Neratinib

Hi Clarissa,

Thanks for taking the time to post how you’ve found it so far. That made me feel a lot less anxious about taking them and will keep an eye on the Imodium dose. I suffered constipation on chemo and do not want to go there again! 
Good luck with the remainder of your tablets and very pleased you are experiencing minimal side effects.

Have a good weekend! xx

More then happy to help , it’s a confusing journey isn’t it! But as I’ve said personally I’ve not found it as grime as it is reported. Good luck with the tablets, I hope you have a smooth ride, keep us updated. 

You have a great weekend as well ️ xxx

Frustrated to report that I really struggled with my first cycle of neratinib and after chatting with my oncologist will not be continuing. Even tried a dose reduction with little luck. It wasn’t the diarrhoea (although this did hit me on day 6 and had 8 episodes in a matter of hours!) It was the less common side effects, severe tiredness/light headedness, bordering on confusion for most of the day after taking it. My Onco had not experienced this with any other ladies so I think it is a rare occurrence. I did have the option of reducing the dose down even further and trying again, but my life, my choice, and just felt with that reaction it might be doing more harm than good elsewhere in my body.. 

So I continue with my 5 years of hormone reducing meds and have just had my 1st yearly mammogram post surgery which was all good! 

Catriona1Best wishes to you both moving forward and very grateful to have connected with you over the Neratinib question!  

I’m so sorry to hear that you have suffered so much taking this drug and for all the side effects you have had. As you say you have to weigh up your options and make the right choices for you. The min thing is that you gave it a chance and it wasn’t for you.

Really pleased to hear your 1st mammogram was clear, my first one was last January and like yourself clear so I know how that feels   

I wish you well and stay in touch if you feel like you want someone to talk to ️xxx

Interested to read this thread as my oncologist has suggested I take this when I finish my Herceptin injections in December. I too read aboutthe horrendous side effects and did speak to my BCN about it. She said it's often not as bad as it states on the side effects list.

I didn't realise that it's quite a new drug. I'll take it and see how I fair. I work in a primary school and my classroom is furthest away from the toilets, so that's a bit of a concern. I also spend most afternoons on my own with my class and have to send a message to other staff members if I need to go to the loo - so that should be interesting. 

Hi Jacala

I feel your apprehension about being so far from the toilets whilst at work! Hopeful you won’t suffer too much from diarrhoea or learn how to control it.

I hope it goes well for you, good luck ️ xx

I'm  so glad your mammogram was all clear. Sorry to hear your side effects were difficult on Neratinib. At least you know you gave it a shot and made the best decision for you. . I've had a change of heart and I'm  going to ask my onco if I can give it a try after all. All the best going forward Catriona xx

Hi Jacala

I hope you don't  have too many of the reported side effects on Neratinib. However if you do find it difficult in the classroom  reach out to your school and they will have to try and make adjustments to accommodate  your treatments. Best of luck on your continued Herceptin  cycles they are so much easier than the chemo on your body. I'll  let you know how I get along on the Neratinib  (if my oncologist  will still approve it for me.)