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Any HER2+ ladies taking Nerlynx?

Hi, I'm Debra G.

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!

  • Post #1
  • Mon Sep 9, 2019
Hi, I'm Julie W

I am HER+ as well but have not been given this drug as an option after my Herceptin, but they did offer Neuratinin with a 2% addt’l chance. Same side effect was relayed. I’m sorry I’m not of any help, but am very interested in hearing feedback as well.

  • Post #2
  • Thu Sep 12, 2019

I am her2+ i am on letrozole for 5 yrs but nothing else was mentioned. what are those additional drugs for? HER2+ specifically?

  • Post #3
  • Mon Nov 11, 2019
Hi, I'm HOWhopeful

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!

  • Post #4
  • Sun Nov 17, 2019
Hi, I'm KimV

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.

  • Post #5
  • Sun Nov 17, 2019
Hi, I'm HOWhopeful

I don’t know where the ‘2% reduced chance’ stat came from.

Here is an updated study….

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.

  • Post #6
  • Sat Nov 23, 2019

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