Had a week off abemaciclib because of pre-booked holiday…started again before heading to airport within 12 hours first diarrhoea and abdo pains! Much faster than previously when taking up treatment in 1st cycle. Narrowly avoided disaster but feel grateful to macdonalds and a certain waitrose garage for allowing me to monopolise their facilities. As a result I’ve had to accept greater loss of autonomy and shorter journeys when alone.
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Hi Moonsox,
Thanks that’s a good point about the seasons, I hadn’t made that connection! Before chemo I felt like I used moult a heck of a lot and wondered how I still had hair on my head! So maybe it’s just getting back to normal but alarming me because it’s been so long since any normal moulting (my chemo hair loss started on 8th September 2022, the same day HM Queen Elizabeth II passed away, weirdly! And a week later that was the end of that!) I did try the cold cap on my first chemo treatment but sadly it didn’t work, which I put down to the fact that my hair was quite thin and fine to start with by that time.
Even though the spring in my part of the world doesn’t feel at all like spring with lots of wind and rain, it is still getting lighter and a bit warmer so maybe that is having an impact 
Xx
Hi onelumpor2,
Yes I’m having exactly the same where I’m having like a cluster of days with constipation and then a few with diarrhoea. I’m only really using loperamide if the abdominal discomfort is too much or if I am going out and about and want to avoid any accident risks. The first time I started back on the meds after a break, due to neutropenia, the diarrhoea came back with a vengeance after about 3 days which was much faster than when I first ever took it. That was still on the 150mg. I had just gone up to the shops, not 15 minutes from home, and had a terrible accident followed by an awful dizzy turn. After that I’ve made sure to take precautions if I’m unfamiliar with where the nearest facilities are! Thank goodness for McD’s and Waitrose helping you out! After my accident, I realised there are local pubs I could have dashed into, I’m sure they would have understood, but stupidly thought I could make it home. I almost had a similar but much less mortifying episode recently when I hadn’t prepared since I just realised I had to go out to collect a prescription for a med I’d run out of (not an oncology med). I didn’t make it to the pharmacy as had to turn back and wouldn’t have got there before they closed.
Needless to say, I find the constipation phase far easier to manage!
The abdominal discomfort and spasms can be pretty intense, it is so nice when they stop and I can settle down again. I guess there’s just no way around these side effects, but rest assured you’re definitely not alone in going through the hair-raising urgency situation! 
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Hi Siggi and all -
I just started Verzenios in March. It’s only been a month and like many of you I have diahrreas almost every day. I take 150mg twice a day and my Oncologist asked me to be a bit more patient and see if the side effects will improve ; if not she will decrease the dose. It’s not that bad but because I’m not (yet) able to predict when I will have an episode, it scares me and I will for example not want to spend a day in the mountains. I hope things will get better and if not then I will agree to decrease the dose. I want to try a bit longer bc of all of the clinical studies showing the advantage of taking verzenios on top of letrozole. I’m at high risk of recurrence so I think it’s worth it.
One thing I haven’t read in this community is something about weight. Are you all able to keep your weight stable? I only take this drug for a month and I lost almost 2kgs… i guess mostly water ? I try to drink more but it worries me. I took an appt with a nutritionist to see what I can do… How is it for you?
Hi unfortunately no sign of weightloss so far! Twelve stone is not terribly overweight but they aren’t going to disappear!
Hi lovely ladies,
I too am on abemaciclib 150g dose since Feb this year after being diagnosed with sbc back in Dec. The diarrhea has been troublesome at times with a few awkward moments of trying to get to a toilet in time, so far no really accidents beginning to recognise the cramp symptoms shortly before a episode, which isnt nice but has been helpful in some ways whilst out and about.
Also just recently been diagnosed with mild diverticulitis, caused by diarrhea and swinging other way constipation brought on by pain meds. Apparently diverticultis is quite a common condition in ppl age ranging from 40-80 lol, antibiotics later has eased the symptoms but has made the motions worse, so feeling pretty crappy at the moment, as had to up my fiber intake to help.
Regarding weight well, not sure if abemaciclib or fulvestrant/denosumb but my weight has increased by a stone already, anyone else experiencing weight gain even with diarrhea?
Just caught in a vicious circle …
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@marie911
I also lost just over a stone after starting abemaciclib. The consultant was loath to let me continue at 150 mg dose but I negotiated a month reprieve and now eat little and often, take loperamide if more than one episode in a day, eat higher fat foods and I have managed to plateau my weight. I’m just about a year in now and still on 150mg twice daily.
Just be aware if you continue to lose, the consultants may have no choice but to reduce the dose so keep up with your dietician.
Good luck
Laura
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Thank you for sharing and happy you could plateau your weight. I’m working on mine but at least the nutritionist told me I don’t have any vitamin or nutrients deficiencies, now I need more protein intake and continue to exercise regularly
I feel for you!! I lost 80% of my hair despite cold capping and dont want to lose hair/ eye lashes again! I’m due to start in a month…
Hi all,
I’ve been on Abemacliclib for 8 months now and like most of you, I’m now fluctuating between diarrhoea and constipation. Diarrhoea has been much more manageable now though and don’t really need Loperamide. But I nearly had an accident the other day, I had no warning (no stomach cramps like I used to have) and had to run to a public toilet!! I’m on crutches cos I fell and broke my pelvis (I’m only 56)!! So having to run to the loo on crutches was a nightmare that I don’t want to repeat!! I wear a pad when I go out now just to feel safer!!
What fun we are all having on these meds!! X
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Hi not sure if my tips will help, I’m an early riser - due to having animals to feed. But I take the Abemaciclib one hour after my fexofenadine/antihistamine ie 4am, my letrozole between 9 - 10 am, then abemaciclib at 4 pm.
My bowel movement generally occurs between 5 and 6 am daily. If i’m late with the letrozole then it can occur later in the day. i wonder if the letrozole - bungs up or slows down the bowel. I was advised that letrozole constipates you and the abemaciclib can give you the squits. Perhaps it might be worth playing around with the times you take those early doses - dependant on your work schedule -. I hope this helps. I’ve been doing this for the last 15 months successfully. good luck and keep me posted, Moonsox xxxx love and light, n hugs.
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Hi moonsox,
Thanks for the advice, think I will try changing when I take the tablets to see if it helps. Although I’m not an early riser like you!! I usually get up at 9ish (after years of getting up at 5am for work) I love my lie ins! I’ve had to retire early, there’s no way I could work now with these aching legs and brain fog!! (I was a nurse)
Take care xxx
Hi i dont mean for you to get up when i do, . the important thing is the gap between when you wake/get up and then take the next tablet.
ie i rise 3am and take at 9-10 ie 6 to 7 hours later.
hope this helps, M xxx
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