Just a note: having a PCR is not as significant as it is claimed to be regarding relapse risk. Meaning it’s not because you had PCR that your relapse risk is so much smaller! Many other elements come into play such the strength of the HER2 signal, grade etc. But I do understand the side effects issue. However, neratinib can prevent brain mets, which is a high risk in HER2, and much higher than in ER+ or TNBC cancers.

Thanks for your input. Like Kat, I had stage 3 HER2 with lymph node involvement. I achieved PcR in June, and just completed 5 weeks of radiation. I still have 5 months left to go on my herceptin/perjeta treatments. I recently started to research info about Neratinib and wondered if I should consider that after I complete my targeted therapy. Your feedback helps a lot. I will keep researching and also talk to my doc. Anything that can help prevent a recurrence, especially brain mets, is worth considering.

I'm just now seeing this. At first my medical oncologist wanted me to try neratinib after I had achieved a pathological complete response (stage 3a with lymph node involvement). Because of my stage and nodal involvement, I have a higher chance of recurrence but I did have a PCR. I talked to the PA and nurse oncologist and did a lot of research. There is not very much evidence to support giving people neratinib who have had a PCR. As mentioned above, the side effects (severe diarrhea in particular) do not sound great and the benefit, especially for those with PCR, is negligible. When I went for my last meeting after my final Herceptin/Perjeta treatment, my oncologist didn't bring up neratinib and I had pages of research that I was prepared to present (from studies) that suggested the benefit wouldn't have been great. I'm 1.5 years past treatment and 2.5 years past diagnosis and feel good. However, I did grapple with this decision but the PA and nurse oncologist both said people rarely stay on neratinib because of the side effects (at the time the onocology PA knew of one person who was on it and had to cut back because of the side effects) and, as I mentioned, there are no studies on patients who have had a PCR and the effectiveness of neratinib. There is benefit for those who have residual disease after chemo, targeted therapy, radiation, and surgery.

I was offered Nerlynx- but passed. One of the most common side effects with the drug is chronic diarrhea, I already have Crohns. I have been enjoying a legendary remission with the Crohns (which was severe enough that I had to have a bowel resection done in my 20's). I held my breath all through treatment- hoping nothing in my treatment was going to wake that sleeping bear. I just did not feel like pressing my luck for a up to a 2% improvement in risk. That side effect would not fit well with my job (working in a school where we can hardly get bathroom coverage anyway) or my volunteer activities, usually on trails, in parks, etc. Currently, I am 5 years out of treatment and so far, so good!

I have not taken it but would’ve liked to. It’s good at preventing brain mets and other mets. If you have the option to take it, I would.