Hello, I’m new to the forum. I was diagnosed with breast cancer in September, lumpectomy, 3 lymph nodes removed, Her 2 negative, then consultant decided I needed mastectomy. Put on letrazole and coping ok with minimal side effects. I had 1 week of radiotherapy, no chemotherapy needed in my case. I now have to start Abemaciclib 150mg for 2 years however I’m a little hesitant as the side effects sound horrendous. I’m trying to understand this drug and how peeps are coping with the side effects and how bad they actually are and how much they can affect daily life.
Best wishes to you all x
Hi, don’t be too worried as they can lower the dose if side effects are bad. Most people complain of some degree of diarrhoea. I had diarrhoea for 4 months but reduced down to 100mg and then it improved. The main issue is the urgency of the diarrhoea so if you’re out and about, you don’t get much warning and you need to get to a toilet quickly as you’ll have very little control!! Although sometimes I had stomach pains beforehand which was a good warning! But I feel it’s manageable so don’t worry. You can always wear a pad for safety and always carry Imodium xxx
Hi im also on abemaciclib but for secondary BC. I was on 150mg for 4 months. Initially coped well with it, occasionally taking immodium. The diahorrea symptoms increased and when i spoke to my Bc nurse she saud quality if life is important too so took me off it for a break and said she would reduce dose to 100mg. However i was put om 50mg 2 weeks ago. I was a bit concerned about this but was told that it works regardless of the dose. I dont quite understand this. Im doing ok on the 50mg, Occasional cramps. I take an immodium and im fine after that. So if you cant cope with the 150mg tell your nurse or oncologist immediately, don’t put up with it. Someone told me the benefits will probably be lost too, which makes sense. Hope you get on ok. X
Thank you so much xx
Thanks for your reply xx
Would lihe to hear how u get on. Xx
I’m seeing BC nurse next Tuesday to start Abemaciclib, I was supposed to start last week but needed more time to understand the whole process. Everything has happened very fast as I was diagnosed in September, I had routine mammograms every 2 years due to family history and my last one was only 8 months prior to me finding a lump. They found another one behind the initial lump I found. So much to process in a short time. I’ll keep you posted. Xx
Its devastating news for sure, but you do eventually get your head round it. Its good that you didn’t have to go thru chemo. Abemaciclib ive been told is one of the newer drugs and has very good results. Im on it for as long as it works, so. Im hoping for good things. The fear never leaves completely but when treatment is over and life gets back to a kind of normality you can put it to the back of your mind…uiu have to so you can carry on enjoying life. I really do wish you the best. X
Hi
I finished my two years of Abemaciclib in December. It’s not an easy drug but I managed full time work and two young kids. You get used to food triggers and can avoid. Take it with food, not on an empty stomach if you have nausea.
It does tire you out a bit. I was getting on fine but have bags of energy now it’s finished, even on exemestane and Zoladex.
Good luck- go in to it with an open mind…and spare underwear 
I heard spare pants are a good idea! Made me smile 
x
Hi @1966080605
Sorry to hear about your BC diagnosis…
Here is a thread I started back in 2022 when I had to take Abemaciclib…hopefully, you will find it useful…
Take care and wishing you all the best for your treatment. Xxx
that made me chuckle!!
Hi, I joined the facebook group for Abemecilib months in advance as I wanted to know the good and bad. You tend to hear more from people having a hard time.
I started in November 2024 along with letrezole and I had no side-effects for the first few weeks.
There was 1 day when I had stomach cramping and it’s nothing like I had ever felt. I hadnt eaten my usual breakfast and had grabbed too many sweet pastries whilst running around.
I didn’t get cramps again until about 2 weeks later when I took it on an empty stomach. It says to take with or without food and given how much worse these cramps were I have learned that for me it is always after food.
I was on 150mg but had to stop after about 7 weeks as my neutrophils had tanked to 0.5. I was feeling fine in myself and doing my daily exercise.
I will be restarting next week on 100mg
My advice would be drink a tonne of water. I drink about 3-5 litres a day. I drink before taking it then tonnes with and after the tablet. I like to think it eases the toxicity a little for my stomach and kidneys.
I still eat a very high fibre diet and breakfast and seem to have been spared diarrhoea.
Take it with food and keep exercising every day. Yoga esp helps counter any joint aches from reduced oestrogen.
You will have your bloods monitored and just keep track of any side-effects and tell your team as my oncologist said there’s no need to brave it as the dose can be reduced.
I keep both loperamide and buscopan in my car and by my bed just in case and I haven’t stopped my normal busy out and about lifestyle.
Good luck!