Ribociclib- side effects

Hi Lindsey what does ribociclib will you be taking?

Lee x

Should say dose

I'm not sure. Its for prevention of recurrence rather than trying to deal with advanced cancer but not been told yet what the dose is. 

I am on Letrozole and Ribociclib (400mg)   I haven't been too bad with side effects.  My main issue with the Ribociclib has been constipation which is apparently less common than diarrhea.  Sorted this out with a daily tablespoon of golden linseed on my cereal.

Some aches and pains, feel like I have aged in the last few months, definitely can't walk as fast but can still manage a decent few km just slower.

Some mornings I just feel a bit offish, and I always welcome the week break as my energy then returns.

Been on the medication for 6 months now, had some terrible hip pain in the 2nd or 3rd cycle but it only lasted about a week and then settled down.

Feels like it's worth it as I am high risk of reoccurrence. 

Good Luck and enjoy your holiday,  2 months should give you a fairly good idea of what to expect and if you can time your start date so you get your 7 day break while you're away you have that as a bonus.

Hi Lindsey I would think it would be 100mg or so.  I have been on 600mg for secondary cancer.  The main side effect I had was a terrible rash.  I was fine for the first three months and then it started.  I have now been on 400mg and am fine with it.  So I would say have a fabulous holiday and enjoy every moment.

Lee x

Likely to be 400mg for prevention, taken for 3 weeks and then a 7 day break.

Hi Harvestmoon I didn't realise the dose was that for prevention.  Good to know thank you.

Lee x

Thank you. My holiday is for 3 weeks to Asia and is a once in a lifetime trip that I had to cancel last year due to radiotherapy so the thought of side effects or even hospitalisation whilst on this trip worries me. My understanding is that for my cancer it has a relatively low risk of recurrence (10%?) and I would only get a 2-3% improvement on that with the ribociclib. I'm wondering the benefit really outweighs the risks and quality of life. 

Only a decision you and your family can make really.  

Try discussing it with your oncologist, there maybe options if they know the reasons. 

Good luck whatever you decide  x

Hi  LindseyC23, was just wondering why you couldn’t start the Ribociclib when you return from your holiday? 

I started Ribociclib for Secondary Breast Cancer and it affected my Neutrophils and my Liver and Kidneys. So after reducing the dose twice I was taken off of it and put on Palbociclib which still affects my neutrophils but am coping with that by delaying treatment each month! 

My only concern and something you should probably discuss with your oncologist is this drug can cause neutropenia so you need to be careful if you feel unwell and would need to be checked out if that happened. They do regular blood tests while on this drug, especially at the beginning when they are trying to find a dose that suits you! 

I personally would sit down with them explain that this is a holiday that you have already missed out on once and see what they suggest! But personally I believe that we have to live for today and if you really want to enjoy this holiday I would delay starting this treatment. I don’t see why a couple of months would make any difference! But perhaps there’s a reason they can’t, in which case ask them what they feel is the safest thing to do, go away while on these drugs or not take them! 

Sorry if that’s just confused you more. It is a tough decision but only one that you can make really. Just make sure you get as much info as you can and question why the treatment can’t wait a few more weeks to start.

Wishing you all the best and hopefully an amazing holiday. Sal xxx