Hi everyone, this is the first time I’ve posted but I have been reading some of the lovely and supportive posts over the last year which have been a great comfort to me, so thank you!
I’m looking for some advice and top tips please for managing abemaciclib side effects if anyone would like to share?
I’ve had chemo, two operations and radio. I started tamoxifen, zoladex injections, adcal about two months ago and abemaciclib two days ago! Apart from a bit of nausea and tiredness I’m doing okay so just wondering how soon the side effects will kick in and how to manage them?
Thanks very much
Hi Chelsea, my diarrhoea kicked in day 4 but it’s day 7 for many. I found the first month the diarrhoea was at its worst. It settled after 3 months but I still have about 2 episodes of diarrhoea a week, there is no pattern to when these episodes will occur. For me loperamide is very effective and at times I take it for peace of mind if I am travelling or going on a long walk.
The only foods that make my diarrhoea worse are highly greasy foods but we are all different and you may find other food’s effect your gut.
Advice wear a panty liner just in case and just take it one day at a time, 2 years seems a long time but I’m already on cycle 9 and a third of the way through.
Hi Shade thanks very much for your reply, that’s really helpful. Day four will be tomorrow! I didn’t think about taking loperamide as a preventative measure if travelling etc. that’s a really good tip. Good to know it settled down after a few months. Thanks so much xx
Hi Chelsea
I am coming to the end of my treatment - I started Abemaciclib on 9th of June 2022. There is a thread on here that I started at the beginning of my treatment - Abemaciclib along Letrozole. Check it.
Good luck with your treatment. Xx
This is the chat I was talking about
Chelsea, I was on Abemaciclib for 41/2 years, with very little side affects.
I had the very occasional diarrhoea and nausea. To be perfectly honest with you, I did very well on it and any affects from the medication was easily managed.
I would have sickness tablets supplied by oncology pharmacist, which if I took immediately I felt sick, it would help and the sickness passed. The worse thing you can do, is wait to see if it got worse as you will find the tablets then did not work. You need to take them immediately you feel a little bit nauseous.
I had very dry skin on hands and feet, so plenty of cream with high urea content helped with that.
I was very lucky to have minimum side affects, never reduced the dose and was on maximum dose throughout.
It stopped working for me after my 51 cycle. I have since been placed on further treatment, but my time on Abemaciclib passed smoothly, so everyone is different, so fingers crossed you will be lucky and not suffer with the known side affects and sail through your time on it as easily as I did. Good luck.
Hi, oh okay thank you, I’ll take a look
Hi Alibaba, many thanks for your reply. That’s great to hear you had very little side effects, fingers crossed I’ll be the same! Thanks for your advice about nausea too, I’ll do that. I’m sorry to hear you need further treatment though. Sending you my best wishes xx
Hi Chelsea I am just about to start the abermiclib after being on the Ribociclib which didn’t agree with me just interested to see how you got on with the drug and if you suffered any side effects.
If anyone can give any further advise it would be helpful
I am on the small dose to start with, is anyone else on that dose ?
Hi there, I’m on abemaciclib and letrozole. I do really well! I no longer collect the supplementary drugs they give you to help with the side effects. Occasional loose stools but nothing that needs the loperamide. My nurse says I am “so straightforward”. Yay. I share because it has a bad reputation but some people are fine on it. My friend is on it and she got a dose reduction because she found it hard, so that is always an option for you.
The results of abemaciclib are really promising, my oncologist says it has revolutionised breast cancer treatment and because of this, for MY specific breast cancer and stats etc, he considers me “one and done” - that it won’t come back. I could have cried when he said that. It’s not nice reading this drug is for people at high risk of recurrence. My oncologist says high risk just means you have to work harder, which is what they are doing with my treatment.
Good luck! x
Hi that is really comforting to hear, I have been on it now for just over a week so far so good the only issue I am having is high blood pressure with the Letrozole which is manageable and I have just started with a jittery mouth anyone experienced anything like that ? Or is it just me
@clastee that’s so reassuring. Thank you. As most people I’ve read who are on this really suffer from diarrhea. I’m not on this yet but my oncologist has put this on my plan once I finish chemo and radiotherapy.
Hi, sorry for the delay in replying! I’m doing okay thanks and will be starting my fifth cycle tomorrow and so far not too bad. I get tired so have to not over do it and a few mouth ulcers but that’s about it. So hoping it continues! Hope you’re getting on okay xx