Neratinib

Hi Catriona1 sorry can't help you but I am replying so your posting gets bumped to the top in the hope you get an answer.  Love from Ann

Hello Catriona1

I am sorry to hear that you got disconcerting news. It is always unsettling when we are faced with things we were not expecting.

I have not had this drug. However, I do get herceptin, pertuzumab and letrozole ongoing for HER+ ER+. If you look these up there are a huge list of quite daunting side effects. I dont know about you, but I have not had any of them apart from a bit of swelling of my face/neck for a few days of each cycle of H&P and this then goes away without causing any problems, except to my vanity. 

The medics medico-legally have to list and warn us about every possible side-effect that anyone has ever had, but this does not mean that we will all go on to get them. Have you a chance to go back to discuss this further with your oncologist?

I presume that it will have been the full MDT who will have recommended this for you. They must believe that based on all the factors pertaining to your BC, that overall you would get more benefit than harm from taking neratinib.  Take your time to think about what they have told you and make a list of any questions you need answered, so that you fully understand why this is considered the best course for you.

Wishing you calm is the storm

All the best

WallyDug

Hi Catriona1,

Yes, I took neratinib for a year. I was keen to take it as I was still worried after all of the other treatments. I was diagnosed with early stage triple positive breast cancer in September 2018. I finished herceptin in February 2019 and then had a year of neratinib.

The only side effect I had was diarrhoea. The hospital give you lots of loperamide and it’s really important to take enough of it, especially to start with. I found that I could be fine for a week or two and then I’d have a bad stomach. 

Other than that, I felt fine. I think it’s worth taking it and seeing how you feel.

Best wishes,

Sarah

Hi Sarah,

Thank you so much for your reply.  It's  hard to know what to do. It's  good to hear from someone who has coped ok on neratinib. I think I may just get used to the idea of continuing my treatment for a while. I hope you have recovered  well from all your treatments.  Best wishes

Catriona 

Catriona1hello, I came across this post while replying to another post and searching to see if anyone else had taken neratinib. It is such a shock when you feel like you’re eating the end and then another drug is thrown at you. I have also been recommended it as I had a partial rather than complete response to chemo prior to surgery.  Lymph nodes were negative so the plan was Herceptin and then neratinib, otherwise I think it would have been to carry on with Herceptin & pertuzamab. 
Must admit I’m very wary of the diarrhoea side effect! Just wondering if you had started it yet and how you are getting on? 
I was hoping to return to the office in the new year! Not great if I have to keep running to the loo!! 
Take Care x

Thank you for your reply. 

I have spoken with a different  Oncologist since my Neratinib question.  She was able to advise me that here in Antrim they started 20  women on it last year & 8  ended up in hospital with  grade 4 diarrhoea and only 2 completed the  year due to the side effects.  My oncologist  when pushed on whether I should or should not   take it  was unable to give me  with my particular circumstance (my entire  cancer was removed with  the  original surgery & all the treatments are to prevent recurrence rather than cure) a definitive answer.   She said she wouldn't  be strongly encouraging me to start it as another woman like me who  experienced heart failure on Herceptin which later recovered had a new heart event on  Neratinb.  In the  end  I have decided to take a break from treatments at present  and decide  in the  springtime  if I will begin Neratinib in the  summer or not.  I have been able to return to the  office again and feel well for the  first time in 18 months but I think I may still decide to give the Neratinib a go later in 2022.  I would advise you to discuss your individual situation with  your medical team.  My  personal thoughts are it has to be worth a try  and you can  always stop taking it if the  side effects are too extreme.  

Catriona1thanks for the quick reply! I have a face to face with my onco next week to discuss! Your post is very helpful.  I do agree that it’s worth trying these and seeing how you get on but might be nice to take a break for a short while.

The Onco did tell me the cut off to start Neratinib is 2 years from the date of  first treatment of surgery which hopefully leaves you a bit of time to decide.    Good luck with any  future treatments.

Catriona

That does indeed, I started my journey Oct 2020. Thanks again that info has been really helpful. Well done on completing your Herceptin especially having suffered heart issues, glad to hear you are now feeling well and made it back to the office. 

All the best 

Charlotte