Ok ladies ... I need you to weigh in.
Has anyone out there taken Neratinib oral chemo? I have to make a decision soon. See details below.
I am in treatment for HER2+ breast cancer (invasive ductal) stage 2b/3. It was a large tumor and satellite tumor and was in some lymph nodes. I’ve had chemo/immunotherapy, bilateral mastectomy/reconstruction (removal of 6 nodes), radiation, and am currently receiving immunotherapy (I have 3 left to complete 12). All pathology and… read more
I am very familiar with nerlynx. I took it two different times. The first time I took 6 pills at once. I was told that is just how it is done. In about 2 weeks I was hospitalized for dehydration from diarrhea. I tried it again and am doing well on it. I am slightly weak and a little tired. The diarrhea is managable. The difference this time is, I started taking 1 pill for a week, then 2 pills the next week until I got to 6 pills. I also took budesonide, immodium and lomotil. I really think it depends on how this drug is administered!!! I have been on it since March.
I finished my year of neratinib in July. My biggest problem was diarrhea. I dealt with it and made it through. I could have taken more anti-diarrhea Meds along with it as recommended, but it constipated me. I opted to deal with the diarrhea. Your system may be different.
It actually wasn't terrible and I was willing to do anything for cancer not to show its ugly face again. I have dealt with it twice already.
Good luck !
Everyone is different, do what you feel best for you! 💞
Hi BigD, I hope you are doing well on this drug. I finish in March. I have experienced other side effects than diarrhea the last few months but have been able to manage them. Nose sores, looks like papercuts on my finger tips that are sore and muscle cramps. This last month, acne. Vaseline for nose and fingertips (with bandaid) at night. Also during the day, liquid bandage for fingertips. One immodium a day takes care of any diarrhea for me. Wishing you and all on this drug all the best!
This March marks a full year of taking this drug. My diarrhea is very well controlled. I have noticed on the sides of the tips of my fingers I have a place or two that looks like a wide paper cut. They are sore. I manage with vasoline and a bandaid at night. I also use liquid bandage product sometimes during the day.These come and go on my fingers. The inside of my nose is red and has sores. I use vasoline up my nose to help. All in all I have done pretty good on this drug. I am not as tired anymore either. I am looking forward to coming off of it though. Wishing you all the best!
Hello! I've been taking Nerlynx for three months. The first month was tough as far as the diarrhea side effect but I am now doing well. I take two imodium every morning and another before my evening meal. I often drink orange juice with my meals because I've noticed it helps prevent the D. Other than the D I have nail problems, ingrown toenails and very thin nails which break or peel off as soon as they grow past the quick. I take the pills with my evening meal and I think they actually help me sleep soundly! Some people have terrible fatigue with this drug, but I only noticed that the first few weeks. My hair has grown back nice and thick and the Nerlynx has no effect on it.