...write them down before you see them ...or if you cant wait ...call the breastancer.org nurses ...they were brilliant with me and made things a bit more understandable ....good luck and hope you get the info you need ...in the mean time maybe take an Imodium to help with your tummy problems ...it might settle down after a bit of time ....best wishes to you xxx

[Hidden]

Hi I’m new here too but also triple positive. I had surgery, chemo and year of herceptin which ended September 2017. I’m on tamoxifen for 5 yrs and hate it! Have not heard about neratinib so will check it out. I was stage 1 premenopausal at diagnosis now having thickening of uterine lining so having biopsy tomorrow. Just when I thought I’d be done with tests they’re back. Hope you get answers sounds like the info on neratinib is miixed so discontinuing it for quality of life makes sense. If I could stop tamoxifen I would tomorrow but oncologists wants me to take for 5 yrs since I was very high on estrogen receptors 95%. Apparently tamoxifen can causes changes in uterine lining too which needs to be monitored. Hang in there!