I started Abemaciclib 6 days ago; 150 mg, 2x daily. So far the symptoms I felt were light-headedness, abdominal pain and fatigue/low energy. I would love to hear from those who are on this med, i.e. what are your symptoms, and how do you cope. I feel miserable. Thanks so much. Hugs to you all.
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Hi Siggi
I have been on Abemaciclib for 3 months 150mg twice daily. My main side effect was having to rush to the loo every few days but this did settle down after a month or so. I now know what foods tend to trigger it and I am managing much better. Please be reassured as you probably know - if your side effects are really troubling you the oncologists can reduce the dosage without affecting the efficacy of the drug.
Best wishes
Bookie
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Hi,
I have just started my third cycle of abemaciclib.
cycle 1-diarrhoea every six days approx, take loperamide and fixed for next 3-4 days.
cycle 2-diarrhoea every three days approx, take loperamide and fixed for next 3 days.
cycle 3-diarrhoea every day, take loperamide, yesterday diarrhoea 4 times/bad cramps, need more loperamide to settle symptoms.
I had hoped my body would get used to med and each month would get better-seems like I’m still learning to manage. Want to stay with maximum dose so trying to work it all out.
any tips people have found?
are you all on because stage 3?
Laura
Hi All ?
Thought I would jump on here and let you know about my experience……
I am 8 months post treatment, yay, and all good so far. I had a difficult time on Abemaciclib and ended up loosing a lot of weight, which was good initially but then became an issue. I had 3 cycles of Abemaciclib but told to stop half way through the third (even after dose reductions). Because I reacted immediately with the dreaded D, which didn’t then let up, I was told by my Oncologist that I was ‘intolerant’ to the drug. Initially, I was upset and felt a great sense of failure that I couldn’t carry on with it but then realised that I couldn’t have continued anyway without becoming seriously ill ?. It took about two months post Abemaciclib for my digestive tract to recover and not suffer anymore D. We are all different and react differently to drugs sometimes. I think it’s great that you are all managing and continuing with Abemaciclib and wish you continued success.
My most recent scan shows all clear ?.
Take care everyone. ?
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Hi MLT21
Thanks for sharing your experience with Abemaciclib. Just wondering while you were on Abemaciclib, did you ever need to take anti diarrhea medication to control the D. So you were on it for about 2 1/2 months. How was your blood test during this time. Was your WBC affected? And the kidney /liver enzymes- were they affected too? Like you I suffered from severe D. My oncologist has recommended that I take a weeks break and after that to go on a reduced dosage which is 100 mg. Hopefully, with this lower dosage I get less frequent bouts of D. Thanks for letting us know that it takes about 2 months post Abemaciclib for your GI to get back to normal. So glad to hear that your scans are clear. Wishing you the best.
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One question i have before actually starting - Are any of you taking Acidophilus, which settles your gut bacteria. i’ve been on this for a while to protect against other drugs,
How regular are the cycles. My team dont seem able to confirm this to me, i’ve had my first bloods, and am due in a months time, but the cycle 1 and 2 have been quoted as only 2 weeks apart, is this normal.? I have type iv allergies so am very concerned about adverse reactions. I just spent 4 years trying to rid another issue and that was mainly because the medics didn’t listen, and i had to fight my own corner to get Safety Data sheets from some companies just to get the nitty gritty facts.
I did find the americans have better access to information.
lol Moonsox Tue 4.7
Hi, I am not taking acidophilus myself.
my cycle is 28 days, see consultant (bloods a day or two before attending) and they ask about my symptoms, review my bloods and then so far, give me another 28 days worth… no break, finish one pack and run next one straight on.
i was due bloods every 2 weeks but took 15 attempts to get sample so they allow me monthly.
So far, 28 days of tablets, bloods every 28 days, consultant every 28 days…
laura
Hi @Siggi
Yes, I took the prescribed Imodium but eventually it wasn’t having the desired effect. From the moment I took Abemaciclib the D started, so an immediate reaction, even after a break and dose reduction. I believe this is what determined my intolerance. My WBC was pretty normal but my liver / kidney function was affected. Mainly due to the D and dehydration. Even tried the FOD diet to see if it helped but I found it very difficult to eat anything and keep it down. So, disappointing that I am the 1 in a million that can’t take the drug, especially having breezed (relative term) through all other treatments. If I could have continued I would have. Anything to give me that extra anti recurrence boost and up my percentages is a good thing. All the best to you too.
Always look on the bright side……… ?
Thanks Laura that sounds more like it. Thats what i’m going to aim for. I’m not a guinea pig, and quite able to stand or politely demand how we move forward. I glean from your words that as long as you have a ddose you are on track, surely its better to start on a low dose then move up…
I’ll keep you posted once i start, lol xxx M
I asked, if the lower dose seems to work as good, why do we not all just take that… or start there and work up if necessary but advised that 150mg twice a day is still best, is what trial was based on and we should start there and work down if required…
maybe your oncologist will give different answer…
laura
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hi Laura et al
before I started on Abemaciclib I did ask my oncologist if I could start on the lower dose. The reply was that based on trial results, we start on 150mg , 2x daily. I am also on Letrozole; otherwise I would have to start on 200 mg. I took Abemaciclib 150mg , 2x daily for 3 weeks. I had severe diarrhea, up to 6 bouts a day. When I take immodium I get constipated. Sigh. The Abemaciclib was also causing me abdominal pain and low in energy. After hearing my adverse symptoms my oncologist finally agreed to reduce the dosage to 100 mg. However she asked me to take a weeks break before starting on the lower dosage. My WBC has dropped drastically. I haven’t stated on the 100 mg yet. Fingers crossed. Hugs to you all
I started Abemaciclib January 2023.
Managed 150mg twice a day for 2 months but the diarrhoea, fatigue, muscle aches and weakness were unmanageable so I reduced to 100 mg twice daily. I still felt tired but improved a little and bowels were more manageable.
I reduced further to 50 mg for a 2 month break from October to December 23 due to a big holiday and travel. Felt more normal again.
I have been back on the 100 mg for just over 2 months now and the general tiredness and intermittent abdominal cramps are back but both are very manageable. I have been told by my oncologist that the 100 mg is an effective dose.
My hair was growing back after finishing my chemo Oct 22 but it has gradually stopped growing on Abemaciclib and has got thinner and receded. I have decided to go back to wigs and scarves. Only 9 months more to go on this drug and symptoms are manageable with some lifestyle changes and hopefully its worth it. There is reasonable research coming out, see link below.
https://ascopubs.org/doi/10.1200/JCO.23.01994
Only time will tell how effective the drug is but need to keep positive.
Has anyone else had alopecia with the Abemaciclib?
Like you, hair started growing back after chemo - but Abemaciclib has stopped that! Eyelashes have also thinned.
Hi carol
I’m on abemaciclib for the long term 150mg X2 twice a day. My hair is thinning with it for sure. I have bought a couple of wigs as I’m struggling to feel nice with my own hair. I’ve been on since July and coping quite well. Occasional random bouts of D and I use loperamide which helps. I don’t know what my oncologist would say if I asked to be put on the lower dose due to hair thinning? I read a post a while ago and the lady said she found her hair improved when she was put on the low dose. If it works efficiently on 50mg then it shouldn’t be a problem? I’m struggling with all this uncertainty just now. 
Hi I do get tired but I find if I have a little 2 hour nap at the weekend that keeps me going through the week at work! Get a few mouth ulcers too but I use the mouth wash they give me which really helps. Apart from that not too bad. Starting fifth cycle tomorrow xx
Update on abemaciclib, I was so nervous of starting this due to comments but so far I am a bit more tired but no other symptoms and I feel very good. Also on anastrozole plus zometa and injection to reduce oestrogen.
Thought you don’t read about good news stories often, so thought I would post.
Hope everyone doing well on it.
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That’s great news. It’s nice to hear that you’re coping well with it. I haven’t started this yet but will start early next year and feel anxious as all I hear js people struggling with this.
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One thing I did do was give up caffeine on the advice of my oncologist. Last couple of years I struggled with caffeine anyway (despite only having one cup a day) as was causing issues and think it has really helped prevent any further problems or remove a vulnerability.
I hear you on the stress but my oncologist reassured me about her patients… only a small few were having issues. Other thing is reducing dosage doesn’t reduce the effectiveness. So that’s also an option.
Best of luck with it.
Following this thread as I’m starting Abemaciclib next week. Really was hoping to get back to work in a few weeks. Need to financially. Does this seem likely? I have a sickness meeting tomorrow and I want to be as honest as I can be with them.
Thank you xx