Ribociclib Side Effects

I’ve been on Ribociclib and Letrozole for 2.5 years and apart some nighttime hot flushes and the occasional afternoon nap I’m going well.  However, it didn’t start that way!  Are you on the 600mg dose?  That did not agree with me at all but the main problem  was low neutrophils.  My dose was reduced to 400mg…..still not good so for past 2 years I’ve been on 200mg and that suits me.  Getting the dose that suits you is the answer.  Your next blood test will tell your oncologist how you are coping.  Best wishes.

Hiya

thank you so much for your reply

so - I’m actually now in hospital as the diarrhoea is terrible and high temperature. Just waiting to find out what’s going on ! 
yeah I’m on 600mg of Ribociclib, it’s certainly starting to look like I am also unable to tolerate the high dose, it’s good to know that the dose can be reduced as I can’t cope with these symptoms for the long haul. 
it’s encouraging to know that you have responded so well too - sending you continued best wishes x

Sorry to hear you are in hospital……diarrhoea too!  These drugs that help us have various side effects…I’ve not had that one.  Apart from low neutrophils ((white blood cells) which can stop or delay the next  Ribociclib cycle, my worst side effect was my taste buds went haywire and everything tasted awful…..I was really miserable.  Life now is as normal as it can be, we just plan our life around medical appointments.  You will get there too.  My oncologist assured me that the 200mg dose is effective and my bloods and scans have been good ….next scan is tomorrow.

Hope you feel much better soon. X

Hope you’re feeling better I’m due to finish my first cycle of Ribociclib and Letrrazole tomorrow and so far so good  I believe the diarrhoea you are enduring is a common side effect and one my consultant was concerned about due to me having microscopic colitis,I was therefore commenced on the middle dose of 400mg daily.

Hi just like the other replies I am also on both Ribociclib and Letrozole and had to have my rib dose reduced because of the neutrophils - they start you on the higher dose to kick everything into action and its very common to reduce it.

In my experience the start of every new cycle always is the worst so I now take loperamide which they gave me at the hospital. I also take omeprazole and have even been given buscopan. There are lots of different things to try and all worth a go. 

Have you talked to your oncology team about your planned holiday? Are you flying? The biggest problem with being on chemo is the risk of infections and they take it very seriously. I was told that it was better to come off chemo if I wanted to go on holiday. Maybe chat it over with your team?

Hiya

im finally home so feeling a lot better now thank you.

i️m glad you are doing well in your treatment, it seems to be a bit of a lottery how we will respond to it.  They have paused the Ribociclib for now and I see the consultant on Monday. I’m going to discuss going on the 400mg dose - I don’t want to go through that again ! 

Hiya

thabk you for your reply, it’s comforting to know I’m not alone in this

I’ve read quite a bit about having a lower dose so think it naught be the way forward for me. I wasn’t sure if I could take things to settle my stomach. They’ve now given me lorperamide so hopefully that will help.

im going to discuss holiday with Oncologist on Monday, I’m staying in the UK as didn’t want risk abroad just yet. I’m hopeful that I can be on a break from chemo when we go

glad you are doing better and pausing is a good idea. I have paused lots of times when I have had health problems like infections so its ok. And yes a lesser dose might be the answer but don't forget to ask for something to take if the tummy upsets happen - I can definitely recommend loperamide as it works really well for me when things are not good

Hopefully you will settle on a lesser dose as side effects are not pleasant. Take care xx