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Ribociclib and liver markers

susiemarmite profile image
13 Replies

Liver not enjoying ribociclib. Ticked up. Now reducing dose from 600mg to 400mg. Anyone had same experience?

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susiemarmite profile image
susiemarmite
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13 Replies
Discocat profile image
Discocat

Hi Sue, sorry your having liver enzyme issues with Kisqali.I had the same thing. How are you feeling? I had fogginess, disorientation and lethargy when my enzymes were high….at worst they were 10x above normal.

Drinking loads of water and eating light healthy food helped me feel better and after a 5 week med free break they went down to normal.

We decided with my onc to skip trying a lower dose as she thought I was reacting to something specific to Kisqali…so I moved onto Ibrance instead. My liver has been stable now. After 5 cycles of Ibrance my liver enzymes have remained at normal level. I was on Kisqali at the highest dosage option (600mg) for 3 Cycles before I stopped.

While my enzymes were up I was having blood checked 3x per week…it was a bit of a pain but the only way to know that they were reducing….as they dropped the checks were reduced. Now I only get blood work twice a month.

Hope it works out, take care

Zoe xx

susiemarmite profile image
susiemarmite in reply toDiscocat

Thanks for this ... my liver only got up to 150 ... from the normal 30 range or so ... so not too bad - we are dropping to 400mg so see how that goes. Main issues for me are the high numbers which the onc doesn't like (understandably) and itchy hot skin ... which has been controllable with piriton ... and then memory loss ... wasn't sure if that was the 600mg Ribo or the letrazole or ... fingers crossed it settles back down on the 400mg and the 400mg is efficacious. x

Discocat profile image
Discocat in reply tosusiemarmite

I had itchy rash too. I first thought it was heat rash as I’d been gardening and got pretty hot cos it was the middle of summer. Had it all over my arms and lower part of legs, it took weeks to go down and only went away once I stopped Kisqali and got it out of my system. I was also warned at this time by my onc to not take any other meds that might put extra process onto the liver…no paracetamol, vitamins etc.The memory thing can be from Letrozole ….I’m also on that. Your experience sounds exactly like mine…I too thought at the time it was most likely a hormone induced fogginess. I’m as clear thinking as ever before now….which might not always be that clear😆…but I’m still on Letrozole. I suppose it could be that we get used to the reduced hormone levels in our bodies…but I think in hindsight in my case the cloudy mind feeling was connected to the liver issue.

Discocat profile image
Discocat in reply toDiscocat

Also, if it’s any consolation, my onc put this type of sensitivity to Kisqali down as being a good thing in that it meant it was actually working…a little too well if anything….in her words….but this was also based on my blood work showing tumour markers dropping and the physical breast exams indicating the mass reducing. That’s why she had no hesitation to try another CDK4/6 inhibitor….and I went on to Ibrance.

Scans confirmed that meds have reduced primary tumour 40%…in around 4 months of treatments only as I had that med free break of about 5 weeks.

Mumberly profile image
Mumberly

I am going through that same thing right now.

I started on 600mg in January but my white blood counts wouldn’t stabilize so I dropped to 400mg after 2 cycles at 600.

At the end of my first 400mg cycle (last Monday) my white counts were just enough, but my ALT liver count was 285. So I’m delayed again until it drops back down and then we’ll try 200mg. I’m wondering whether it’s better to just move to full dose of palbo instead but we’ll likely try a round of 200mg first.

The other thing that’s weird is that my white counts would rise after 2 weeks on ribo but then drop after the third week and the week off 🤷‍♀️ So I’m also going to ask about doing 2 weeks on of 400mg or 600 and then do the week off.

Good news is that my scan in April was stable compared with the one in January before I started ribo and letrozole so I feel comfortable playing this guessing game for a bit.

I had my bloodwork done this morning for an updated ALT reading then appt with my oncologist tomorrow morning. 🙏🤞🏻

Kim

8576 profile image
8576

Didn't have the same experience but have lowered the dose on more than one medicine without causing any problems,And just as an interest, my husband had his mood altterating drug reduced and went off the rails for about a week and then settled down.

Cheers, June S.

OneLump22 profile image
OneLump22

Sorry to hear this. 😔

Mumberly profile image
Mumberly

If you scroll to the bottom of this page you’ll see a section called ‘Related Posts’. There’s a conversation stream from about a month ago that you might find helpful

susiemarmite profile image
susiemarmite

Thanks.

Corrina97 profile image
Corrina97

I reduced my ribociclib dose to 400mg very early on in treatment. My neutrophils were very low and also was having visual disturbances and dizziness. Been much better on the reduced dose x

susiemarmite profile image
susiemarmite in reply toCorrina97

thanks for this - I too had visual disturbances - I think 400mg will be the right dose for me ... thanks for this

Corrina97 profile image
Corrina97 in reply tosusiemarmite

I've been on lower dose for nearly 2 years now and last scan showed it was still working. Hope you do better on lower dose too x

susiemarmite profile image
susiemarmite in reply toCorrina97

Thanks!

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