Ribociclib (with tamoxifen)

Hi, I was just looking for people’s experiences of ribociclib? I am 3 yrs post mastectomy for a large (65mm) tumour, but without lymph node involvement, I also had a low oncotype score. I had radiotherapy. I have been on/off tamoxifen as it causes me extreme anxiety, which in my senior role at work has caused me difficulties. Ive just been for a check up and been told that I would now be eligible for ribociclib and that someone will contact me - is this a good or bad thing? Im so scared of recurrance (I am 43 so many years ahead of me I hope!), but need a quality of life, particularly to continue with my job. Your thoughts and experiences would be welcomed. :blush: Thank you x

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Hi @Pippy14 i don’t have any ribociclib experience to share, sorry. Hopefully some others will do but I definitely get your need for quality of life. Tamoxifen, letrozole and zoladex all helped screw mine up even more than the chemo. I hope you are able to get enough information to be able to make an informed choice that works best for you so you can maintain your job how you want to. :smiling_face_with_three_hearts:

Hi @Pippy14 im 48, currently in the middle of chemo and ribociclib is in my plan so I am also very interested to hear from other ladies who are taking this.

Hi

I have been on anastrozole and ribociclib for a few months now. Supposed to be on ribociclib for 3 years and anastrozole for 10.

I definitely don’t feel like my normal self on these but don’t know which is to blame or maybe it’s still a hangover from the chemo and other treatment of last yearI am much more tired, achy and anxious now. I do work but am self employed and work from home which definitely helps.

I feel it is manageable at the moment and just take one day at a time. I don’t like the fact that the ribociclib puts me at risk of infection, not as bad as chemo, but still anxious about that. But I haven’t had any infection so far …

My thinking was I want to do anything I can to stop the cancer coming back so I would try it. I have at the back of my mind that I can stop it at any point, which helps.

It’s a horrible decision though. I agonised about it for ages.

I wish you well.

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Hello :waving_hand: I’m on zoladex, letrozole and ribo! The main thing I would say that I wasn’t prepared for was your white blood count can really fluctuate! They do a pre chemo blood and obs on the Friday and if ok I get my ribo on the Tuesday. If not, they delay the next cycle of Ribo for another week which usually allows time to bring them back up again. They are strong tablets so they reduced my dose and I’m getting used to them. I’d say main side effects are hot flushes, joint ache, fatigue but most of that occurs on letrozole and zoladex anyway so I can’t say it’s the ribociclib that is doing it! Started in November, think I’m on round five and it seems to be getting easier x