Hello and well done for still being on the 150mg dosage, i dropped to 50 mg, and i can manage a normal bowel movment as long as i remember to have my letrozole between 9 - 10 hours after rising.
not sure which haribo yu have , is this the liquorice one, as they will make you go. Yes i too need 10 hours sleep, and have put on half a stone. i have to eat healthily due to Type 4 allergies, but recently in the cold weather have slipped to having too many puds with custard.
Sorry i forgot to thank you for coming back, better still relocating me. i donāt gon on the forum much, and the nurses have kindly sent me threads as i simply cant fathom how access the normal route.
As for exercise i manage 5-6 miles a week, unless snow on the ground, but do āfloor exercisesā before i get out of bed; ie reverse curls; sit ups, bridge, arm flexing. you are still warm and so donāt need a warm up.
Feel free to keep this thread open with me, should you want to ask more. but sounds like you are on track. At least you have family close which iām sure must help.
As for the menopause i sailed through mine before treatment, but i found the mediterranean diet helped plus being dairy intolerrant ie on soya.
keep up the good work, speak again soon? Love and hugs Moonsox xxx
I just wrote a separate post on this. Iām wondering if anyone on Verzenio is having more stomach problems from possibly eating eggs.
Hi all, hope itās ok to jump on the thread but just wondering if anyone has done the 2 years of abemaciclib abd did the diarrhoea last for the full length - Iām 8 months in, still on 150mgs but still getting diarrhoea and cramps a few times a week. I could take loperimide but then I go the other wayš¤¦š»āāļø
Also can you stage on abemaciclib for more than 2 years if not Stage 4? Thanks 
Hi
Iāve just started taking Abemaciclib just finished first month of it. I was previously on Ribociclib for 6 months but it was stopped because it caused lung inflammation.
This new tablet isnāt without harm either. I too have had the diarrhoea several times per week, and have noticed already healthy fibrous foods = more diarrhoea.
Along with this issue I also developed skin issues. A week a go I called the cancer hotline has my hands and fingers wer covered in little bumps and my hands were red and painful. Then my face went very dry around my eyes and mouthā¦e few days later a rash around my neck line. Iād been on the prescribed anti histamine after the Hotline instruction to see a GP.
So today I got my end if cycle phone call from the oncologist, saying I need to visit face to face next Friday to look at my hands. And subsequently take this week of the Abemaciclib.
They knew Iād called the hotline , surely they could have phoned me to visit today, rather than do the phone call consultation ā¦
So my point being if Iām not taking the drug for the next week and hands heal up, there will be nothing to examine next Friday.
The only fact will be not taking the pills stopped the skin issue and then what.???
Does anyone else have chronic back and neck pains taking this medication
Thanks
Regards
D
Hi Tired. I joined because I just found this forum and saw your question. Iām 3 months away from being done with the 2 year Abemaciclib therapy. Started at 150 and quickly reduced to 100. I can tell you that the diarrhea does not get much better. Three times a week is what Iāve averaged since getting the reduced dose. Neither does the fatigue. I saw my oncologist yesterday and he told me that I was the only person heād put on the therapy in the past 2 years thatās been able to stick it out. He said that based on the extensive studies done that this was the best treatment for me and if I could tough it out then the benefits should far outweigh the side effects. Iām also on Letrozole. Iām not going to lie. Itās been tough. It takes some dietary adjustments, day to day it seems, sometimes. Iām still adjusting but Iām almost there and you will be too before you know it. Good luck and keep moving forward.
Hi Almostthere,
Iām just beginning cycle 5 and today feeling very fatigued. Iām still on 150mgs, just received 3 months supply and reading that you have almost made it to the end has given me a boost-THANK YOU.
Can I just ask are they 24 or 26 cycles?
Hello @almostthere just wanted to say a massive well done on getting through abemaciclib.
Iām due to start abemaciclib a monthās time, in tandem with tamoxifen and radiotherapy. I finished chemo just before Xmas, and had aux lymph node clearance last week.
My thoughts are turning to my return to work. Did you work while on abemaciclib, and do you think it would be feasible to work on it full time with a full-on job? I am committed to giving my all to my treatment so I can stay well for my kids, so I want to give abemaciclib my best shot. Xxxx
Hi Annemanc
I am on cycle 11 of Abemaciclib and I carry on as normal working full time. The only side effect I get is sometimes having to rush to the loo but I manage this through not eating for 2 hours after taking the tablet and avoiding certain foods.
Best wishes
Bookie
Iām not sure what you mean by cycle 5 but when I finish I will have been on it 24 months. Is that 24 cycles? Or, maybe 26 because there are some 5 week months in there? So probably 26.
Thank you. It sure hasnāt been easy but hopefully worth it. I did not work outside the home. My husband has a small business that Iāve been working with him. I think it is doable but I would give it some time when you first start for your body to acclimate. The first few weeks I was on the higher dose, I literally could not function. Got better with the lower dose but still brutally tired a lot. Good luck.
Hi, thank you for replying. My oncologist refers to each 28 day pack as a cycle, I am just starting my 5th pack hence beginning cycle 5. I am sadly counting down each cycle and each time I have an appointment I forget to ask how many cycles they are as they are 26 four weeks in 2 years. I just donāt want to get to cycle 24 and find I have 2 more to go - pathetic I know. I am feeling a bit anxious as I have been given 3 packs of 150mgs and feel I canāt have a dose reduction if Iām desperate for 12 weeks. I do feel lightheaded and tired late afternoon. I try and do housework, exercise socialising before 2pm when I have energy. I also push myself too much at times, I have always been a determined character and sometimes this isnāt a good trait, I am trying to listen to my body and not be super woman. For me this is difficult!
Hi. I am pretty sure that there are 26 cycles. I asked a member of my oncology team at my last meeting.
I have to have monthly blood tests and am only given 28 days at a time (as they need to closely monitor our neutrophils and kidney function). I actually find it a pain having to go in every month for a blood test then a day or so later for my tablets, especially since my neutrophils havenāt dropped below 1 (despite being 1.1 after about a month, they are generally now between 1.4 and 1.6).
My friend, who lives locally and I met through breast cancer, is on abemaciclib too and she has twice had to go back for an extra blood test a week later due to an issue with her kidney function. They havenāt made her take a break each time, they have just checked. By her own admission, she doesnāt drink enough water, so perhaps thatās the issue for her. However, my kidney function seems to be fine so far, I am surprised to hear that you have been given 3 months tablets.
For a start, I hear the rrp is almost Ā£3000 a cycle, so if they do decide to reduce your dose due to side effects, what a waste of drugs and money.
Re: the issue with their hands that someone is experiencing, Iād suggest taking lots of pictures and show them when you go in. I suppose if the issue goes after you having a break for a week at least it narrows it down and tells you it probably is abemaciclib causing this issue and not something else.
I am just working a couple of hours a day and have been since diagnosis (I did that through chemo and radiotherapy etc). I have an 8 year old and 11 year old and my husband works long hours / often stays away.
I THINK but am not positive that I could manage much more hours (maybe full time) if I didnāt have my children. However, I think parenting them is more tiring than working (as I have an admin job I can do whenever from home).
I started in July 22 and havenāt quite worked out how many cycles I have left, although I havenāt had any gaps yet and am still on the full dose.
I am now getting diarrhoea every 3 days I would say on average. I donāt find that loperamide backs me up, so I take it so that I can carry on as normal (if I have a gym class booked, or the school run or a hospital appt etc).
I read somewhere (and I think I mentioned on this thread) that I have recently been having haribo jelly sweets sometimes before I take loperamide, sometimes instead, sometimes I have some after a couple of loperamide donāt seem to have kicked in. I read that someone was doing this and I do think it has eased my diarrhoea. I donāt know why, maybe because itās the opposite of fibre and healthy eating?
I have been fatigued, but since mid January have really upped my exercise and healthy eating and now feel so much better. I have noticed Iām starting to get pale (still on the full dose) and the exercise and healthier eating does seem to be making that less of an issue.
Hi, I agree with you that given the price of Abemaciclib I am also worried that if I need a dose reduction it would be a waste of money. Apparently my bloods are good, neutrophils 2.2 and WBC3.6, liver function and kidney function normal. However I went to a play barn for my grandson birthday party on Saturday (not the wisest thing to do) and Sunday evening I have developed what I think is norovirus. Just what you need when taking Abemaciclib. Monday I skipped Abemaciclib as I would have thrown it up. Iām feeling much better today, but although so far diarrhoea on Abemaciclib has been ok, this virus has been pay back. Iāve had 4 mgs of loperamide this morning. Iāve only once taken 4mgs, on the first cycle, and didnāt go to the loo for 4 days. Today that doesnāt seem a bad outcome. Anyway itās live and learn, husband taking a sample to hospital this morning.
Hi @almostthere thanks for answering. Honestly I thought I had a handle on it and then this week back to daily diarrhoea and stomach pains. I thought I found out that bread made it worse so I gave that up and now Iām thinking the brioche Iāve been having may be the recent trigger or possibly the apple cider vinegar Iāve been having every day. Neither Iāve had neither and I havenāt had a problem yet but stomach still aches a little. I will stick with it and stay on 150 but blimey itās hard work. Not to mention the anxiety that itās secondary 
.
Wish you all the best, youāre almost done 
Hi @almostthere sbd sorry if Iāve already listed this. Honestly my brain no longer works.
Thank you for coming back to me and bloody well done in almost getting through the hell of abemaciclib.
For 2 weeks now Iāve had pain and diarrhoea for about 1 week of it, on & off. I went to London on Saturday and was so scared I may have an accident. Sometimes I wonder if itās all worth it. I canāt move on while I still feel so ill and wrapped up in cancerland 
Hello to everyone. Iām new here and also not very computer literate - it took me ages to work out how to sign on and then how to post. Iāve just started on 50mg abemaciclib - less than a week and already horrible stomach cramps with or without diarrhoea. I am full of admiration for the stoicism of many of you who are coping with much worse. Does age have anything to do with adverse reactions? Iām 80 and every consultation starts ā At your ageā¦ā¦ā Iāve learned a lot from reading this forum. Thanks to all
Hello Sally and welcome!
I donāt know for sure if age has an impact on side effects, but I know that people are usually started on abemaciclib on 150mg, and then itās reduced if needed. Perhaps it is your age that made your doctor decide to start you in the lowest dose instead. Sorry to hear youāre having the horrible stomach cramp side effect, which is unfortunately the most common one along with diarrhoea. I hope that you donāt suffer too badly with the diarrhoea and that the stomach cramps settle.
Honestly I am finding it hard going on this med. I donāt know how much of my side effects might be due to the hormonal meds I also have to take, but the abemaciclib is basically my little scapegoat for feeling so godawful all the time!
I have found a reduction from 150mg to 100mg was initially really helpful, but then the fatigue came back with a vengeance. I am checking this chat again because I have noticed some increased hair loss lately and Iām trying to work out if itās excessive and because of this drug, or if itās just my hair getting back to normal after recovering from chemo. I finished chemo in January 2023 and when my hair grew back it didnāt moult at all. It started to moult again at the beginning of this year, but now I seem to be losing a fair bit. Itās not as dramatic as the chemo hair loss, but slightly alarming!
I hope you are all doing ok and getting through this grim journey 
Hi Beck
I too started on 15omg, then dropped to 100mg, but now on 50 mg. I get diarrhoea every 3-4th day after a 3 day period being clear, ie after taking the loperamide. Iāve learnt to recognise the signs pre normal bowel opening, and wind preceding some motions. i find doingā¦ not sure of name but deep breathing, helps manage symptoms. But on the hair front, i didnāt loose as much throughout chemo because i was on cold cap. once my hair grew back after treatment, and curly from straight. i monitored how much was normal shedding. yes i am losing a little more than normal at the moment but put this down to the season. Sorry to compare us with animals, but the horses are shedding their winter coat at the moment, and mammals also, iām monitoring if this is simple the same. Iām definately not losing as much as i did going through treatment, nor am i losing more than i did before chemo at this time of year. I hope this helps you bear with the change for now, but like me monitor it throughout summer. As yet i have only read one other entry where this has happened but that too was moving from winter to spring. Keep/be strong, love and hugs to you. Moonsox xx
Hi sorry to jump in here but have same issues here with diarrhoea and sort of abdo discomfort a bit like old period pains.
Finding it really hard to get any normal bowel motions. Swing from one extreme to another. Otherwise seem to be coping post treatment, lumpectomy, full lymph node clearance, radiotherapyā¦