Personally I wouldn’t expect to feel like that. I would be reporting my side effects to oncology which I did because I felt exactly like you. I couldn’t leave the house for rushing to the loo, the cramps were very painful. I lost 6 kilos in 4 weeks food tasted disgusting, tea and all drinks were foul. My mouth broke out in sores, my hands were sore and I was so tired that I managed to shower and that was me exhausted for the day. I told oncology and that’s when I was given 4 weeks break and was reduced from 159mg straight down to 50mg. I’m finally living again and even going on holidays. They have no intention of increasing Amebaciclib for me and told me that data shows that it’s still effective. Do I believe that? Well who am I to argue, all I know is that I feel so much better. I still have the odd stomach cramps and diarrhoea but it’s only occasional and I have more time to find a loo. why not speak to your team and tell them how you feel. They may be able to suggest something to help. I’m sorry you are feeling like this and I know how it feels. It’s tough isn’t it. Take care x
I hope you start to improve. To be honest I’ve forgotten what normal was. Since I was diagnosed Jan 2023 it’s just been psychologically tough, then you have the surgeries, chemo and side effects of the medication but I just try and carry on as normal but some days are harder than others but today has been a good day and I appreciate having those good days.
Before I started this medication I always had my hair done every six weeks with two colours, one a bleach and the other a lowlight which is a dye. That hasn’t changed, I still have it done every six weeks. My hair is thinning (not badly) but I don’t put that down to hair colouring since thinning is a side effect of the drug. I have virtually no eyebrows and that’s not down to the hair dye.
I'm on Ribociclib & my bcn checked ot out for me & said as long as I had a patch test ( even though always had it dyed) I could. I didn't have any problems x
I've been on these for just a year now. Started on 150mg, reduced to 100mg after about 8 months but pretty much settled now. Sometimes have 'meh' feeling days, but try to get on with things. I've found there's some foods I can't tolerate anymore, but used to being on them now. My eyes continually water from the moment I open them.
Tiredness sometimes too, but I work full time, so not sure how much is related to that.
Just remembered (how can I forget?!) hair is very thin on top, which is really upsetting. I bought a hair topper though, human hair, very expensive, but worth feeling a bit more normal again.
Hi, sorry to hear you’re experiencing hair loss. Mine has grown to about 1cm. Could I ask how long after starting did you notice your hair thinning, does it just grown finer or does it fall ou? I systred on this medication on Wednesday. goof luck with your treatment
I have been about a year, maybe less after starting Abemaciclib. No side effects . Obviously do do a patch test. Like others hair is a tad thinner but side effect of drug. Coming to end of 3 years.
I’ve been on this for about 14 months and it’s been a rollercoaster to say the least . I am on 100 mg x2 and when the dose was reduced from 150 , I noticed an improvement . However the side effects have ramped back up again over the last few months , hair thinning , fatigue ( really bad !) , tummy issues . I don’t really want to go to the lowest dose but I might have to
It’s frustrating when I hear others having barely any side effects ( although of course that’s great !) because I think why can’t I handle this drug !? I don’t know why the side effects have gone back up again
