That’s my biggest problem… painful muscles in my legs and bottom and joints just aching all the time… and I’m only Cycle One!!
I’m on anastrozole and I’ve been fine so far… good luck everyone. We will get through this !! M xx
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I think the joint pain is from the lack of oestrogen in our bodies. I’ve been on Letrozole since my appointment after last chemo. I had a two week break while I was recovering from radiotherapy as the painful joints were disturbing my sleep.
You’re right though - we will get through this!
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I had my blood tests, ECG etc done today and am due to pick up the tablets for cycle 1 tomorrow. The nurse flagged some things my oncologist hadnt (even tho I asked if I just take ribociclib (yes) or have to take any other tablets too to counter the ribociclib side effects (no) which I wondered if anyone’s experienced on the 400mg/200mg dose?
- if blood count goes really low, need a blood/platelets transfusion
- diarrhoea so bad it needs medication (I’ll get some to have at home)
- nausea that needs anti sickness medication (also provided if needed)
- dietician appointment bcs I’m taking ribociclib, not sure what to discuss.
Any tips from those who’ve taken a few cycles would be great, thank you!
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Hi Lola, I’m now starting cycle 20. I haven’t needed a transfusion so far, but neutrophils have been low a few times. They prescribed me diarrhea meds for the first couple of cycles, but I never needed to take them as I didn’t have that as a side effect. I sometimes take an anti sickness tablet, metoclopramide because I sometimes have nausea, but most of the time I manage it with eating small meals, ginger tea and acupuncture. I haven’t been referred for a dietician appointment, but if you are underweight perhaps it would be helpful? Could also ask the dietician for advice on eating if you are nauseous? The only foods I was told not to eat are grapefruit and pomegranate as this can interfere with the medication. Hope your first few cycles go well 
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Thank you Jess, that’s reassuring, especially as you’re so many cycles in. I started today so now just need to see how it all goes🤞
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So glad I’ve found this thread I’ve just been for my pre assessment today and I’m due to start Ribociclib on Friday with Letrozole and Goserlin. I’ve just been diagnosed with a local recurrence on the chest wall and in a lymph node and was dreading the thought of chemo all over again but they have put me on a Ribociclib path instead to see if they can shrink and remove the tumour.
I had a mastectomy and chemo followed by 5 years of tamoxifen in 2017. Finding stories about people’s experiences so far is really helpful so thank you all for sharing.
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Hi all
I am due to start Ribociclib next week and have found this thread very helpful. I have had surgery, chemo and radiotherapy in that order , finishing in July this year. I am now on Letrozole and am tolerating it well especially the brand I’m on now. I am a bit apprehensive about ribo as I wasn’t expecting to be put on it but because I’m at higher risk of a recurrence my oncologist highly recommends it. Im getting it on the NHS , with fortnightly monitoring to start with. The list of side effects is daunting but have felt reassured after reading all the comments. Fingers crossed side effects are minor and blood tests ok !
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So sorry you are having to face this yet again - it’s what we all dread, but so pleased it may help you avoid chemo.
I presume that most of us are taking this for three years. My fear wlll be coming off it rather than the side effects during that time.
While I take it I feel I have extra protection. I need to understand why we stop after three years eg long term effect of taking the medication. I know the studies did 3 years
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Thanks no one wants to be here I’m sure, I have been told 6 -12 months of Ribo in my case (I know I’m in a bit of a different situation to most of you but I’m lucky (if that’s the word) it’s a local recurrence that’s it seems has not spread anywhere else) they just want to try and shrink the tumour and remove if they can then hormone therapy for life if I can tolerate it. I have had the most amazing 7 years since I last finished treatment travelling all over and I intend to continue- if cancer gives anyone anything positive it’s a kick up the backside to enjoy every minute of life xx
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I think that is a completely normal feeling whilst you are being monitored yo ufeel safe - when I finished chemo last time it felt like I’d been left to kind of drift on without any safety net if that makes sense.
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I’m on 7 day break of first cycle of nhs ribo and happy to report that I’ve experienced no side effects as yet. Bloods have been normal.
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I start this Fri!
Well, I collect the tabs. When do you take ir to avoid nausea/ fatigue ?
The nurses have said it’s not like chemo.
Side effects don’t build so that seems like good news x
I’m on day 7 of cycle 1 and take mine in the evening as that’s when I’ve been taking letrozole. They suggested morning was preferable but when I asked why it was just as people remember better to take tablets in the morning rather than bcs of the medication.
My only side effect so far is a nettle like rash on part of my hand that started on day 4 which I’m now taking an anti histamine tablet for, which seems to be working. Will see if that clears or not. I havent taken the anti sickness tablets as I wanted to see if I felt sick first (I havent).
Hope it goes well for you too.
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Like @lola25 I take mine at night when i take my letrazole. It has not made me feel ill at all. I had an ulcer but it went with mouthwash and coukd gave been unrelated. I know some people do get some side effects, and there is a lot of blood monitoring, but my dr reassured me that it is well tolerated by most.
Hello, I’ve just come across this thread. I’m currently just on Tamoxifen but have now been offered this too. I have an appointment at the hospital tomorrow to discuss. I’m a bit daunted after reading about all the side effects and blood tests etc. I need to have a read through some of your experiences but if you have any top tips of good things to ask about I’d appreciate it.
Hi
I am lucky enough to be offered ribociclib and on my first cycle. Fpund it can make me feel sick if I take it before breakfast, otherwise fine.
Had to have a break from letrozole as it has given me carpul tunnel syndrome.
2cm lump picked up on routine mammogram had lumpectomy, chemo and radio.
Hi, does anyone know if you can start Ribociclib three years after being diagnosed and having treatment for breast cancer? I had one node involvement, so really should have been offered it back when I was first diagnosed, but I had a terrible team and my treatment was shoddy, to say the least. I have switched hospitals since and want to ask the new onocologist if I can start it now, but I am not sure if I am eligible and how to ‘present’ my case.
Hi, my understanding is that you have 12 months from the end of your radiotherapy to start it, altho obviously one for your oncologist to confirm if you’re eligible. It was only approved in the UK for early breast cancer at the start of this year/end of 2024 though and the NHS only approved it for 1-3 nodes in July 2025 (which is why I’m on it), altho I understand it’s been used for advanced breast cancer for a while. So it’s a new treatment for early node positive BC, that may not have been approved when you were diagnosed/having treatment?
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Hi, thanks for the reply, Lola25. When I was diagnosed, you were eligible if you had 102 nodes involved. I had a rubbish oncologist, who just didn’t listen to my concerns or take my view into consideration during treatment. I had to fight for everything - and get my GP, who was very supportive, involved. She listened to another health professional, but not me. I would really like to be considered for it now, but I have a feeling that because the trial only looked at giving it to people at the start of their treatment and I am well into three years after diagnosis, the new oncologist will say I don’t qualify for it now.
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Hi Lola, I’m on my 7 day break of Cycle One. Following my bloods being taken on Monday, they rand today saying, I have to stay off the Ribociclib for another week, as my white blood cells are low which means I’m susceptible to infection and sepsis… bloods again next Monday and perhaps a change of dosage, currently on 400mg. I’ve had pain in my thighs and joints, walking upstairs is a painful chore. A mouth ulcer and slightly sensitive teeth. I’ve had constipation and/or only pooing ‘full stops and commas’ as I call them. Very uncomfortable. Prune juice has helped me. Very tired, but thankfully I am at home retired.
Good luck with your first cycle and it’s great we can talk through this! M x