I wish they had started me off at half dose but they through me straight in a 6 tablets then dropped to 5 which was a little better but I am sure the way you are doing it is much better. Good luck x
Sounds like you had a rotten time on it🙄 I’m into my 4 th week on half dose, coping with the side effects ok for now but not looking forward to being on full dose after my review on Friday . Like you I’ll give it a good go but you have to be able to get on with your life, we’ve been through so much over the last year or two haven’t we. Xx
Hi, I started Neratanib 3 weeks ago and up to now I’m doing ok. I’m only on half the dose until the oncologist reviews it on Friday, depending on my blood results. I’ve had a few side effects, such as diarrhoea, tummy pain and I’ve felt a bit sick a few times. I’ve managed to control the diarrhoea ok with the loperamide so it not been to much of a problem. I have felt more tired and my joint pain that I already have from the letrozole seems a little worse.
I’m expecting the effects to get worse if they up the dose, not sure weather they will put it up to the full 6 tablets. I’ll let you know how I get on. Xx
Hi, I did start it but after 5 months with the agreement of Oncology stopped. The side effects for me were a bit rough. The diarrhoea was manageable but I had fatigue, sore mouth, irritability and I took 2 UTI's, 1 at 3 months in and again at 5 months and because of them I stopped. I really wish I could have Continued as it is supposed to be really good, hopefully 5 months is better than none.
I would give it a go, you might not react the same as everyone is different. I just felt I couldn't do another 6 months with bloods every 4 weeks and no quality of life when they said I had probably had enough and didn't need it.
Good luck and keep in touch xx
Hi, did you start the neratanib and what is your experience? I thought I would be finished treatment in dec 2021 my one year of Herceptin after chemo Nov 20-mar 21, surgery may 21 (lumpectomy 3cm and 7 nodes, 2 positive in pre assessment &took extra, results clear margins and NED ) and radiation July 21?however in my last chemo review my oncologist has recommended neratanib. Only covered for my case by trial until end of dec so I need to decide- she said she would support either approach and if I’m “done”. Side effects seem daunting.
Thanks Fruaich that’s given me a bit of reassurance. I finish my Herceptin last week. Unfortunately I was in hospital a few weeks ago with a campylobacter infection, first they thought it was appendicitis, just shows how low my immunity is, so I’ve had my share of chronic diarrhoea for a while.
Ive decided to give it a go, like you said what’s one more year. I’m going to wait until after my holidays in September, not booked anything yet but we usually drive to south of France, don’t fancy long journeys planning around toilet stops 😳 thanks love 💕
I am now just about to finish my 3rd month on Neratinib and it has its moments 😕 but manageable. I get a bit of fatigue just like when on Chemo and diarrhea can be an issue. I found knowing my body helped and a bit of juggling loperamide which the give you loads of. They say it is worth taking if you can and I feel what's 1 more year if it keeps the devil away. Good luck xx
I’ve just been told that when I finish the herceptin in June the consultant wants me to start taking Neratanib. Apparently this is a similar type of drug that I will take for a year. I was hoping to just be taking letrozole and the ibandronic acid and not start something else. I’ve still got a lot of joint pain and other side effects, I’m not sure which drug either herceptin or letrozole is causing what side effect, so I was looking forward to just being on one. Has anyone been on Neratanib and what side effects have you had please. I’ve looked online and it doesn’t look pleasant 🙄I know my BC was high grade HER2 positive and obviously want to reduce the risk of it coming back., but I really thought I was close to the finish line for at least one drug.