I have had a grade 2 HR+ HER2- cancer removed in Aug ‘25 with clear lymph nodes. My oncologist did a Ki67 test that came back at 25% indicating Ribociclib beneficial and should be starting it in December after radio therapy (on the NHS). It only got approved a couple months ago for lymph node clear cases apparently. Terrified of the side effects. 
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Hi, I was really scared of the side effects too and initially decided not to take it when I finished radiotherapy in April as it wasnt then NICE approved for my diagnosis (HR+ Her2-, 3 postive nodes). It was then approved in July at which point I looked again at the side effects and my oncologist said I could try it and see how it went (he’d previously quite annoyingly assumed I would start it without much discussion as he recommended it and I had Bupa cover…)
As I understand it (unless your oncologist advises different) you have 12 months from the end of radiotherapy to start ribociclib so you should be able to take your time to decide and see how you feel after radiotherapy (my 3 weeks of radiotherapy made me really tired) or even in a few months time.
My main concern was quite specific re drop in blood count as I have close family history of incurable blood disorders so I saw a haematologist and got comfortable with taking ribociclib given my family history. I also asked my oncologist alot of Qs and read up on it myself.
I’m 2 cycles in, blood tests for cycle 3 tomorrow and so far it’s been alright. Had a v itchy hand for 10 days in cycle 1 (so took standard antihistamines and it went away) and had to get antibiotics for an infection mid cycle 2 which was more a faff than feeling ill as I couldnt just go to a pharmacy like normal but had to get blood tests etc before getting them from the hospital. Side effects seem to vary individually tho.
Hasnt stopped me exercising and I also went to Italy for a long weekend last week which was completely fine/normal too.
Good luck with making your decision, you may well be able to take your time in making it tho and think about it in the New Year instead of having to decide now.
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Hi, thanks for the details and glad to hear it’s working for you. What’s the benefit of taking Ribociclib? Were you given a % benefit? I’m halfway through RT and have seen this drug mentioned in my notes for future discussion…would like some advice on questions to ask my oncologist in my next meeting. Thank you 
My oncologist said there was a 3% better rate of it not coming back with ribociclib. Not a lot really. We asked him what he would do. He said, if it was a family member, he’d tell them to take it.
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I haven’t had any significant side effects, except for one day of tummy pain which I think in retrospect was unrelated. I’ve just finished cycle three. I’ve been abroad twice since being on it, with no issues.
There has been some new data announced at an oncology conference in the last few days-I follow an American Oncologist on Instagram who has done a good summary.
The figures can be a bit confusing. The latest data of almost five years follow up on the Natalee trial (using ribo in primary breast cancer) showed a roughly 28% reduction in risk of recurrence. So the 3% actually means reducing your risk of recurrence say from 10% down to 7%. (ie 28% of 10% is about 3).
It seems that these drugs will be game changers in early breast cancer. I was so glad to have the opportunity to take it. For me it’s about knowing I’ve done everything now to reduce my risk of distant metastasis and ultimately death from breast cancer. I don’t want to have any regrets at any point.
We are all individuals though, so take your time and talk to your team so you can make the right decision for you.
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Thanks @imb. That’s really informative. I’ve nearly finished my first cycle. I’ve felt fine on it apart from getting a UTI. I was a bit concerned as I had one during chemo which gave me sepsis but I think I was mistaking UTI symptoms for the beginnings of sepsis. Anyway, two lots of IV antibiotics at the Same Day Emergency Care unit with co-amoxyclav to take home, and I’m feeling fine.
I had also had a weekend on a choir tour, which was full on, and managed to keep up with everything.
That is the same as my oncologist said including that he’d recommend a family member to take it in my circumstances. He also said that the “sister” drug abemaciclib data is showing a c.50% reduction in risk of secondary cancer developing and they expect similar results with ribociclib altho they didnt have the same data yet. That helped persuade me to try ribociclib too.
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Thanks for sharing this link, really encouraging data.
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Hi
I “fought” to take Ribociclib rather than Abemaciclib because the side effects were meant to be less extreme and therefore a better QOL. When I started Ribociclib, it wasn’t approved for use under the NHS but I was able to get via private health insurance (through work). I read the research available.
I can’t say I have noticed any side effects - they could easily be caused by Letrozole eg insomnia and nausea (which I think is caused by my prescribed calcium tablets - usually happens after I take one).
I fought against AC chemo after paclitaxil - due to fear of side effects and long term effects - I had a good response to paclitaxil.
Now looking back I am glad I had AC even though foul. I’ve learnt so much about breast cancer as I’ve gone through the whole process. Everything I have gone through has been to reduce my risk of recurrence with great advice from my oncologist - I rather not take more drugs, but even 3% gives me more hope that I have done all I can.
However you might also get that 3% from exercising every day (and reducing alcohol intake and eating a healthy diet).
It’s a very personal decision. I wish I didn’t have to take it for three years but also worry about coming off as I feel it is “zapping” any cancer cells that might become active.
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I wish I didnt have to take it for 3 years too but am grateful not to be on Abemaciclib (altho I’m not eligible) as the side effects sound alot more intense for hopefully similar results. After finishing main treatment I also became more anxious about recurrence risk than the potential side effects of ribociclib which made me more willing to try it (and do lots more exercise, drink less alcohol etc). Only 37 cycles to go…
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I need to work out how many cycles I have left 
I think 27.
And Zometa - we take for two years so is that 4,5 or 6 (someone said 6 to me the other day)
Letrozole is ten years so not even worth thinking about - although I maybe able to reduce to 5 years when new data surfaces. Hopefully by then they may also be able to tell who it works for/ if has stopped working.
It would be nice to enjoy some drug free years before I head off permanently.
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Hi all. So I managed to get my neutrophil levels evened out (dark chocolate and exercise) so I could stay on the 400mg dose, but now my oncologist has said my liver function tests were at 7 (so slightly raised as they should be under 5. So he said to stop this cycle 4 days early and hope theyve gone back to normal by the time of my next test on 11th Nov. Does anyone have any suggestions for getting this blood work metric back on track. Im really worried about having to drop to a 200mg dose.
I’m sorry I have no ideas. Re neutrophils I also read that study about dark chocolate and used to eat loads before they took my blood
However check the Natalee or Monarch studies for the impact of reducing to a lower dose - they seem to say it’s OK and doesn’t affect outcomes.
Have you tried chatGPT and asked it to check and cite all known studies and resources when responding and also not to hallucinate.
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@redruth @jbb
Don’t worry about dropping to 200mg. I have been on ribociclib since last December and had issues with ALT. I had to drop to 200 and like you was worried. The clinical trial data showed it was effective, but still concerned so asked my oncologist. Essentially, you are either a fast or slow metaboliser and if you are a slow metaboliser, it takes longer to metabolise (process) and excrete (get rid) of the drug. The way I think of it is that as slow metaboliser, effectively getting a higher dose (as it takes longer to get rid of it), hence why effects on liver, blood etc. So, 200 for me, is the same effective dose as 400 for fast metaboliser.
Liver may take some time to settle, even after dropping to 200, it took a bit of time tfor me and only in the last couple of cycles has it been 'normal/close to normal. For me, I avoided alcohol, drank a lot of water/squash and try to get as much exercise. I know am able to have 1 glass of wine etc the first weekend of treatment 
Good luck.
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How many cycles did it take to drop to 200?
My liver enzymes came back over what is allowed for cycle 2 so having another blood test this morning to see if they have settled (which would mean a 2 week break if I start today)
If they still aren’t good I have to wait another week
It’s quite a frustrating drug for the body to get used to
That’s good to know thank you .
@idcand49 Sorry for confusion, by 200, I meant 200mg dose not ALT. I moved to 200mg dose in late April but took till about early August for my liver to ‘settle’.
It is annoying that takes time and the treatment breaks are frustrating, but fortunately I didn’t really have any physical symptoms other than being a little tired.
Hope things settle soon
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Ah got it
I was cleared for cycle 2 so started it yesterday
I’m hoping the cycle 1 wobbles don’t reappear 
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I’ve also had cycle 1 wobbles.
I caught a UTI just into my 3rd week and it’s been hard to shift. Went away after antibiotics but my day 22 bloods showed low neutrophils and the UTI came back just before I was due to pick up my next cycle of Ribociclib. My neutrophils had recovered enough but they decided to delay the start for a couple of days.
I’m really hoping it settles down 
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Morning all. Good news, the Scottish Medicine Consortium has just approved ribociclib for Early Breast Cancer
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