Nerlynx

Norsken82070

I was diagnosed with Stage I DCIS/IDC, Left breast, 1cm, Stage IA, Grade 3, 0/4 nodes, ER+/PR+, HER2+ on November 7, 2016. I went through six rounds of Carboplatin (Paraplatin), Taxotere (docetaxel), and Herceptin and then 11 more Herceptin infusions. I am about to finish my last Herceptin infusion on November 10, 2017. I also had a lumpectomy in May 2017 and short course of radiation (16 treatments with 4 boost). I also currently started taking Tamoxifen in July 2017. I responded well to all of the treatments and even had a complete pathological response from the lab work from my lumpectomy. I had very few complications and feel 100% again.

I though that I was coming to the end of my year of treatment and now my oncologist is recommending that I start Nerlynx in December for a year. I am not sure if I should take it. The drug was just approved in July 2017 and I don't know what patients experience with it is. Is there anyone else that is HER2+ that has been perscriebed Nerlynx and can tell me what to expect if I decide to go on this drug regiment?

LagerthaLothbrok

I came on this morning to ask the same thing. I was prescribed Nerlynx at my onco visit yesterday and it sounds like a good idea...is anyone else using it yet

GingerChi

I've been on Nerlynx for 9 days. My side effects have been minimal. I had diarrhea on days 3 and 9, but its manageable and I'm not taking Imodium every day, only taking as needed. I've experienced no nausea, and my appetite is good. I'm taking my dose at night, experience tiredness some days, but not overly so. I'm able to work with no issues. Will see MO next week for labs, hoping liver enzymes check out ok.

LagerthaLothbrok

Good to hear! I start mine next week (finally got approval through the insurance company). They're recommending Imodium preventively. Now I'm not sure which way to go..

NotHerToo

I appreciate you all bringing this up. My MO is suggesting I start this in the spring after Herceptin. I would love to take a little break in between to see how I feel. It appears that most did have a break. Hope it is successful and few side effects.

WarriorLT

Hello, I am Stage 3, Grade 3 Her2+, completed an aggressive chemo treatment, radiation, and 1 year of Herceptin. Started Nerlynx a week ago. I am more concerned about the long term impact on my body and weighing its value. The more I read about the Nerlynx study, the more I am considering dropping the treatment.

The truth is, with such a small study, not differentiated by cancer profile, and its newness, we don't know what kind of long term impact this drug will have. Am already experiencing horrible post treatment effects on my body daily from chemo/radiation. Will Nerlynx only add to the existing issues and does the benefit outweigh the risk. Google HealthNewsReview site with term Nerlynx. Also, Europe did not approve Nerlynx and this gives me further pause.

Hate to sound negative but hopefully worth consideration.

Healing blessings to you all.

NotHerToo

I feel I should update. After my MO researched further, he did not recommend it in my case. Being early stage er/pr negative, he didn't feel that the benefit outweighed the risk. After reading more myself, I was relieved because it didn't seem like enough research to warrant the small potential that it might help.