Hi everyone. Finished my chemo and Ratio T last week and was silently celebrating the end of horrible treaments but just had an apt with my oncologist and he has informed me of the side effects of Abemaciclib which I am due top start in January. They all seem as bad as chemo? Anyone got any experience of this drug? I’m gutted to also hear that it may cause hair loss = very upset at I managed to keep 50% of my hair using cold cap 
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Hi Denido
I have been taking Abemaciclib for 9 months along with Letrozole. The only sude effect I had is the odd rushing to the loo which I now know how to avoid by not eating certain foods which trigger it and also not eating within 2 hours of taking the tablet ( but other people on here find other things work for them). My hair grew back after chemo - it is thin but i always had thin hair abd it is no different. The list of possible side effects are scary but there are many of us on here who are very fortunate to be experiencing minimum effects. I still work full time and have normal energy levels etc. Please also know that whilst the max dose is 150mg twice a day which i have been fine on the oncologists can reduce the dosage for those experiencing side effects and the data from the trials shows that it does not impact efficacy.
Best wishes
Bookie
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Hi @Denido
I started Abemaciclib this June. I started with 150 mg, 2x daily. It gave me such bad diarrhea (like 6 times a day); abdominal pain. I was given anti-diarrhea med but this caused me constipation, so I was flopping between diarrhea and constipation. It got so bad that I decided to stop the med. My onc then agreed to reduce the dosage to 100 mg, 2x daily. This agree with me more, so i am still on this med. But beware that you will need blood tests very often as it affects your kidney and liver functions, plus it reduces your WBC so I am immuno compromised. Sigh. My preference is not to take this med but I am at high risk for recurrence, so do I have a choice?
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Morning. Thank you so much for this, it has really cheered me up. You are right that the list of side effects is scary but I know they have to list all possibilities. I am hoping that I fare as well as you have. Good luck on your journey, have a wonderful Christmas and a good 2024 
Hi Siggi
Glad your reduced dose is slightly better for you. I am very apprehensive about the effects but like you am at risk of recurrence so will persevere. You take care, look after yourself and here’s to a better 2024 for us all 
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Hi Bookie,
I was prescribed Letrozole and Abemaciclib, apart from hot flushes and aches and pains I was fine on Letrozole, but the side effects from Abemaciclib were terrible,I wasn’t me anymore ,my hair became very thin ,I lost my appetite , diarrhea then constipation,and absolutely no energy I had the dose lowered twice but decided I wanted quality more than quantity,so I have stopped taking it .I know the cancer has a chance of recurring but I couldn’t live that life.Now my life for however long is great ,if I was younger I might have persevered but at 73 I want to live the best life now . Thinking of you x Sandra
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So sorry to hear this. I hope you have a good Christmas 
Hi Bookie
I hope you gut my reply to yr encouraging response as I’m not sure my replies got mixed up. Thanks for giving me hope
Hi - i think thd replies to your post sum it up. Everyones side effects vary. I have been on Abemaciclib since Feb 23. Like you found out after my chemo and radiotherapy.
Wow did it knock me about at first but oncologist swiftly reduced dosage and im on 50mg x2 a day which is the lowest dose possible. Dont worry if you have to have dose reduced as i was told its the consistency of taking it which is the important thing to know
My main side effect is fatigue, watery eyes, dizziness at times and joint aches and pains which is procable caused by Letrozole, i find my diarrhoea is manageable.
I will be taking for 2 years so look forward to Nov 2024 when i hope i will return to my normal self. I decided i wanted to do everything I could to prevent reoccurance as i am stage 3 and grade 3.
Re your concern about your hair. Mine has grown so thick i have to have it regularly thinned. Its the length of fringe which i feel is slow growing more than hair thinning.
To sum it up , the side effects given are worse case scenario. I have returned to work full-time in a large open plan office but are yet to catch any dreaded lurgies that are going around. You are right, the side effects are similar to chemo but i have found not as severe.
Good luck with your on going treatment and remember it will eventually end !
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Hi Denido
I did - thank you! I was just tied up with work so didnt get back on.
Please dont hesitate to ask any other questions if I can be of any help sharing my experience. In relation to a post someone made earlier on the thread - just to let you know that my bloods have been completely normal throughout the 9 months including kidney and liver. I know its not the same for everyone but dosages can be reduced if this happens.
Best wishes
Bookie
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Thank you again B. Have a lovely Christmas - I may well ask other Qs should they arise.
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Morning Teresa. Thank you very much for positive comments. I think I am
At an all time low as I thought the hard part was over but you give me hope that it might not be so bad. You sound like you are coping so well done to you. I will def think about dose reduction if it gets too much. Thank you so much again - I hope you have a wonderful Christmas and a good 2024
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Hi Denido
I’m on 50 mg Abemaciclib - Verzenios. having worked down through 150mg x 2 per day to 100mg x 2 per day. The worst side e being the need for the loo and short notice. Although in the last months i’ve had 3 bouts of loose stools, i know that taking 2 loperamide then give me 4 days clear only
with the odd, post movement belly ache. I did Cold Cap and only lost 50 % of my Mop, but it wasn’t noticeable. On This drug My hair hasn’t fallen out in fact its grown Curly. It used to be thin but a lot of it and wouldn’t bend even with a perm. So I’m quite happy.
3rd week in the month i get sinus, but am prepared with a Decongestant,
Other Side E are minor, but keeping a daily record has help me be prepared and manage them.
Being at high risk i agree we are better continuing with the product. As for Letrozole, it was supposed to bung you up, but there is now a balance which is manageable. I’d rather take Loperamide rather than Latulose to make you go.
Legally they have to list all the Side E, and we are all individuals, just learn your norm and if it gets too much just ask for a week free.
I’ve also been allowed to restart my own over the counter supplements, Magnesium; MSM Chrondroitin with Glucosamine; Plus D3 at 5000 iu, higher than the Oncologist recommendation.
I try to stay fit, walking so far a mile 4 out of 7 days, but do get very tired late afternoon.
Like i said, make notes and learn your norm and discuss concerns with your Oncologist at the regular chats following your bloods. Plus read entries from those who have been on the drug for longer, I’ve only been in this system since July 2023.
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Hello dear Denido,
Congratulations on getting through the worst - chemo and RT, I can categorically promise you that Abemaciclib is nothing on chemo. If you can get through chemo you can get through anything. You are brilliant to have made it through. So firstly do not be scared of what you haven’t experienced yet, because you don’t know until you try.
Like you I was scared of Abemaciclib - have been on it 5 months, on 100mg, and honestly, apart from a bit more active bowel habits, I am absolutely fine. My hair is thicker than ever - a giant mop - and the fatigue is very manageable. I am also on Tamoxifen and the chemo put me in early menopause - so that’s a bit tiring. But honestly It may not be bad for you at all.
I take a lot of supplements to help and eat well. As many of the lovely people have said on this thread, you can find the right dose for you. But knowing what you have got through I believe you will be just fine.
Best wishes, Alex
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Hi denido again,
It hasn’t affected my liver or kidney function at all so far and even though it can affect the white blood count it isn’t like chemo. For the most part it may drop a little but people don’t tend to present with the same kind of immunocompromise that chemo gives. The monitoring is a good thing, it gives a bit of reassurance - and if they find it is messing with your liver/kidney/ wbc in any way they will just give you a little break, until it normalises. So don’t panic about this side effect.
I am living normally on this drug have got my life back, and do not consider myself immunocompromised - and If I am slightly it is nothing like chemo.
So take heart!
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Hi Alex, what a wonderfully warm response you have given me. Together with many others on here, it has given me great hope that it might not be as bad, I just seem to catastrophise all the time at the moment as this is the second time I have had breast cancer – which they found out was genetic Fatigue I can cope with and also a dodgy tummy as long as the loperamide will help. I suspect I may have to reduce my dose as others have said, but I am hoping that All will not be as bad as I originally thought. Everyone here is so kind and encouraging – I don’t think I could’ve got through my second cancer diagnosis without the help of this forum, thank you so much again Alex, you are a wonderful person, good luck with your journey too. I wish you every happiness and good health for 2024 and looking forward. Have a good Christmas and hopefully a fun New Year. Lots of love to you, and everyone else on here, who has been so supportive XXXX
Hello Meinhelf, thank you again for your lovely and encouraging response. I am so blown away by the support on here from lovely people such as you. I will take each day as it comes and hopefully I will be able to cope with any side effects like you and many on here are doing. Thank you again - sending you lots of positive love and best wishes for Christmas and always, take care and be happy xxxxxx
Hi Moonsox, apologies if I have already replied - I can’t seem to find all the responses In have made so I wanted to ensure that I thank you for your encouraging and supportive response 
I will take all your suggestions onboard as they seem very sound. I am glad that you are managing well. I just have a phobia about getting an upset tummy when out but to be honest, I already deal with this as I have IBS so hopefully it won’t be much worse. Thank you again, we are supportive bunch of women (and men) so I wish you all love and best wishes on your journey going forward, take care you yourself and be happy xxxxxx
Hi Denido, your welcome, one tip i did pick up from another was to always ensure you have 1. a small bag which contains 1/2 loo rool, wet wipes and those big Always pads to replace or use following any toilet emergency.
2. Obtain from a Mobility shop the Radar Key, which gives you access to disabled toilets when public toilets are still closed. Many of the new style disabled toilets have washing facilities them, a great help.
3. Contact your local Macmillan group and obtain the key-ring and card pass which gives you the polite way of accessing toilets in shops etc. on the back it states " Due to my cancer treatment, I need urgent access to a toilet. Please can you help." Both my partner[also going through cancer] and myself have benefitted from this many times.
4. Never be afraid to ask, and the further through your journey you get, you find the strength to ask and explain that you are going through cancer treatment, There are many Angels out there. Love and Light.
Ps Perhaps through your macmillan seek out the Free therapy that may be available. usually entitles you to 8 free sessions, Reiki, Reflexology and other even counselling. Seek and ye shall find. pps plus free car park pass at soe hospitals again through macmillan. Lol M xxxxxxx
Moonsox, you are a mind of information and help, thanks for all of this. I will def be following all your tips above as I can see that they will help. Consider yourself one of my angels and I send you my love and light back sweet person. 
