ALT climbing…: Stopped ibrutinib 22/5/24 - in... - CLL Support

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ALT climbing…

catnapcrew profile image
7 Replies

Stopped ibrutinib 22/5/24 - in remission (was on captivate trial). My ALT has always been around 20 - normal range. Latest bloods 59. Anyone have any ideas if relevant to cll or just stopping ibrutinib? Don’t see Doc until Xmas. Thanks

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catnapcrew
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jorum profile image
jorum

Hi CNC

Text book says possible causes include glandular fever, alcoholism(!), kidney infection, or heart attack. However, my ALT made it up to 80 due to none of the above; once whilst on Rituximab and second time on mycophenolate. Can you phone or email doc in the interim to make sure they have seen it?

Jorum

catnapcrew profile image
catnapcrew in reply tojorum

Good to hear from you. Don’t believe I’ve any of the above. Ok yours went up a lot higher - while on drugs makes sense with pressure on the liver. Weird mines gone up immediately after stopping drugs. I’ve since checked results last 8 years on venetoclax and Ibrutinib and never raised ALT. Just had phone appt with new (off trial) haematologist hence the blood test - he said my blood’s normal no mention of this chemistry result so I’m not overly concerned more curious as the timing doesn’t make sense unless ibrutinib was “masking” any issues but that doesn’t make sense either and not something I’ve heard about. Didn’t get to see results until a week after appt. Guess I’ll wait for next test and see what the go is then. Cheers hope you are keeping well.

BigfootT profile image
BigfootT in reply tocatnapcrew

Can't speak to your treatment specific question, but when I was recovering from COVID in May 2020 after a week of hospitalization my ALT was in the high 50's. At my post recovery appointment my doctor said my blood work looked good except my ALT. He added, "your livers been through a lot and it will take time to heal." He expected 6 months. I recall getting back in the 20s in about 4 months. I suspect your liver worked hard during treatment and it may just be taking some time to heal, but that's just my guess.

Bigfoot

catnapcrew profile image
catnapcrew in reply toBigfootT

Thank for sharing. Yes I wouldn’t have been surprised if it started climbing during 8 years of treatment- weird it’s started when treatment stopped. And I’ve not recently had covid or flu or anything but that’s an interesting observation

LeoPa profile image
LeoPa

Do you consume much fructose at all?

Skyshark profile image
Skyshark

CAPTIVATE MRD, half the patients that reached uMRD4 continued on Ibrutinib, the other half got a placebo. Those that didn't achieve uMRD4 were randomised between continuing V+I or just Ibr.

ascopubs.org/doi/10.1200/JC...

Have they actually confirmed that you got Ibrutinib and not the placebo?

The above report shows that for the first year patients getting the placebo continued to report AEs!

catnapcrew profile image
catnapcrew in reply toSkyshark

Yes I had ibrutinib. Never had raised ALT for the whole trial. I was then put on another trial for a year to continue on ibrutinib. After 4 months my platelets are normal for first time. WCC was mostly in normal range the last 18months. My nausea and mild fatigue have all disappeared. I’m about 4 months off ibrutinib and this is first time raised ALT (treble what it normally is). Be interesting to see next bloods - hopefully just a blip.

Thanks

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