Any HER2+ ladies taking Nerlynx?
I have finished all my treatment including chemo, lumpectomy, radiation, and Herceptin. The window of opportunity for me to take this additional drug is closing. I have been hesitant, trying to weigh out whether the 2% additional chance of non-recurrence is worth the side effects (horrible diarrhea). I’d appreciate anyone who would be open to sharing their experience. Or even if you have been offered this drug and decided not to take it. Thanks so much! Blessings!
I was 41, diagnosed triple positive stage 3c in 7/2017. After chemo, double mastectomy, radiation, and 2 separate cellulitis infections in each ,expander, and in more surgery to remove them due to the infection…I thought I was done. Except of course anastrozole and zoledex for 10 years…. my oncologist surprised me with NERLYNX!! (For those who had herceptin) She had been involved with the trials of this drug, and thought it was a great addition to reduce recurrence . So I said yes. The diarrhea is insane. I have to take colestipol to mange it. It leaves me feeling generally unwell….however, I am terrified of recurrence , and want to be here for my now 10 and 12 year old kiddos.
I only have 3 more months, it is a year long oral pill treatment. Here’s to hoping it has been worth all of the yucky tummy issues!! Good luck!
I am HER2+++ and am only in the third phase of my chemo, still having to go through radiation and the Herceptin treatments, but at this stage of my chemo the diarrhea is almost debilitating. This is the first I’ve heard of these additional drugs following the Herceptin treatment, but I don’t believe I’ll opt for anything after this for an additional 2% less chance of recurrence. My kids are grown, and I’d probably think differently if they weren’t, but this discomfort and uncertainty day to day is too difficult for me.
I don’t know where the ‘2% reduced chance’ stat came from.
Here is an updated study….https://www.prnewswire.com/news-releases/new-early-breast-cancer-drug-to-reduce-risk-of-recurrence-or-death-approved-for-australian-women1-300813726.html
From my understanding, there is am overall 42% reduced risk of invasive recurrence or death after an additional 5 years, for those treated with Nerlynx.