Important update: Your Online Network will be 'Read Only' from 5pm on Wednesday 19 March, This means:
you can search and browse to view public discussions and comments, however you can't sign in, view private group discussions, add new posts, send messages or join private groups (read full details via link) here.
you can search and browse to view public discussions and comments, however you can't sign in, view private group discussions, add new posts, send messages or join private groups (read full details via link) here.
Ribociclib Side Effects

cactusk
Member Posts: 74 ✭
Good morning,
Sharing my experience with Ribociclib for early stage BC.
(Diagnosis Nov 23, Stage 2B, Grade 2, WLE, Rads and then Letrozole / Ribo / Zometa / monthly zoladex)
I had been on the Ribo medication (400mg daily, 21 days on 7 days off) for 5 months when my standard blood tests came back with high liver enzymes. I'd been feeling more tired than usual, but figured this was because I was slowly starting to do more. My wee was very dark, so I figured i wasn't drinking enough water.
2 weeks later (whilst off the ribo) my LFT was even worse.
After seeing a gastroenterologist, having a liver ultrasound, MRI, and luckily avoiding a liver biopsy, the conclusion was Drug Induced Liver Injury.
An uncommon but known side effect of Ribociclib.
This will no longer be part of my treatment regime, and it'll be weeks to months before my liver function is back to normal.
I was wiped out for a few weeks. No appetite, nausea, constipation, fatigue - i lost 4kgs in 4 weeks.
My med onc has been away and I've been seeing a locum, but when she returns (my next appointment is early November) I'm going to ask if there are any other side effects I should look out for on my other meds.
Just when I thought i was doing so well, and now i have to get physically stronger (again) and then mentally get my head around the fact that the Ribo for early stage isn't for me.
My BC nurse said 'well, the letrozole is the main one, the ribo was a bonus' and this really concerned me. Significant (but very luckily) reparable liver damage as a 'bonus'?
The gift that keeps on giving.
Trying to not let this get me down, but boy oh boy.
Sharing so that hopefully others can be aware of this rare side effect.
Kelly
Sharing my experience with Ribociclib for early stage BC.
(Diagnosis Nov 23, Stage 2B, Grade 2, WLE, Rads and then Letrozole / Ribo / Zometa / monthly zoladex)
I had been on the Ribo medication (400mg daily, 21 days on 7 days off) for 5 months when my standard blood tests came back with high liver enzymes. I'd been feeling more tired than usual, but figured this was because I was slowly starting to do more. My wee was very dark, so I figured i wasn't drinking enough water.
2 weeks later (whilst off the ribo) my LFT was even worse.
After seeing a gastroenterologist, having a liver ultrasound, MRI, and luckily avoiding a liver biopsy, the conclusion was Drug Induced Liver Injury.
An uncommon but known side effect of Ribociclib.
This will no longer be part of my treatment regime, and it'll be weeks to months before my liver function is back to normal.
I was wiped out for a few weeks. No appetite, nausea, constipation, fatigue - i lost 4kgs in 4 weeks.
My med onc has been away and I've been seeing a locum, but when she returns (my next appointment is early November) I'm going to ask if there are any other side effects I should look out for on my other meds.
Just when I thought i was doing so well, and now i have to get physically stronger (again) and then mentally get my head around the fact that the Ribo for early stage isn't for me.
My BC nurse said 'well, the letrozole is the main one, the ribo was a bonus' and this really concerned me. Significant (but very luckily) reparable liver damage as a 'bonus'?
The gift that keeps on giving.
Trying to not let this get me down, but boy oh boy.
Sharing so that hopefully others can be aware of this rare side effect.
Kelly
Tagged:
4
Comments
-
Thanks for sharing @cactusk, it's good to know what to look out for on these drugs. I've been given abemaciclib for early stage breast cancer, the initial dose did not suit me, and wasn't sustainable long term, so I'm having a break and then trying again at a lower dose.
While I'm extremely grateful to have the opportunity to try this treatment, it certainly wasn't feeling like a bonus. I'm hoping the lower dose will suit me much better.1 -
Hi @cactusk ,Oh wow!! Kelly, I'm so sorry to hear how horrible your treatment has been, so horrible.I haven't been around this forum lately much as I think I've recovered from last years breast cancer and now fighting bladder cancer and mostly on another forum where there's a few with similar cancers, but no where as helpful as this forum. I miss this forumI'm so sorry I missed all this and hope your liver recovers well, it's just terrible what you've been through, you poor thing.As you said our livers are amazing and can recover damage well, so that's one positive.I know trying to find a positive sounds ridiculous, but I find it helps to do that, ( well, helps me anyway)Look ahead to what you'll do, plan out things like your exercise like swimming and walking, anything that'll cheer you up because you WILL get there.Sending lots of hugs,Cindi xx1