@jbb Wishing you all the best for tomorrow. I take my Anastrazole and Ribociclib at breakfast. Like you, I work full time and fortunately not impacted things and haven’t had any nausea. My evening meal time isn’t fixed (depends on how busy work is) and would rather take it at the same time each day. Also, don’t take any tablets at nice, so nice to get it all done in the morning.
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Hi @jbb
I take mine after breakfast with Letrozole but going to ask my oncologist if I can swap and take after my dinner because of the fatigue and ickiness in the first week. 
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Thank you all.
I have done all my tests and good to go. First tablets taken this evening (2 x 200mg)
Will report how I go and if I have any side effects.
I read this was only licensed in the UK on the 4th February (2025) for primary breast cancer so we are incredibly lucky. Not yet approved for the NHS
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Good news, hope all goes well and yes, we are very fortunate.
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Hi all, thanks so much for starting this thread. I started on Ribociclib for primary BC at the beginning of the year, 11 months after finishing my main treatment and it’s v useful to understand others experience of it. Am very grateful to be on it but I was wary as I was just about managing post surgery, chemo, radiation etc, with the Zolodex / Letrozole / Zometa combo and felt a bit overwhelmed at chucking something else into the mix! So far it’s ok but I’m definitely more tired and ‘flat’, and also experiencing the indigestion / nausea others have flagged. And a slightly dodgy tummy. My diet is good, as is exercise (altho my energy for it at the moment is definitely diminished). Hopefully it will settle in a couple of months. My neutrophils have been fairly consistent around 1.2 which is lower than they ever got on chemo but again, hoping that settles. I have a very slight rash across my chest, looks a little bit like some broken blood vessels - has anyone else got that? Also I’ve lost a load of eyelashes which is so annoying given I’ve been trying to grow them back post chemo. Anyone else find this? Sending love and energy to you all 
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Hi, really pleased to have found this thread! I will be starting Ribociclib for 3 years in about a month for primary breast cancer as I am in a high risk category.
I asked the oncology pharmacist today if I will be able to return to work full time on this drug, she gave a very non committal answer 
I do understand everyone reacts differently. 6 months of chemotherapy has certainly taught me that but I really want to be able to return to ‘normal’ life.
If anyone has any experience of how energy levels are effected and ability to work and what adjustments may have helped I would love to hear about it.
Hi everyone - hope you’re all doing well!?
@lizk I am only on cycle two but I am working full time and it has definitely not affected that for me at all. I should say that I also worked full time throughout my active treatment, including chemo & radio - I just had two weeks off for surgery. Just best way for me to keep powering through 
I’m finding so far that my energy levels are really good which I am so pleased about. I am doing a good amount of exercise which I think really helps, and also helps relieve the body pain / arthritis which seems to be the main side effect for me so far.
Cycle one I took both Ribo and Letrozole in the evening but found it messed with my sleep a lot so this round I am trying it in the morning after breakfast. First few days I was more tired and felt the pain a little more but now feeling great - so hoping that is just part of my body getting used to it generally - thank you @Jess_1 for that reassurance!
I think we all have to find the right rhythm for each of us but really appreciating everyone’s support and sharing on this forum. Thank you all 
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Thank you! That’s really reassuring and hopeful.
I worked through the EC part of chemotherapy but just had the last couple of months of for weekly Paclitaxel. Will have some additional time for another surgery but really looking forward to getting back to as close to normal life as possible!
I agree exercise seems to really help with fatigue and muscle / joint pain I have experienced with paclitaxel.
Hi
Like Hiker I worked during my treatment as well (I was fortunate not to need chemo) and so far have had no issues working while taking Ribociclib. I am about start my 4th cycle next week.
I am definitely more tired in the morning, but I force myself to get up early and get a least a half hour walk. If I can I then do an online class for half an hour (the BUPA app has lots of recorded classes). That usually wakes me up for the day ahead and I am fortunate I work from home. I also try and make sure get some time to relax at the weekend if possible, especially on a Sunday.
Thanks to everyone on this forum for support, have a good weekend all
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Thank you for your reply, another hopeful and positive message! Getting in some movement at the start of the day is a really good plan.
I will be going into the office 2/3 days per week but after being off for a while with chemo I am really looking forward to being back in and having a routine.
Hope you are having a restful weekend
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My update: one week in/ cycle 1 and seems to be OK so far. I am working full time from home.
I am tired, but I sleep so badly since I started taking Letrozole (plus anxiety from so many procedures) that I can’t tell if I’m extra tired from Ribo or if Ribo is making my sleep even worse.
I’m taking in the evening now and will try morning on my next cycle and for cycle 3 will decide which way to go.
I am more hungry than I used to be, so I will have to be careful on the weight front.
I put the joint ache down to Letrozole (and possibly chemo). I certainly can’t move like I used to only 12 months ago. I’ve been on Letrozole for about three months and the joint ache got worse after that.
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@jbb Glad all going ok, hope the tiredness eases. Not sure if you have tried Glucosamine Sulphate (1500mg)? My oncologist recommended it for joint pain and it certainly helps. I also switched from Exemestane to Anastrazole after a year.
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So I had my pre. cycle 4 blood test yesterday. I don’t drink a lot (4 or 5 units a week max) but for the last month avoided alcohol as my ALT was 83 (Grade 1). Anyway, blood results yesterday showed ALT was 189 (grade 3), so treatment has been paused for 2 weeks and if I restart will be at 200mg. Gutted this has happened so early, so fingers crossed it comes down and I can start/stay on 200.
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@bordercat Oh no. I have literally just found out before going to pick up cycle 3 that my ALT is now 111 and waiting to hear in the next ten minutes whether I have got to have two weeks off 
It’s so upsetting this happening so early on
Hi I hope someone is watching this thread
Ribociclib just been approved for NHS use & I’m tee’d up to perhaps start.
How often are bloods checked & is it worth doing?
I’ve done chemo, radio, first Zometa infusion , Zoladex/ Letrozole
Now I’m wondering if I’m just going to throttle my body more
Any advice welcome
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Hey, I’m glad to hear you are able to hopefully have it via the NHS. Bloods are taken and checked every month, before you are given the tablets for the next cycle. They look at your red and white blood cell levels, liver enzymes and kidney function. For the first 3 cycles you also have an ECG. For me, I feel it is worth it to take the drug, I am young and had a grade 3 cancer, I want to give myself the best possible chance. However, there are no guarantees and it may not work for me. I said to myself when starting, I’ll take every month as it comes, if the side effects becomes too much and my body is suffering, I can always stop. Overall, my side effects have been fatigue and some nausea, not brilliant but not horrific either. Definitely chat through the pros and cons with your oncologist, they’ll be honest about whether they think it’s worth you taking it in your particular situation. Always here for support x
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Hi everyone, so glad to find this group. I’m due to start taking Ribociclib tomorrow (400mg daily) and have been feeling really anxious about all the potential side effects. I cold capped during chemo and kept about 40% of my hair Has anyone experienced hair loss on Ribociclib?
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Hi,
Sorry for late reply, issues with email so didn’t see notifications.
@puglover56 How did things end up.? Got an email from my oncologist and she said the high ALT is common with Ribociclib and she expects it will recover in 2 weeks and I should be able to restart.
@idcand49 Jess_1 has summarised it really well. There is quite extensive monitoring in the first six months, so any problems are picked up quickly and plans put in place. Understand the concern of adding something else. I didn’t have chemo but when I started ribociclib I was a year post radiotherapy, on AI, Prostap and Zometa and had got in a ‘routine’. So was concerned that adding something new might upset things. I am also about 1.5 h drive from the hospital, so the intense monitoring was also a concern, especially as I work full time and tiredness being one of the known side effects. However, the opportunity to reduce my risk of reoccurrence overweighed all that. Touch wood, all good so far apart from the ALT and apart from now being a little bit more tired, not really causing physical problems.
@Rachyrach not had issues with hair loss.
Good to hear approved on NHS now. I saw MHRA approved in February but didn’t realise NICE and SMC had as well.
Sorry this post is so long!
Good luck everyone xx
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@bordercat Hi ya, rather frustratingly the oncology nurse said I could continue Ribociclib but pharmacist said no. I’m having more bloods on Monday and then they will decide if I can continue or pause for longer. Fingers crossed it goes down although the nurse said it wouldn’t be unusual for it to carry on rising for a while. Guessing this will delay my three month scan which I’m really disappointed about. Felt very teary about all this today - need to dust myself off and cheer up
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Thank you all for your experience
I was “ok” with chemo so hopefully no setbacks or 
side effects
Glad it doesn’t cause hair loss either
Anyone gain weight? I’m hoping no 
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