Neratinib

Hi Veliz

I'll tag Sarah1111 as I believe she has been taking Neratinib / Nerlynx for a while but hasn't posted for around 3 weeks so may not check Mac emails often.

There is further info from NICE here and a summary of the drug itself at EMC here.

You could meanwhile type neratinib into the breast groups search bar to find any messages that mention it ?

Hope this is of some help for now, G n' J

Thanks Dreamthief, I’ve been busy homeschooling and it’s taken more time than my part time job!

Hi Veliz,

Yes, I was given the option of starting this as I hadn’t been given pertuzamab. I was keen to take it because my cancer was oestrogen positive and it seems to be more effective for that type.

I started it at the end of February and I’ve just had a consultation ready to start the fourth month. On the whole, it has been really straightforward. You’re probably aware that most people get diarrhoea. For the first couple of months at least, they prescribe three boxes of loperamide (Imodium) for each month of treatment. I was told to take two per day to try to prevent it happening, I found that I was fine for the first week and then it really hit me. I called the chemo line at the end of the day because I couldn’t leave the bathroom for long. They were really helpful and in hindsight, I should have taken more of the loperamide. Two tablets at the first bout and one for each episode, up to a maximum of 6per day. The loperamide really works. For the last two and a half months, I’ve had the occasional bout of diarrhoea, but taking two tablets has stopped it really quickly.  
I've also had a bit of a sore tongue every now and then and I use the green mouthwash that I was given during chemo to numb it.

Before each monthly cycle, I’ve had my blood taken (home visit now) and then a consultation (over the phone) to check that everything is OK. I’m also due a heart scan (like when you take Herceptin), but it’s been a bit delayed.

I always think that you don’t know how your body will respond to a drug. The constant I speak to always checks each month whether I want to continue. You could always try it and see how you get on.

I hope all goes well if you give it a try.

Best wishes,

Sarah.

Hi Veraliz

I too have been offered this drug to follow on from Herceptin.  I have my last 18th Herceptin tomorrow. Bit  concerned about mouth problems, suffered bad with my mouth during chemo and my tounge is still not back to normal. Think I will give it a try and see how I get on with the diarrhoea.

Jill

Thank you for your very informative reply. Providing my consultant is willing to prescribe it I am happy to give it a go. Does lt have an impact on shielding

veraliz

Thank you so much for all your information. Has it has an impact on your shielding? I had pneumonia twice whilst on treatment. Nevertheless if the consultant is willing to prescribe I am more than willing to give it my best shot

veraliz

Thank you  I did look at NICE and got my niece to read up on it too as she is a health professional. I think if the consultant is will to prescribe then I will go ahead

veraliz