Abemaciclib

Hi, I’m over a year on it and did struggle a lot with s/es in the first few months. 
I started in September 2024 after surgery then radiotherapy for a recurrence. They start you on maximum dose, and see how you cope. I asked to drop after the first 2 months, and asking about efficacy of a reduced dose. Apparently it’s fine at whatever dose you can tolerate? I think my oncologist had asked this from the company when it was on trial. 

Anyway, after a month on the middle dose I still hadn’t got my ‘mojo’ back so asked to drop again, they asked if I was sure or would like another month on 100mg. I was sure and dropped. I’m ok on 50mg dose, mojo isn’t quite up to my normal but I’m coping. The loperamide is needed still and my finger nails are ridged (that took quite a few months)  and they shed layers sometimes so keeping them short but not too short seems the answer for me. Try not to damage them as they don’t like it!!! 

Hugs xxx

Yes I heard that reducing the dose doesn’t change the efficiency of it so if that is the case what’s the point on giving a high dose. Makes no sense! 

I have been on it for 4months . Couldn't tolerate 150mg felt awful .sickness stomach cramps and diarrhea.reduced to 100mg after 3weeks .

Seem to tolerate it better still stomach cramps and slight nausea no diarrhea thank god but don't feel like my old self .

I felt better during chemo if I'm honest .

I'll stick it out for another few months then re consider the benefits.

Every one thinks after surgery chemo and radiotherapy you are done but that was only the first part of this journey we find ourselves on .

Oh gosh poor you. I know it is supposed to be a fantastic drug and got excellent results in trials but no one has mentioned to me by what percentage it can reduce recurrence by. I definitely want to stay on it as long as I can as I had a high oncotype which is worrying but it’s not nice not feeling like yourself. 

Yes that is true, people assume once you ring the bell all is ok and the end but these other treatments can be just as hard if not harder. 

I think the trial standard, therefore the NHS standard when they approved it, was to start always on maximum dose and reduce as needed. I was worried I’d get ‘tied’ to the hospital for those monthly bloods but after I seemed stable on the lowest dose they were happy for me to have several boxes at a time. Welcome as I’d booked 3 weeks away in Yorkshire in my moho in April so began 3 boxes at a time in the beginning of March. 

You do learn how to cope with the s/es, honestly. Just accept that it’s helping! (At 80 years old my Onco had calmly told me that chemo would kill me!!!) Actually, doing an E-Gym circuit today informed me that my age was 65!?! 

Hugs xxx

Yes I feel like I’m still at the hospital a lot  I know it is a good drug, I am sure I will get used to it and the side effects will become my new normal soon. 

I’ve seen your name pop up quite a bit, I didn’t know you were 80. You are strong  

I’ve been on it for 19 months. The first few weeks were difficult, particularly the diarrhoea, but awful abdominal pain and some dizziness. My symptoms settled right down, but I’ve stayed fairly tired, with watery eyes, phlegm in throat and sniffy nose. I’m still on the 150mg dose and made a pitch in October to have it reduced as I had been very run down last winter with coughs and colds. The oncologist said my blood tests didn’t really warrant a dose reduction and I have accepted that and carry on with the original dose. I want to get the most benefit possible from being on this drug and I have the impression that dose reduction is fine, but when the body is really struggling. Anyway I’ll see how I am at my next review in January -it was February,March and April this year that I just always had an ailment on the go!

All the best. xxx

Thank you for commenting. You have been on it a while, you give me hope it will get better. 

I had dizziness also and a headache. Not felt 100% at all. 

Yes, I really am pretty ok on it overall and glad to be taking it. The first few weeks were difficult to be sure, I made my diet a bit smoother and blander, but was able to eat as normal after the first couple of months.
I  keep active and walk a lot but have occasionally found myself just not feeling like doing things that I had been looking forward to doing and then being a bit fed up with myself! I’m hoping to gradually feel more energetic after I finish in early May.

All the best. xxx

Hi there, I have been on and off this drug for a few months now, firstly due to an infection from a dental extraction.  I’m currently taking a break as it has really upset my bowel, I previously had mild IBS, but at the moment I have bloody stool so I’ve to have that checked. The main side effects have been diarrhoea and terrible fatigue. I think the plan is to reduce my dosage once bowel calms down. I see other people have reduced the dosage and it’s helped.