Abemaciclib... the treatment continues

Hi SteffiG

Just to reassure you a little - there are several of us on here taking Abemaciclib for primary breast cancer and managing the side effects okay. I was concerned when I read all all of the  side effects but I have been taking the maximum dose of 150mg twice daily for 6 months and my only side effect has been the occasional having to rush to the loo. If side effects become too much they can also reduce the dosage workout affecting efficacy. Please don't hesitate to ask me any other questions if I can be of any help.

Best wishes 

Lizzie

Sorry it should have read without affecting efficacy

Hi SteffiG  I’ve been on Abemaciclib since Jan 2022 so not much longer to go now. My main side effect at the start was diarrhoea and I won’t lie, it was pretty intense for a while…maybe 4 weeks or so, but then it did ease off. Plus I got used to how my stomach felt and could plan when I needed to take Imodium. I had a little bit of nausea but that passed quickly and I didn’t need the anti sickness meds I was given.

I had a dose reduction in May 2023, after a short break, because mr neutrophils fell below 1. I’ve been on this ever since and it seems to suit me. Haven’t had any stomach issues and have felt pretty well.

I had a two week break in April this year when I had symmetry surgery and did notice that I felt more fatigued than I expected when I restarted.  I think that perhaps I’d got used to it, or maybe didn’t notice it quite so much having started Abemaciclib right after my active treatment finished (chemo, surgery, radiotherapy). Feel ok now though and my neuts reached the heady height of 3.1 at my last blood test a couple of weeks ago.

I’ve not had any issues with lowered immunity. I had Covid two months after starting and that was nothing more than a bad cold. Recovered quicker than my husband did! Since then I’ve had one cold late last year but don’t remember anything else. I spent 3 days away with family this year and one of them unknowingly had Covid at the time - I didn’t get it again and neither did anyone else. 

Hair and skin have been fine too. I kept some hair after using the cold cap, probably lost about 40-50% and it’s continued to grow well ever since. 

I was terrified of the side effects when I read them and told my oncologist I would stop if my hair fell out! He fully supported my view that I’d give it a try but if it made me feel and look awful, I’d stop. It’s so far worked out for me, let’s hope it does the job. 

Wishing you all the best, especially if you decide to give it a go xx

Dose reduction was in May 2022, not 2023…

thanks for posting this - I'm supposed to be starting Abemaciclib after my radiotherapy October - and the consultant mentioned the diahorrea being the troublesome factor with staying on it last week  - which had made me nervous - I was hoping to use some of my holiday before it expires at the end of the year once radio is over - but I think from what I've read on this thread travel by plane may be just too risky. I'd be please to hear how you get on with it.. Also wondering how this will effect my return to work...