Hi everyone! I’m due to start Abemaciclib soon and I’ve read about all of the side effects (diarrhoea! Lovely…) So here goes, any postive experiences? I know people mainly post the bad stuff (i’m hoping!). Anyone on it and its not been too bad? Thanks!
I’ve been on it for about five or six months. When I started, I was really tired from radiotherapy, so they started me on the 100 mg dose. I had a few odd readings initially for my kidneys, so they kept me on that. I have had no real side effects (no diarrhoea) other than I’m tired, but I am also on Letrozole. I guess we are all different. Good luck! x
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I’ve been on it for 8-9 months, after I had finished radiotherapy. I was terrified before starting because of all the horror stories about having such bad diarrhoea they couldn’t leave the house etc, especially as I had quite a bad tummy at the beginning of chemo. Anyway, it wasn’t nearly as bad as expected. Initially I had some cramps and diarrhoea, especially if I had breakfast followed within a couple of hours with, for example, a milky coffee and croissant. If I didn’t eat too much at once I seemed to be ok. I made sure that every time I went out I had a purse with Loperamide and Paracetamol in it.
I did find that the diarrhoea was quite sudden ie. when you’ve gotta go, you’ve gotta go!!! Sorry TMI.
After 2 or 3 months it settled to about 1 day every 3 weeks of feeling a bit grotty.
I am also on Letrazole and was having quite a bit of pain in the neck and shoulders. They suggested i reduced the Abemaciclib to 100mgs as sometimes the combination of both drugs increases the pain. It’s worked very well!! I’ve also realised that perhaps I had more tummy symptoms than I realised as I’ve had nothing for the last 6 weeks.
Good luck xx
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I want to follow this thread. Abemaciclib is part of my ongoing treatment plan… but that’s way ahead of me. I only started chemo a couple of weeks ago, 1 down, 11 to go. Then I’ve got axillary node clearance surgery and radiotherapy to look forward to before I start Abemaciclib, Goserelin injections and Letrozole.
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This is hopeful!
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I’m on letrozole too. I was really settled on Ribociclib but it was quietly knackering my liver.. So abemaciclib is next. I just want to get back to work and normal life alongside treatment. This sounds do-able! Thanks for sharing
I haven’t found the Gosrelin injections or letrozole bad.. Hoping for much the same from abemaciclib! Hope your treatment goes well
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I think the thing with all these treatments is that they affect individuals in completely different ways so all you can do is try them and see what the effect is for you personally. It’s great to be able to come on the forum to see little tips and tricks others have used to solve issues. Also it’s vital to report problems to your team as there’s lots they can do to help with dose adjusting, providing Loperamide etc.
Lots of love xx
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You’re so right. At the end of the day, i’ll try anything! X
Hi they have to give you all the possibilities of side effects. and You don’t have to stay on the full 250mg, i eventually dropped to 50mg then remained on that.
Learn what is normal for you: I kept a log: Each Tablet to be had 12 hours apart. Letrozole i had after 6 hours. My Antihistamine was had one hour before my first Abemaciclib. And my supplements one hour after food.
Because i sent regular side e experienced before ea next telephone call, the team were able to decide sooner to drop the dose. depends if you are wiling to do this. Good luck and ask more questions if you wish. I finished my course last july.
Love and light Moonsox xxx
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I’m almost done with Abe, and I have to say I feel protected. I’ll be happy to stop because of the side effects (fatigue and diarrhea), but I know I’ll also feel anxious and afraid of a recurrence.
I had quite a lot of diarrhea when I was taking 150 mg twice a day. The good news is that you can lower the dose and it’s still effective. I now take 100 mg in the morning and 150 mg in the evening. I still sometimes have to run to the toilet, but I’ve been able to live a fairly normal life.
Good luck 
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Thanks for sharing this. I get the whole fear of not being on a drug anymore. Its very much a can’t live with it cant live without it situation! I’m hoping its not too punishing.. Starting it tomorrow. I’m prepared for the worst and hoping for the best.
Thanks everyone for your input!
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Good luck with starting it!!
I kept a diary from the first day I started it recording any side effects - mainly cramps or diarrhoea. If there was any I wrote what I ate, at what time and if I took any Loperamide.
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