Hi I've been offered another tablet to take for a year , after all treatments had finished, just wandering if anyone has any experience of this tablet !
I can see that you made another post recently asking about this drug and trying to connect with others who had experience with it. I'm sorry that you've not had any responses as yet.
I used the forum search function to look for the term "neratinib" and I can see that there are a handful of posts where it is mentioned over the past year or so. You might find that if you have a look for those posts (using the search function) and commenting on one of them you may get a reply.
Just rejoined. Diagnosis 2018....T2N1M0, her and er positive cancer. 22 mm tumor and 3 positive lymph nodes. Grade 3.
Treatment.. Mastectomy, chose no reconstruction, lymph node clearance, FEC-T, herceptin, radiotherapy, still on zoledronic acid, letrozole and I'm also on neratinib. Started this in October as it was delayed in approval in Scotland due to Covid.
Everyone will have different experiences of every treatment and drug. My experience so far has been obviously the arthralgia with letrozole is ongoing. Fatigue in general ongoing from chemo which ended Jan 2019.
The side effects I think just coming from the neratinib has been bladder pain which hasn't managed to be controlled yet, now on drug 4 to try, had scan and not due to cancer recurrence or structure of urinary system, next step could be cystoscopy however I'm keen to avoid any more tests but I guess it could show irritated cells in the bladder. It's been put down to commencing neratinib rather than infection. My tongue has cracks which are resolving. The peripheral neuropathy I had with chemo has reappeared after many months of it disappearing. Perhaps most alarming was the discovery of a blood clot in my inferior vena cava which was coincidentally found during yet another scan to check for other things. I'm now on long term dalteparin for this and a yellow warning card has been sent by my oncology team. This is not to say it is definitely attributable to neratinib however no clot was seen on a scan taken just a few months prior. I have tested positive twice though for the lupus anticoagulant so it could be related more to this. They will look at it again once neratinib is finished to see if they can determine what's happened. Just the fact of cancer being involved makes clots more likely anyway regardless.
I am lucky in that despite having bought in enough loo rolls to create a staircase to my loft, I've not really been bothered by diarrhoea, I take one loperamide each morning just. No nausea or any other real issues.
Despite these issues, personally I still choose to continue with neratinib. I'm half way through and even a small reduction in risk of recurrence is worth it.
Hopefully this gives you an insight into one person's experience with neratinib. As I said everyone is different and if you need any more information I'm happy to help.
Hello thank you for your reply, I hope you are doing ok. I have started Neratinib now my first 2 weeks weren't too good . I was sick , very tired and constipated with the amount of loperamide I was told to take so was told to lower the dose and I was going mad with heartburn, so they prescribed lansoprazole which I take every day and not had heartburn since .then diahrea started and was still being sick , not too good at all first 2 wk but feeling better now, I'm just taking 2 loperamide every morning and going to the loo as normal with just the occasional diahrea where then I take extra loperamide after each episode. Feeling more tired than usual and leg joints ache but was told this is the letrozole , Having blood test every 2 week then phone or hospital appointment. Staying positive for the future with no reoccurrence ,
Tried Neratinib 3x unfortunately I suffered from severe diarrhoea, rashes and fatigue. Started on 6 then 5 then 4 unfortunately i wasn't able to tolerate it at one point I was taking 10 loperamide a day. There is a very good Facebook group which you could join though alot of people are from the USA there is some very good advice, tips etc you may find useful. Diet also seems to play a large part such as the BRAT diet. Good luck and I hope you are able to tolerate it as currently it is the only drug which can penetrate the blood brain barrier.
Thank you for your information.I hope you are doing ok, you say you couldn't tolerate it so did you stop with the Neratinib altogether then! I'm doing ok at the moment on the 6 tablets and having the occasional stomachache and diahrea. More tired than usual and leg joints ache but no rashes or mouth sores at present. I took your advice and joined a Facebook group thank you , take care
Hi hun I'm on it now and boy I have never felt this tired in my life and I'm not even doing anything, toilet is where I live now as I'm having bad diarrhoea despite taking loperamide 3x a day, still getting sick but manageable. If this medicine will add many many more years to our life then I'm ready to endure all this.. Speak to your Consultant for further advise. x
Hello, oh dear hope it settles down soon for you, I've been ok now seems to have settled down, noticing cracked sore fingers past week . Not got as much energy as I used to have and if I've been busy one day I feel shattered the day after so I usually just rest up .fall asleep regular early evening can't keep my eyes open lol. I hope you are ok and it soon settles down x
