Ribociclib …Help!

Going through breast cancer treatment Targeted therapies
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Continuing the discussion from KISQALI (Ribociclib) Primary Breast Cancer - just started (Dec24):

Hello, hope this is ok as it’s the first time I’ve posted and desperately need some help understanding as I don’t know what to do!!! My story is…

I was diagnosed with stage 3 breast cancer ER+ HER2- found four tumours. It was successfully removed late December 2024, had surgery (mastectomy), Onco type score was 26, so had chemotherapy and radiotherapy which finished in August 2025, I the switched from Tamoxifen to Letrazole in December 2025 along side Zoladex but just had a further operation to remove my ovaries and tubes (in recovery now :smiling_face:). Im now waiting for the zoledronic acid infusions and should start this around March time.

I have been offered Ribociclib which was discussed by my last oncologist in September which was a bit of a shock as it was the first time she mentioned it and it’s not something I expected. Didn’t really know anything about it.

I didn’t have a great time through chemo especially when I was on Docetaxol and had quite a few hospital admissions with high temperates, infections / chest infections / reaction’s however they never actually found the source but treated me with antibiotics (I had a lot of antibiotics as it happened on each cycle). I think it may have been the injections that I reacted to but no one was sure. Nausea was also a massive issue for the first 3 cycles and UTIs began when I started Zoladex but that’s calmed down now .

My oncologist was very matter of fact about ribociclib especially with my background so didn’t sound too keen, said I would be immunocompromised for 3 years and can affect my quality of life.

I’ve got very high anxiety about picking up infections, especially when on chemo, I wouldn’t leave the house until I knew my bloods were ok, I wouldn’t be around people that were ill or had colds including going out to crowded places. I was house bound for most of it. It absolutely terrifies me with all the side effects,

I have just started feeling like I’m getting my life back after all the treatment, I haven’t worked for 15 months and I couldn’t work through chemo as I was too unwell. I also have a job that involves driving all over the country to attend meetings.

my oncologist left so have been waiting for a new one who I saw this week and he was quite positive about it, said you can live a normal life but is living a normal life reality??

Any help or experiences would be appreciated. I have read previous comments and although it’s looks positive there are still aspects that terrifies me.

They’ve told me to think about it and given me 6 weeks to make a final decision but my head is in a whirl!

Thank you for listening …sorry for the long post :grimacing:

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Hey, it’s a big decision but I can tell you my experience so far, I had a similar diagnosis to you but a single tumour. I am over half way through three years on ribociclib (about cycle 23). I was very keen to have this drug as the studies have now shown a clear benefit. I found IV chemo tough (EC and paclitaxel) and was very poorly at some points. I have found ribociclib completely different to IV chemo, and much better in terms of side effects. I am able to work full time (scientist, lab and office work as well as commuting to work) although I am working 2 days from home each week. Speak to work/occupational health about reasonable adjustments in your role. I was very worried about being immunocompromised, sometimes my neutrophils sit between 0.9-1.2, but I have not picked up anymore infections than usual and they haven’t been any worse. I do have side effects (some nausea and some tiredness), I sometimes (once or twice a month) take anti sickness for the nausea which makes it go away, but there isn’t much they can prescribe for tiredness! I exercise and eat well to help combat that and Id say I live a normal life, no one who meets me would guess what I’ve been through! I would say that you can always just try the medication, take it cycle by cycle (even day by day, if needed) and see how you get on. If the side effects are bad for you, you can chat to your oncologist and potentially reduce the dose (to 200 mg) or stop. Stay positive, stay well and enjoy life X

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Thank you so much for sharing that’s really helpful :blush: I would be so paranoid about temperature checking and picking anything up as well as having low neutrophils, I think for me it’s more mentally which then effects my quality of life. Do you still do everything as normal or are you still careful with what you do and where you go? Do you always have low neutrophils or can this vary? Does it happen at certain points of the cycle?

I have a holiday booked in May and my oncologist said I wouldn’t be fit to fly. I used to look for hospitals where I was staying if I was going on holiday (in this country) would I still need to do the same?

So many questions still, maybe I am overthinking it but I’m also worried that this could cause other issues than just the side effects.

Thank you again for replying x

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I’d say I do things as normal, I would move away from someone coughing or sneezing (but I’m sure I’d do that if I wasnt taking ribociclib!), if someone tells me they have a cold, I’d avoid seeing them until they are better.

I’m surprised your oncologist said you wouldn’t be fit to fly in May, I’ve never heard of that with ribociclib, unless you’ve just recently had surgery?

I think the neutrophils do fluctuate from week to week, and recover during the one week break.

I don’t live in fear and feel I live pretty normally. Perhaps chat so some of the nurses at the hospital and explain that you are feeling nervous, see if they can give you their thoughts as they will have seen many womens experience on this drug.

I really hope you come to a decision you are happy with x

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I’m so glad to find your post- not glad that youre going through this though.

I’m 12 days into taking ribociclib. I was diagnosed and lumpectomy in Jan 25, then high oncotype so TC chemo, then rads. I was merrily going along with Zoladex and tamoxifen when oncology got in touch for me to start ribociclib and the benefits made me go ahead. So now I’m on Zoladex and an AI (letrozole) instead of tamox. They did blood work and ECG before I started and delayed as saw odd liver function. Took bloods again and decided I was OK. Then I got blepharitis so bad that I’m on 3 months of antibiotics. Oncologist said to go ahead with Ribo but at low dose. I’ve had a cold, chesty cough, not slept much for last 10 days. I feel physically as awful as I did 1 week after chemo and I’m miserable.

It might be poor luck so I will keep going - Oncologist meeting this Monday coming so today they took more bloods and another ECG. I’m desperate to find out I have low white blood cells and have them ask me to stop taking the ribo. I don’t want to choose not to and not throw everything at my high recurrence risk BUT I feel terrible and want my life back. I feel like I still have cancer having to visit hospital so often. I’m scared to make the decision that it’s not for me.

For context I am 43 and work in a school. I don’t know if that means being immune suppressed is too risky. The oncologist said I wouldnt be anymore at risk of catching infections than a normal person but it sounds like your oncologist said the opposite. I can’t escape germs and over 500 people every day. I also have a 10 year old and so wanted to bounce back and enjoy life and thought I was getting there but this has really impacted me.

Sorry, that’s a really emotional and negative rant. To reassure you - it looks like so many people DON’T have issues and maybe things will get better for me. Xx

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Hi fancyhooves

Sorry that you are finding ribociclib hard. You’re not being negative.It is very hard. I felt exactly the same as you when I first started, to the point that I emailed the breast cancer nurse and said I didn’t think I could continue on it. I too still felt like I had cancer with all the trips to hospital.

I had a terrible cold right at the beginning too and they told me to get properly better before starting.

I have continued with it, starting cycle 5 today. It has got considerably easier since cycle 2 and I now no longer feel so unwell. I think my body has got used to it.

Also, where I am, they begin to monitor you less if you tolerate the drug well and for the first time I now have 2 months supply and don’t go back for 8 weeks which seems more manageable .

I don’t really know anything about the infection risk and that is probably what worries me the most about this drug to be honest. I do work but mostly from home and my kids are grown up so I definitely don’t get exposed to as much as you do but I have been ok so far.

It is a difficult decision though, but I thought I’d let you know that you might not feel as bad as you do now if you decide to continue.

I wish that none of us were having to go through this though!

Continue to rant away … I do!

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Thank you! So kind of you to respond so fast and also to let me know there is hope! Not having to fanny about with hospital visits would help so much and it sounds like you suffered similarly at the start so that’s positive (that it stopped not that you suffered!).

My boss is very good with giving me time off but I thought I’d be done and get to celebrate ‘normal’ so each time I get one of those hospital letters I’m a grumpy moo about it lol! Is it just me or do you know the font and type of stationery the hospital use by this point so you immediately know you’ve been summoned when something lands on the doormat?!?! :rofl:

This medical menopause, background recurrence thinking is kicking my butt at the moment. Hopefully if it stops raining I’ll stop grumbling.

Thank you again x

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:joy: Oh yes! The envelope, franking and everything. A summons from the hospital is about the only post I get apart from junk mail!

Rant mode switched on … I think part of the difficulty for me was the shock and annoyance after bring told I would “just” be having anastrozole that suddenly this drug was being offered which seemed like chemo in terms of blood tests and infection risk but unlike the 4 months of chemo was going to go on for 3 years :weary_face:

Hopefully it is doing something good…

One day at a time.

Happy weekend!

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I am going through chemo currently and this is an option for me at the end of it. Im am already at 90% survival over 10 years this only adds 3 to 4% im trying not to think too far ahead as its scaring me and suffering really badly. I havent heard anyone who lives a normal life on cdk4/6. I think i will be giving it a miss :see_no_evil_monkey:

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Hi fancyhooves

So sorry to hear your story, it sounds awful and I remember that feeling well when I was ill on chemo …that’s the bit I really don’t want either, my son is 9 and really want to beable to look after him and enjoy holidays etc. this is what I am scared of too but as you say the cycles may get better, my view at the moment is see what happens and if it’s really is that bad then I will make a further decision then but at least we have tried and I think that’s all you can do. I’m like you, I would rather they take it off me and say you can’t have this anymore than make the decision myself like I said at least you know you’ve done everything you can! I cry to myself about this and find it so hard but had to speak to people and do a lot of research.

I hope it does get easier for you, I would Like to think on the next cycle it will, however I wasn’t sure if it is accumulative like chemo but from other comments it seems to get easier.

good luck and keep me posted if you don’t mind :blush: x

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Thank you for this, I have just had surgery. I had a oophrectomy to reduce my risk again. The oncologist said it was something to do with the air pressure and having low neutrophils, that’s said they won’t give me a fit to fly but they said people do fly with it on the own choice.

In my mind I’m guessing I won’t get travel insurance and will be too scared to fly if they won’t give me a fit to fly!

Think I’m going to at least try and take one step at a time, I do feel like my life is on hold again and I can’t specially plan but I’m thinking about 3 years of taking it rather than the here and now and switched my view a little …it’s doing a good thing!

Trying to stay positive x

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Hi There,

I haven’t really asked about my personal statistics, I think maybe they should give them to me maybe that’s why it’s been such a hard decision as all I keep looking at are the side effects! Did your oncologist give you the 3-4%? They just tell me the overall statistics and then suggest I should take it because of my age grade and tumours. I tried to work it out and that was the figure I came up with but still not 100% sure!

She didn’t give me this option until after chemo but then it had only just been approved on the NHS. I do think sometimes these drugs cause other issue but it’s such a hard decision.

Hope you are keeping well in chemo, all the best x

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@mj187 thank you for reply. Chemo is hard and im finding it hard to cooe. Do you mind me asking what your cancer was. Mine is grade 1 stage 2 and I had 2 positive lymph nodes.

My oncologist said it added 4 to 5% but im at 90% anyway after chemon, radiation and hormones.

He said it was my decision and was going to take me off chemo as im struggling and put me on that. I cant do 3 years of feeling awful. If my results after chemo and everything else hadnt gone up my 9% thennit would be different. But Im getting muself worked up when im not coping with here and now x

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It’s so hard to keep focused on baby steps day by day - it sometimes just feels like too much and the anger comes. I’m still amazed there isn’t automatically counselling for us from the NHS. I have a friend who has had weeks of counselling for elected baratric surgery as part of the process. Why dont we have that? It shouldn’t be down to charities. Anyway, I’m digressing a bit.

Just to say, and I’m bad at it myself, we have to expect ups and downs and panics and freak outs. And keep talking to each other. No one else will ever really get it xxx

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Yes of course! I’ll be honest that I stopped the tablets at day 12 but only because I have consultant Monday. I’m going to be honest that I was scared my cold was getting worse and my lungs and breathing were impacted. Then go from there on what bloods say. I know I should probably have checked in earlier but it is so hard to get hold of anyone at the hospital and the phone calls go to really angry secretary and I can’t deal with her again for now. Yes - I’m a coward lol.

I’ll update you after Mondays meeting xxx

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Of course…mine was grade 3 and my onco score was 26 with no lymph node involvement. I had four tumours. Originally they just said it would be radiotherapy after my mastectomy so I think they thought I wouldn’t need chemo but then my onco score came back and they didn’t give me a choice, so I went with it …it was very hard but I counted down the cycles, I had quite a few hospital admissions and at one point I said I was going to stop but the oncologist said it was fine and I should carry on …I only had a few cycles left so I did. Ribo wasn’t an option on the nhs then so I guess that’s why she didn’t say anything. I got through it and like you was finding it tough mentally …still finding the whole process tough mentally but it does get better as the months go on. One it’s finished it was such a relief. I can’t really say about the ribo yet as I haven’t started but the oncologist said it is nothing like chemo so I’m holding him to that!

Stay strong you will get through it, I had 5 months of chemo so I guess it depends on the length but although it only finished in July it does feel like it’s been a while ago now.

I’ve got to be honest if they gave me the choice of ribo instead of chemo I would have taken that even though it’s for 3 years. (just for not loosing my hair too) but that said I haven’t been on it yet…it’s such a hard decision, I decided to continue due to the benefits of chemo but it’s your personal experience, i think its harder when they give you the choice as you have to make the decision and its fear of making the wrong one!

stay strong and positive ….the nurses always said to me the more positive you are the more you cope but it doesn’t stop you from being terrified.

Stay safe and I hope it gets better for you x

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@fancyhooves your not a coward I would do exactly the same in your shoes! As far as I’m aware they give you an emergency number the same as chemo which I don’t think help my mind as it just felt exactly the same and took me right back there!

I do feel better knowing that I have done all the things like chemo, radio, ovaries removed and zoledronic acid (coming up), if I can’t cope with it that’s that but at least we have had all the things before hand and I see it as being the last thing now unless I am looking at it the wrong way :thinking: my head is still spinning too.

Yes please do let me know, hope it goes ok x

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@mj187 thank you. I have my 2nd chemo Tuesday I am sticking with it as I wont be taking up the cdk4/6 after radiation and hormones as I think Ive thrown enough at it. Trying not to think to far ahead. My chemo :crossed_fingers: shoukd be completed the end of May beginning of June :heart:

My oncologist said I only need to do what Im comfortable with ans as im at 90% thats good enough for me. Dont want to go through at the rest for a couple of percent

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Meeting done. So - bloods were fine as was ecg. She said 1 is the aim and I’m at 1.7 (don’t ask me of what though). I went through my side effects and she said she felt it was probably Zoladex and to give it 6 months on that. Explained I’d been having Zoladex since September. She reckons what I’m feeling is hormonal - or lack thereof. Said I agree but how do I cope in full time work. She didn’t have much to say really. Just that she’d like another blood test and ecg done this Friday and another meeting week after. I told her this was exactly what the issue is - another week with 2 visits to the hospital to check things.

So we left it at me needing those and a telephone follow up next Monday. I don’t really feel anything - totally knackered with it all. She can’t really tell me not to take the drug. She can’t offer mental health advice which is what I feel like I’m having. She basically shrugged that the side effects are crap, the medical menopause is crap, but that advancements in drugs mean these are the best things to do.

So….yeah. I feel none the wiser. It’s just up to me to keep trying or decline. And I can’t seem to decline.

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@fancyhooves

thank you for the update. I do also get that gist from the oncologists to be honest which I feel makes it harder and I can see why you’re non the wiser. I have found the same, I started to get uti’s with the Zoladex injection and I swear this wasn’t helping but no one would confirm it and they kept saying to wait and see what happens as you continue…there was no other choice, I took the decision into my own hands and ask for my ovaries to be removed as I couldn’t cope with the injection for how ever many years in which the oncologist agreed that was also the best thing. I am so glad I had it done now. I am post 4 weeks after that op so I have had a bit of a gap between all the treatments so may have been given a bit of a breather.

I do feel you have to go with the flow and take control of a few decisions which are the best for you with the right treatment as they only seem to advise….it is so scary to knowing you are making the right decision. The zoladex did get easier and I had it injected into my arm which seems to have helped (rather then my belly) I had leuprolin it works the same as zoladex but not sure if it’s slightly different. It may also depends on your menopause symptoms, my main ones are hot flushes but overall not too bad.

My oncologist did say there would be a lot of appointments in the beginning, im ok with knowing that and I’m glad they are keeping an eye out.

Hope you get through the next stage, it’s hard to know what side effect from which drug is which I think is why they don’t give it you all at once!

Still keep me posted with the next couple of weeks and how you get on as won’t be starting mine until around and of march / April.

good luck x

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