It’s looking like my oncologist will take me off Fulvestrant and Ribociclib for metastatic bc because it takes an extra two weeks each cycle for my neutrophils to rise above 1.00 even on the lowest dose this last time and they say that can’t continue ( not cost effective ?)
. I’ve only had four cycles but CT shows it does seem to be holding things at bay.
The offer to me is to replace Ribociclib with Abemaciclib .
I have had some diarrhoea issues even on the low dose of Ribo, although I have managed it, but I know that the incidence of diarrhoea and more severe diarrhoea is very high with abemaciclib . I’m 75 and my gut has always been my ‘Achilles heel ‘ so to speak . The thought of managing bad diarrhoea fills me with horror. If I don’t take it, it looks like my only option is to stop all treatment which of course is likely to reduce my lifespan but might allow me better quality in the short term and that alone can be my decision.
Does anyone have any good or bad experiences on Abemaciclib or advice ? If I could persuade my oncologist to start on the lowest dose, given that I’m on the lowest dose of Ribo , and that is considered cost-effective I might take it but I don’t think she will .
I’m not going to be allowed fulvestrant on its own as it’s not allowed funding only with the other drug .
I am getting disillusioned that a lot of the decisions are made more on cost than efficacy ! I’m in UK .
I too are on Abemaciclib 50mg (lowest dose) twice a day but seldom have diarrhoea issues. Any occurrences have been few and far between and managable. My issues were fatique so went from 150mg twice a day, to 100 mg twice a day, to 50mg twice a day. I still get fatigue but not as bad as the higher doses. I feel its a small price to pay
Id say, give it a try and you’ll soon know as side effects appear quite quickly and they’re usually quick to change the dose, with a small break, if it doesnt suit! 
good luck xx
Thank you - one issue is I think they would expect me to start Wednesday and that could definitely mess Christmas big time with family visiting so if they won’t postpone it till after Christmas then I might just end up saying no.
How do you been on any other similar medication before or was this your first targeted therapy? I was tired on ribociclib but to a certain extent got used to it .
Hi Gillmary
I would highly recommend Abemaciclib as the research results are so promising. I have been on max dose of 150mg twice a day for 9 months and whilst I sometimes had to rush to the loo I quickly discovered what foods to limit to prevent that. I have no other side effects at all and manage to work full time. My bloods have also been fine throughout. I also know that if the oncologists need to reduce dosage to help with side effects this does not impact efficacy. I feel very fortunate to be prescribed this drug as I am high risk for recurrence and I want to do everything I can to potentially reduce the risk.
Wishing you the very best with making your decision as these choices are so individual. I just wanted to share my experience as it has been so positive.
Bookie
Thankyou for sharing that
Hi Gillmary, I hope you are feeling ok.
I was prescribed abemaciclib in combination with Letrozole and I started it at the end of May.
First two weeks were fine, although I had Letrozole side effects to contend with but after two weeks the diarrhoea kicked in and it was a challenge for about 5/6 months. I doggedly stayed on the 150mg and I am now through the worse of it, I hope. I found sliced bread was a trigger for me and spicy foods.
Still occasional diarrhoea, maybe once or twice a week but it’s only once not continued and I don’t tend to take Loperimide because I don’t want constipation.
The other thing I suffered/suffer from is stomach cramps but I think I need to take the oncologists advice and just max my paracetamol every day to keep things at bay.
I hope you get on ok with it.
Thankyou . That’s useful to know . The decision hasn’t been made yet, because I’m still awaiting a blood result to see whether I continue the ribociclib. They are ringing me on Tuesday .
At 75 and with some long term gut issues anyway, , battering of my gut by pelvic radiotherapy last June I have been considering not putting myself through yet more for the sake of some more months of life . Ribociclib although it does have some effect every cycle on my gut is manageable for me, but I wouldn’t want it a lot worse .
My metastatic breast cancer of course is terminal anyway, though it has remained stable in the few months since diagnosis so the treatment has done something although neutropenia has made constant interruptions .
As always with these terminal situations, it is a question of do I want to live well for a short time or struggle on and put up with stuff in the hopes of going on longer - a decision so personal to everyone .
Hi, not even sure how or what I want to say. I was reading your post about taking Letrozole and abemaciclib, my mom had breast cancer 27 yrs ago and May of 23 it came back stage 4, she has been on Letrozole for almost a year now, she is 75, her dr now wants her to also take Abemaciclib. She is very nervous about it, worried about side effects, she doesnt want to spend what time she has left, as she says, being sick. Do you think its worth it for the added time, I know its a personal decision, but as her kids we are trying to hang on as long as possible, but dont want her to be miserable either.
Hi Paula, I’m so so sorry to hear about your mum. I hope she is managing ok with everything that is being thrown at her.
As you say it is your mums choice whether to take the Abemaciclib and all I can do is offer my view of it.
I have 4 weeks left of my 2 year stint and truthfully there have been times when it has been hard but also times when I’ve managed to forget about it. The main problem I had was diarrhoea and stomach cramps and at times those cramps came on while I was out and about. They could take my breathe away and I had to sit down and ride them out but they did always pass. I never had a situation where I had diarrhoea away from home. Maybe I was lucky with that but also I did after time learn to work with the abemaciclib by using Loperamide as a preventative measure to counteract it
Now I’m at the end of the course, looking back I would definitely take it again. It wasn’t easy but I also didn’t find it intolerable. I managed to stay on the max dose because, for me and in my head, I needed to do that.
So I would say that the fear and worry of it can sometimes be worse, it can be managed effectively and there is the option to reduce dose if it’s too much. Maybe your mum could start it and see how she gets on with it?
I hope that has helped and best of wishes to your mum and her family and loved ones.
@paulab
Hi, I’m on Let and Abem (been on Abem for one year). It hasn’t been too bad, diarrhoea was manageable (for the first 4 months, now don’t have any). And your mum could lower the dose if needed (doctors say that the lower doses work just as well). So my advice would be to give it a try. Tell your mum to wear a pad cos the worst thing about the diarrhoea is the lack of warning-when u need to go, u need to go!! 