Letrozole and ribociclib

Does anyone have any experience of taking letrozole and Ribociclib? I had two surgeries during the autumn then moved into 12 cycles of paclitaxel and am now on my second of four rounds of EC which I’m finding pretty brutal. I start radiotherapy in May and my oncologist is strongly advising letrozole / ribociclib combination for 3 years. I want to do whatever gives me the best chance but am finding the thought of ongoing side effects quite overwhelming and am worrying about how I will manage work etc. Anyone else on this treatment plan that doesn’t mind sharing? X

I so feel for you going through EC - it truly is brutal. Hope the end is in sight. I had chemo first - then 2 surgeries - starting radiotherapy next week, so slightly ahead of you. I have been on letrozole for 2 months - it’s been ok, joints (knees and thumb joints!) do ache as the day goes on - but exercise helps. I try and run alternate days and keep active in general and it makes a difference. I am due to start ribociclib a few weeks after finishing 15 radiotherapy sessions - I have looked into it and lots of side effects , but we shouldn’t get all of them! As my cancer was large I have high recurrence risk - so am grateful that I am being given chance to have ribociclib, just hope I can manage side effects xx

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Thanks for you’d reply jolou - good to hear you’re doing well on letrozole. Hopefully radiotherapy should be pretty straight forward for both of us - I’m having the 15 sessions too. You’re right, it is good we’re being offered ribociclib as the research I’ve read gives such positive outcomes so I’m thankful it’s available. I probably need to stop reading all the side effect info and go with the flow a bit x

Good luck on your journey x

Don’t get me wrong - I am obsessed with looking up side effects too! impossible not too.

I always think I need to know worst case scenario so if it happens I’m informed…. but sometimes can know too much!

wishing you all the best for whats ahead too xx

Hi there

I had lumpectomy, chemo, 15 sessions of radiotherapy last year.

I have been on anastrozole, which I think is similar to letrozole since August 2025 and ribociclib since November 2025. I have so far been managing ok on them. Nothing too awful in terms of side effects although I do get very tired if I do too much. I do work but it’s a desk based job from home, which helps. It is definitely less brutal than chemo.

I have worried a lot about the infection risk on ribociclib but so far have been ok.

It feels like a really long haul doesn’t it? I found it helped just to focus on getting through one treatment before thinking about the next. I still think just one cycle at a time with the ribociclib and know that I could stop at any time if it gets too much.

I wish you well.

Hello. I have been on Letrozole for 3 months and I’ve just started my 4th packet. Achey joints are an issue but interestingly this new packet is a different brand and my joints are aching less. I’m seeing my oncologist tomorrow and he will be starting me on Ribociclib. I’ve read about the side effects and I’m not impressed :joy: but I’ll give it a go because the outcome is good. I’m not back at work yet but I’m aiming to go back in July. I work in a supermarket on my feet all day and I’m really worried I won’t have the energy to come with it. We will see what happens!

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Thanks so much Helen - my plan sounds similar to yours so it’s good to hear how well you are coping. My oncologist suggested I may need to review my work because of infection risks so that has just added another layer of worry to the mix. It’s reassuring to hear you’ve been ok so far and I really hope it all continues to go well for you. You’re right about the long haul - we definitely need to dig deep!

You’re absolutely right twinks - all the reading I’ve done shows great outcomes for ribociclib so it definitely worth trying. Good luck with it - I hope things go well for you x

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The best advice I can give is TRY IT AND SEE. Some people are lucky and sail through with nil or minimal side effects. I suffered so much that I switched to Anastrozole which was a little better but after a year I packed it in. My life simply wasn’t worth living but I am quite old and therefore more interested in quality rather than longevity. I would say that those who come through okay are probably in the majority so you should certainly give it a go. All the best.

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I’ve had a very similar journey although I had EC first then paclitax, I’ve started letrozole 2 months in and so far no real side effects to speak of. I started radiotherapy this week also scheduled for 15 fractions. I went into a real tail spin at my last oncology appointment when my oncologist talked through the next stages after my chemo ( which I didn’t fully complete due to neuropathy). 15 fractions of radiotherapy, letrozole, and the ribociclib and bisphosphonates, so much information to take in. Luckily I had a check up with the breast care team the following week and they were a lot more reassuring and reminded me that I didn’t need to make a decision just yet and could have more detailed discussion about the side effects closer to the time.

As you said I’m definitely grateful for the opportunity to have such an extensive care plan but it is so much to take on board.

Good luck with the radiotherapy and I’d definitely recommend talking to your breast care team for more information if you are still uncertain.

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I’m on Ribo & Letrozole. They started both drugs at the same time in early Jan, which I think was far from ideal and I had a horrendous first few months. I had a review with the oncology pharmacist in March and she said I should have started the letrozole first and allowed my body to get used to this and then started the Ribo a few months later so not sure why my oncologist did this. I had to have a dose reduction on the Ribo (to 200) and pleased to say my symptoms are ‘manageable’ now. Mostly nausea / MSK pain but I am as active as can be with walking, pilates, swimming etc. This medicine combination is a really good one, to prevent the cancer from returning so definitely worth trying. good luck

Hi there, I had two surgeries in October and radio in December. Started letrozole in November and Ribo in Feb. Just commenced cycle 3. I was dreading it based on the side effects but I can honestly say I feel completely fine and can’t really say I’ve had any side effects. I do feel dizzy if I don’t drink enough water so important to stay hydrated. Fingers crossed you will be fine. I know I have been lucky as not needed chemo but I feel really well and am back to normal in terms of day to day life. I work full time, long hours with some travel and have not found this to be a problem. You will get the other side soon I hope. Best of luck.

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Hi, I’ve been on letrozole and palbociclib - v similar to ribo - for 2 years. I have found it’s not so bad for side effects; mouth ulcers and neutropenia in the early months but that seems to have resolved with a dose reduction. And I feel a lot less tired on the lower dose too; on the higher dose I was napping most afternoons towards the end of the cycle - not a big deal in itself for me as I only work part time. You can always ask to reduce the level you’re on if it’s interfering with your life. I think the letrozole has been the worse drug of the two for me; I already had arthritis in my feet and it’s made that a lot worse.

Hi!!

I know the long list of side effects are scary but you definitely have to just take it and see how you go. I’m one of the lucky ones I feel.

I had a lumpectomy followed by monthly zolodex, 3x EC, 3x docetaxol, 19x radiotherapy.

I then started Letrozole and my main issue was joint pain and stiffness. Hot flushes are always bad too but that’s from zolodex also and I can cope with them.

I discussed the joint pain with my oncologist and they tried me on Anastrozole for a month and I was so much better on them that I’ve stuck on it. Slight joint pain and stiffness but certainly a lot more bearable and keeping active helps it so much more, I find rest makes it stiffen more so it’s definitely a mind shift.

I was so worried about Ribociclib but can honestly say I’m fine with it. I’m 3 cycles in now and I don’t notice many side effects at all. I get the odd times when I have itchy arms but usually around exercise or a hot flushes and soon goes. I find I have to be careful with my hunger and keep up with protein. Also lots and lots of water or I feel hot flushes and tiredness get worse.

I also find I can get tired or I do too much but I listen to my body and go to bed extra early and ensure I give myself time to recover. (Just had a 4 nights in center parcs with the kids. Got stuck into all activities, swimming, etc. was exhausted after but made sure I gave myself time to recover when home).

I just try live my life as normally as I can now. I’m still having monthly bloods with the Ribociclib and I like that I’m still getting checked on and speaking to nurses. I’ve heard so much about treatment finishing and it all going quiet with no contact. I think this has also helped me mentally to cope after too.

I really hope you cope well on all the medication. Just take each step as it comes and discuss with your oncologists and nurses about how you feel as they can always help. . But my big advice mainly is water, protein, walking and weight training. :flexed_biceps:t2:. Come back stronger. That’s my plan! :pink_heart::pink_heart:

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Thanks so much for taking the time to share how you’re getting on - that sounds really positive. I’m so pleased it’s going well for you x

Hello, ive been on letrozole for ten years, the side effects for me have been, hot sweats, anger, anxiety and trouble sleeping, hope this helps xx

Thankyou Teddy, you’re right, it’s best to try and see x

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Hi millyd and everyone here who has shared their story. I had a mastectomy in November, started letrazole in January and expecting 15 days of radiotherapy in next few months, CT scan to add tattoos for RT targeting is booked on 8th May. The plan is to start ribocyclib after RT. My side effects from Letrazole are hot flushes, fatigue and the biggest is weight gain which I am really struggling with. It’s been an issue for me always and I’d got myself in a good place just before my diagnosis so I’m really gutted. I actually eat really healthily most of the time and I exercise regularly, walking and strength training at the gym. I’ve also cut out alcohol. I’m hoping it will settle. All your stories have been really helpful, I’m not so worried about taking the ribo now, it seems not all had side effects and those that did made a change so thank you very much for sharing. Best wishes to you all.

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Hello,

I’ve been on Ribociclib for about 4 months and so far it’s been ok. I haven’t felt sick or been ill. My body aches but to be honest I think it did before as I’m on exemastane and prostrap, so lots of hot flushes.

I have done everything the same and I go out out and socialise the same. The only 1 thing I’ve had a couple of UTI’s but always cleared with some antibiotics.

Hope that’s helps

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