Hello Survivor001

Thanks for sharing your post. I've had a look through the forum and I can't see that there are any women who have mentioned taking this drug, only 2 posts from the end of last year asking for advice on when it might be available. So obviously there are other women looking into taking this drug and I hope that anyone who comes across your post in the future finds it useful. 

You may find that you're able to connect with others who are taking this drug via a specific breast cancer forum such as this one. 

Best wishes to you and your Mum, 
Jenn
Cancer Chat moderator

Hi I have just seen your post and wondered how your mum is coping on Neratinib.  I collected my tablets from the hospital yesterday along with anti diarrhea and anti sickness tablets and LOTS of instructions!!   Most of the comments I have read are from people from the USA and nearly all of them comment that they didn't start taking the full 6 tablets until a few week in, if at all.   Numerous posts about diarrhoea and the problems they were having,  all very negative really .  I will certainly give it a go but what with the effects of anastrozole too not sure if I'm going to get very far..   Still I would love to hear from you or your mum.   Thanks. 

Hi moonpuddle I wasn't even aware of this drug until my last telephone appointment with my oncologist.  I hope that you hear soon about your application for Nerlynx and it gets approval,  I'm going to give it a good go and a year will soon fly by so hopefully I learn how to manage the side effects.  There's also a facebook page though the majority of people on there are from the USA their regime is slightly different from ours whereby they slowly work up to taking the 6 tablets where we start off on the full 6, maybe something to consider if you get to take this drug (I do hope you do).  Best wishes for the future and fingers crossed .

Hi

I  started on Neratinib in January and started on the full 6 tablets a day.  I took 2 Loperamide 3 times a day for the first 2 months, gradually reducing the dose of loperamide after this and I'm now only taking 2 Loperamide once a day. It''s important not to miss any dose of Loperamide in the first couple of months otherwise I'm told the diarrhea can be really bad. I was religous about taking them!

I had a bit of nausea but was given anti sickness tablets for that, and that only lasted the first month. 

I'm now 8 months in and no really bad side effects at all. I'm also on Anastrozol which I think is worse!

Hope you are getting on OK with yours.

Hi well started on 6 with 6 loperamide after day 5 very bad diarrhoea and a acne like rash on and around my nose.  Stopped for 10 days back on with 5 nerlynx and 6 loperamide day 5 very bad diarrhoea and again the rash felt absolutely awful.   No appetite and nausea couldnt even manage water.  Saw oncologist he thought it looked like an allergic reaction, agreed to have a longer break then try again back on 4 so we shall see.  Apparently 4 is the the minimum.  I'm glad you've managed to carry on with it and good luck for the future.

I get a few aches with Anastrozole more noticeable at night when in bed.  I find different brands can be very different too Accord v Teva.  

Hi.  Having started quite well on the Neratinib and Loperamide, was just feeling about icky and was passing motions once or twice every couple of days..then went three days and passed two large motions and have woken today with really bad diarrhoea.  The other problem is my appetite has been reducing a lot and I really like my food normally.  This is just a blip, but we'll have to see.  I'm due to go on holiday at the end of the week, so hope it is a temporary thing. This is day 11, so was lulled into a bit of a false sense of security.

Hi it sounds as though your doing okay I have read where it is suggested eat little and often if your appetite is effected perhaps keep a diary of what you eat to.try and identify what may be causing diarrhoea.  In my case everything .  Also there is the BRAC diet which is okay for a couple of days at a time if your struggling.  I'm going to start back on 4 in a couple of weeks hope I can do it this time .  I do miss my fruit a raw veg though.

Jo

Hi Pen800

i was encouraged to read your post as I have been offered Nerlynx after finishing my herceptin nearly two weeks ago but I feel unsure about what to do. I want to keep protected but having just gone thru all my treatment and started back to work today I feel scared of the side effects.  How have you been a few months on? Grateful for any advice. Thank you.

Hi Jenner

I understand your reluctance, I was the same after all the treatment I'd had the last thing I wanted was some more treatment with side effects. I decided to go ahead purely because I didn't want to look back and regret it at some point in the future.

I took a week off work and started on 6 tablets a day straight away. I took 2 Loperamide 3 times a day and that sorted out the diarrhea, I eventually got down to only 2 Loperamide a day after about 4 months. I would say you have to be sure to take the Loperamide regularly as if you miss a dose it can have dire consequences!

After about 2 weeks I felt quite sick but had some anit sickness tablets. That only lasted a short while. I also got tired more quickly but nothing too bad.

I dont know if I was just lucky as I have read about some people having much worse side effects but I can only tell you my experience.  I finished my year last December and have no lasting side effects from taking it.

I hope this helps, I sometimes think you only hear about the really bad experiences.  I suppose you also have to think of Covid, I was on the clinically vulnerable list because of Neratinib, so had to shield, but my Oncologist said this was because it was a new drug and they didnt kow how it might react with Covid, not because it lowered my immune system.

Also I have just remembered, at the start I was given some steroids to take for a month to help strengthen the digestive system, but not sure they're always prescribed. It may be worth mentioning to your oncologist if you decide to go ahead.

Wishing you all the best for the future whatever you decide x

Dear Pen800

I really appreciated your reply to me on this, thank you so much as, as you say it is sometimes only the negatives that get reported.

I feel like you that I ought to give it a try and even though I have started back to work this week in a school, I have half term coming up so may plan to start then so at least I am off work initially to get started.  It's encouraging that after a few months you were able to reduce the loperamide tablets as there's so many to take in addition to the neratinib and the tamoxifen.

I guess I'll need to amend my diet a bit too as I eat a lot of fibre in my breakfast so I'll research the best cereals to try that are low fibre. It will be a small price to pay.

I am glad you have finished your year on it - well done! and I hope that you are enjoying more freedom from having to take so many tablets.

thanks again, I hope I can get through like you did. X