Glad you found this thread. There’s a wealth of information in here if you don’t mind reading through the posts.
I’m on my fourth cycle. Side effects were barely noticeable at first. A bit of fatigue maybe. My main problem has reoccurring UTIs (my Achilles heel) and my liver ALT levels going up. I had to abandon cycle 3 and delay number 4 because they took their time coming down. It was picked up on a blood test.
@bordercat has had similar liver issues and she’s given a whole explanation on the various classification of raised ALTs. I found it very helpful.
@pod123 Sorry for the delay in posting. I started on Ribociclib in December 2024 and have just finished cycle 11.
Like others, I get a bit tired towards the end of week 3/start of the off week. Not bad enough to stop me doing things, just a bit more effort! I also get intermittent skin issues, dry and itchy.
As @liteleft said my main ‘problem’ has been high ALT, but hopefully this has settled now. I saw it start to rise mid cycle 2 and only in cycles 9-11 that it has been normal. I have had to have treatment breaks and from Cycle 4 I had to reduce to 200mg. As discussed elsewhere in the thread, not an issue. It just means I am a slow metaboliser and 200 is just as effective for me as 400. After my first cycle on 200mg I also needed a treatment break, my ALT was higher than the previous cycle of 400! Started to behave from cycle 7.
There are guidelines regarding ALT levels and what should happen based on the clinical trial data. You can continue with Ribo even if ALT not in normal range, provided not too high (this is usually <105).
During all this I drank lots of water/squash, kep active and didn’t drink alcohol and I think some or all of these helped. I didn’t drink a lot pre Ribociclib but it is only from Cycle 9 that I have enjoyed a glass of red the first weekend of the cycle.
It’s a pain all the stops/start and blood tests, especially as I live about 1.5h from hospital but if you can, stick with it. The data does seem to show that it is worth it.
@mintea299 that sounds scary, hope things get better.
Thanks @bordercat Im having the same problem. I had to stop in November due to an ALT of 972. I restarted ribociclib on 13 January with my zoladex and zometa after my ALT was back to 37. However I went to the GP for the health check they are offering and had a call with an emergency appointment today. They told me my ALT was again over 930 after only 7 days on the 200mg dose. Im gutted. Im going to have to call my consultant oncologist tomorrow to discuss further.
However it sounds like you’ve managed to get them to keep you on the lower dose and things have evened out after a few cycles. How did you get to that point if you dont mind me asking?
My oncologist had said that if it didnt work this time there was no alternative as I cant have abemeciclib or palbociclib.
An update from me. My oncologist says I am in the minority who are clearly just to sensitive to it. Im absolutely gutted. I lost my mum to this disease in 2019 (her cancer came back 12 years on from her original diagnosis) and I had hoped Ribociclib would help me stay cancer free. Im only 41 and I have 2 young girls. It all seems so unfair right now.
Im back to weekly monitoring to check my liver recovers again. And due to see my oncologist again mid Feb to see what the plan is now.
I wish you all well on this treatment and I hope it works for you all. X
@redruth sorry for late reply. I am so sorry to hear about your ALT and also your story. Losing your mum is tough, my mum died 19 years ago (at 62) and I still miss her and wish I could have one more day with her. To have the same disease as your mum, must be so tough.
I was fortunate my ALT was always less than 250. I am not sure how I managed to get things resolved, I think one of the main things was my liver just got used to it eventually. Unfortunately with your levels, they are not going to risk that .
Recurrence is something we all worry about, we all want to do what we can to minimise it and must be gutting to have this option removed. It is just one tool though.
Easier said than done (and please don’t think I am belittling the situation) but don’t dwell on it. Focus on your your girls, love life and love those closest to you, have fun and try not to worry. There have been huge advances in treatment and who knows what is round the corner. There may be another option for you in the future.
@bordercat thank you. I appreciate that. I am thinking along the same lines. I think that I just need to let myself process this and come to terms with it. I tried this option and that’s the important thing. Its just my oncotype score was 59 which was the really scary statistic. But im hoping all the other meds do their job. I re ran my Predict score last night and that said 88% alive in 15 years based on my treatment options including the bisphosphonates. So I have to hope that I am in the 88% and keep positive. Wishing you all the best for the future
@redruth absolutely, you need totake time to process and be kind to yourself.
Also, as I understand it, Predict will be worse case scenario as some of the statistics will be based on data from people who had cancer e.g 10 years ago and as we know a lot has changed (for the better) since then.
@redruth best wishes to you going forward. I’ll be thinking of you
And thanks to you, @bordercat for your kind and sensible responses. You make a very good point about the Predict tool being outdated by the new treatments.
Hi, I’m mid cycle 6 now and wondered if anyone else is still getting new/different side effects a few cycles in? It feels like I get something different most cycles eg itchy skin, mild rash, different aches/discomfort, random bruises, UTI. Have discussed with my oncologist, bloods are fine and I’m currently on 200 mg dose this cycle in case it helps but really interested if anyone else is still getting new side effects a few cycles in and when things have started to settle? To know they may not settle and new side effects can happen throughout would actually also help. Thanks!
Just seen this. Ribociclib is now approved by NHS if you don’t know. Talk to your oncologist again if you have not already. Scandalous that the NHS wouldn’t approve it on costs grounds as it appears to be a bit of a game changer in action. I’ve been on it for just over a year.
I’m on cycle 5 now. I’ve had a couple of infections and been getting cold sores regularly. Random symptoms I’ve had are high ALT levels, dry, stiff skin around my thumbs and peeling skin on my feet. I’m still on 400mg. Was surprised my ALTs came down during my cycle 4.
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