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raised liver enzymes

BritSammy profile image
14 Replies

hi fellow thrivers

Just wanted to ask whether anyone had an increase in there liver enzymes whilst on Ibrance/fulvesterant. Mine have increased week after week to over 150 ALT to the point that they have stopped me taking ibrance. Ultrasound and PET scan show no uptake of meta in liver and the meta to my spine remain stable. It is a very time as I am not on any meds for the cancer until they can find out what’s going on with my liver. I will be off meds for a month. I don’t feel unwell but know that something must be going on with such elevated liver enzymes. Anyone got any experience of this please?

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BritSammy profile image
BritSammy
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14 Replies
BritSammy profile image
BritSammy

please excuse the awful grammar and spelling in my previous post. I didn’t have my glasses on. I forget to mention I have been on the Ibrance/Fulvesterant regime since 2021. Mets to two areas of the spine.

Kerryd22 profile image
Kerryd22 in reply toBritSammy

I was on Afinitor and Exemestane and after ten months my liver enzymes were literally sky high. Much higher than yours right now. I had to stop Afinitor after every possible cause was ruled out. Liver inflammation is a very rare side effect of Afinitor, less than 1 percent I think. Maybe that’s what your problem is too. I had multiple scans to confirm that my liver wasn’t actually affected and I stopped Afinitor in April 2017. I am still on Exemestane with no liver issues now.

That gradual rise of liver enzymes seems very familiar to me. It’s always frightening when something unexplained happens but it could be something or it could be nothing. By nothing I mean maybe your liver is opposed to the particular drug and stopping it is all that’s needed.

BritSammy profile image
BritSammy in reply toKerryd22

Hi Kerry, it’s so strange and just adds to an already stressful situation. Thank you for your reply.

Discocat profile image
Discocat

Hi

We are in a similar time frame with our diagnosis, age and meds...I had very high liver enzyme reaction to Kisqali, Letrozole and Zoladex with Monthly Zometa....at the start of my diagnosis in 2021. I was only on this combo for around 3mnths.

I was also taken off all meds to lighten any load on my liver. Enzymes were checked every week. Scans at this time showed no progression...infact my oncologist was happy to see some shrinkage of the primary that she took to be a positive sign that the medications were working...in her words "too much?!"

Anyway after a few months once the enzymes balanced out I restarted the Letrozole and Zoladex and was then switched to Ibrance. I remain on the same meds now...with the Zometa IV every 3mnths.

Scans after the switch in meds and the break when I was off all meds, showed no progression and further shrinkage of primary.

It's possible that you could still continue with one of the same cdk inhibitors...in your case Kisqali or Verzenio after your enzymes drop to within normal numbers.

Best wishes

Zoe xx

BritSammy profile image
BritSammy in reply toDiscocat

Hello Zoe

Very interesting!

Thank you so much for your reply gives me some hope x

Discocat profile image
Discocat in reply toBritSammy

Also...I'm sure your oncologist has given you some guide lines...but for your information...I was warned to not take any supplements, vitamins or over the counter medications...not even paracetamol...as all of these put some additional processes onto our liver function...drink lots of plain water and no alcohol at all.

BorisCarloff profile image
BorisCarloff

Hi Brit...DON'T WORRY. I was on Kisquali for one month which is almost a twin to Ibrance. Mine went up to over 350. I am being treated at Sloan Kettering in NYC was sent to a liver specialist there who simply did blood tests and after reading the results of the simple blood test he determined that my liver was fine that the Kisquali (in your case Ibrance) was the culprit and soon as I get off it it will come down. Sure enough, after a few weeks off of it came down to normal. He said "You have a healthy liver, the meds did this to you." I rested the meds for 6 weeks tried it again and in 4 days the enzymes went up again. So sadly, I cannot be on that classification of meds, which are supposed to be wonderful. I had no other side effects.

That classification of meds is KNOWN to raise liver enzymes. It is a well known side effect of Ibrance and Kisquali:((((( So, this is not un-expained. MSK sees this all the time. You still are on Fulvesterant so you are protected in some way right now...you are not naked. I was then off Kisquali for 3 months rest and was given afintor (which rarely affects the liver) BUT it was horrible for me as I had every side effect in the book:( So deep breath, that this is the drug raising the liver enzymes.

BritSammy profile image
BritSammy in reply toBorisCarloff

Thank you Boris 😀

The way these doctors act like your the first person to have this side effect when they know the raised enzymes are a possibility. Thank you for sharing your experience. X

BorisCarloff profile image
BorisCarloff in reply toBritSammy

Fatigue and liver enzymes were the first SE I was warned about. PS I was never tired:)

SpongebobMom profile image
SpongebobMom

anything new in your diet?

I had something similar happen, but my numbers were greater than the range numbers...needless to say my onc went into freak out mode for me...turns out it was due to me switching from regular coffee to a mushroom based coffee alternative. I only drank it for 30 days...I can't imagine what 30 more would have done to me.

Anyway, it could be something you're ingesting (not drugs related)

BritSammy profile image
BritSammy in reply toSpongebobMom

Hi SpongeBob 😀

I really cannot put a finger on what it is! I haven’t changed my diet to anything different. It’s so frustrating as I really would like to stay on this regime as I have minimal side effects. Thank you for taking the time to respond. X

oilermama profile image
oilermama

You betcha!! My liver enzymes are totally out of whack... I am on Ibrance and anastrazole and have been for seven years. In fact, today a PA told me that part of that could be related to my use of Tylenol. Who knew? So now I am not going to take Tylenol and am shifting to some other pain reliever. I also cannot take Norco because it contains Tylenol -- again, who knew??

The good news is that nothing has changed with my scans or blood work in seven years, so I guess I am feeling blessed even though the liver enzymes are crazy.

Best of luck to you!

BritSammy profile image
BritSammy in reply tooilermama

Wow! I really thought this was something unique and not related to the meds. Obviously I was wrong. Thank you for taking the time to respond. X

oilermama profile image
oilermama

and in addition, I have had fatty liver disease since before my diagnosis in 2017, so again, go figure...

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