Hello all, it’s me again,
Feeling a bit …. Flat I should say . Have been on and off Ribociclib & as my liver functions were showing too much strain on the liver, Have been put on Abimacyclib now.
Have heard this can have some brutal side effects but hoping it will agree with my body and will stick. Has anyone had any experience of this drug and its side effects?
3 monthly scans showed no change to the first set (so that’s a positive) but showed some specs in the liver - which the breast cancer nurse said was benign. How on earth can they tell through a scan I don’t know , but have since been worried, is this progressing faster than I anticipated?
Feeling quite unsettled again . The uncertainty, the unknown.
Apologies on the downer .
Hi , the same Thing happened to me with ribociclib , I started abemaciclib 2024 Nov having stopped the ribociclib august 2024 due to high ALT levels despite dose reduction having started it March 2024 when diagnosed .
My dose is the middle dose, ALT levels been within range and my neutrophils better on this drug too , I do get nausea and bowels can be erratic at times but my disease is stable . I feel better generally on abemaciclib .
Hope this reassures you going forward x
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Oh thank you , louise6, definitely reassuring.
let’s hope abemaciclib suits me the same .
Good to hear that the condition is stable with you . That’s the main thing !
Thanks again 
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I had problems with ALT levels on Ribociclib so I was switched to Abemaciclib. My ALT levels were much improved and neutrophils were fairly stable on the whole. Abemaciclib was nowhere near as bad as I thought it would be once I got used to it
I didn’t have problems with nausea very often but the diarrhoea was a problem especially at first.I once had to leap out of my car at the side of the road - not my finest hour! I stopped eating chilli, curry, fibre - nuts, seeds, lentils, oats, beans -my favourites -until I could control it.
My nurse told me to take 2 tablets straight away which can stop it in about an hour and you can take up to 6 per day. It’s all a balancing act if you take too many you get horribly constipated which is grim. I found that I could take 2 tablets at around six am then meds 8 am Sometimes I’d take another one or two around 12 ish and this would stop any problems and I would usually be ok for that day and the next and then start the cycle again. Diet definitely helps. If I had a special occasion or journey I’d take 2 the night before and 1or 2 around 9 am if I was still having cramps or the runs.
Try it out and see what works for you; your gp should prescribe them for you and also Boots sell own brand loperamide that melt in the mouth so you can take them without water on the go.
Tena lady , Wipes , nappy sacks , barrier cream in your bag help at first ….
It did become manageable for me as time went on, I never went anywhere without loperamide in my handbag but I didn’t need it as much as I learnt how to manage me.
Good luck!
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Thanks luludaisy42,
Shall definitely bear in mind the tips . The wipes /nappy sacs etc are all smart measures. I must get organised . Day 14 today and no sign of diarrhoea, yet ! Worried it might hit me when I least expect it . However , I have a mouth full of ulcers . Pretty bad actually (or at least I think it is ) and no sign of relief . Been prescribed two sets of mouth wash and gel . Both give me some relief from the sting but no sign of improvement with the ulcers itself . Wonder if anyone’s had this to deal with and how do they cope .
Glad your symptoms did ease and you’ve got used to Abemaciclib . I just need it to stick and the body able to get used to it .
Good luck with the treatment and thanks again for sharing your experience with the meds .
Hiya, I don’t know if this would help your mouth ulcers, but I use a TePe Pure Toothpaste for very sensitive and dry mouths. It is unflavoured ( you can get mint flavour but that can sting) and doesn’t foam as I think something called SLS is an irritant when your mouth is really sore. You can get it on Amazon it’s about £4.99. It’s really odd at first to use but I find it helps.
Hang on in there !
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Thanks , will give it a go !