Ribociclib

Hi, ribociclib is approved for use in the UK - my consultant ultimately decided to prescribe me palbociclib instead but ribociclib is definitely being used in this country.

Hi, I am currently taking Ribociclib through the NHS and have been for almost a year. To begin with I had some dizziness about 30 minutes after taking it but I made sure I was sitting and eating my breakfast at that point and it soon cleared. I no longer experience the dizziness. I had nausea for a couple of days at the beginning of the cycle for two months but my cosultant prescribed anti nausea medication which helped. Overall I have had a really positive experience with the ribo. This time last year my cancer was spreading rapidly, at the moment it is dormant and there has been no new spread since I started the medication. If you need to know anything else, just let me know. 

Thank you. That’s reassuring. 
interesting hear you’re receiving it on the NHS too. 

I hope your story continues to to a positive one. 

Thank you. 

I hope you get the approval soon. 

I’m going to be starting this soon. When my mastectomy has healed up along side hormone treatment 

I think it has been approved in the UK now, as I have been waiting for it and my oncologist wants to start it by April.

It’s apparently been approved for some purposes but still awaiting further approval for other uses (including mine). 

I’ve now been taking it for a week and so far side effects are manageable. 

Hi, I am just about to start taking ribocicclib and was just wondering if you would be willing to share a bit more of your experience. I am concerned about the changes in my hair and how likely it is that I will be able to get back to my 'normal' life once I start this treatment. I would really appreciate any information you have. Thanks x

Hi

How you get on with side effects might well depend on if you are taking it for secondary breast cancer or primary breast cancer as the dose will be different,  It licenced earlier this year for patients with primary breast cancer ( I think it's still just for private patients but it will be available on the NHS at some point) . You need to find people who are in the same position as you (secondary or primary) I found a group on a Breast Cancer Now forum who are taking ribociclib for primary breast cancer, and that was helpful.

Nmill

So far the worst side effects have been almost daily headaches. I always ask myself “is it worse than the alternative?”  The answer is No

My hair and skin are very dry but, again, I ask myself the same question and the answer is No  

I’m losing a little more hair than usual but not so much anyone would notice.  

good luck with your treatment