Autoimmune Hepatitis

jamiemarie

Hi all, first time posting, but I have been following the threads for awhile!

As way of background, I was diagnosed in December 2015 when I was 34, stage IV de novo with at least eight mets to my liver. I started anastrozole and lupron in February along with participating in the monaleesa-7 trial, which looks at ribociclib/placebo in pre-menopausal women. My first ct scan after two months showed partial remission and I have had two subsequent stable scans.

Unfortunately, in June, my AST/ALT levels started increasing. My oncologist suspected it was due to treatment, so he pulled me out of the trial in early July. I stopped anastrozole mid-July and have surgery to remove my ovaries scheduled this week so I can stop the lupron injections. Yet my AST/ALT continue to climb - almost 15x normal limits at this point!

So last week I had a liver biopsy and more tests and received the diagnosis of autoimmune hepatitis, possibly triggered by treatment, but no way to tell. So while my immune system has the right target in focusing on my liver, its killing off the healthy cells too! Figures Im starting daily doses of prednisone and azathioprine to suppress my immune system and inflammation and when/if my enzymes normalize I'll go back on anastrozole.

Im wondering if anyone else has been through similar and can give me any advice or what to expect? Right now it just feels like one more thing and its hard not to get depressed and frustrated!

Moderators

Jamiemarie-

Welcome to BCO! We're so sorry for this latest hurdle, we can imagine how frustrating this all is. We're sure some of our stage 4 community will chime in with their experiences soon; you should also check out the thread on Liver Mets in our stage 4 forum. Lots of great info there!

Good luck on your procedure this week, we'll be thinking of you!

The Mods

Longtermsurvivor

Hi Jamie Marie,

Welcome!

Sorry to hear about your hard new news.

Autoimmune hepatitis isn't something I've read about with any of the CDK 4/6 inhibitor drugs, but you might want to ask if others taking the more widely used palbociblib/Ibrance have had trouble with new autoimmune problems.

Sounds miserable and I hope it resolves.

warmly, Stephanie

Zillsnot4me

Getting my ovaries removed was the best thing. I wasn't nervous or scared. I was singing and dancing in the kitchen in the mornings.

Your ribociclib is a competitor of Ibrance?

I'm on Ibrance and Arimidex. I've had some bloating issues but gained 5 lbs on vacation. MO not worried but my AST/ALT are going up.

He sees wonky blood levels all the time so not worried but I am concerned when you pair bloating and abnormal bloodwork. It's so not me.However my scans are good so... I'm hoping it's the dead cells or stress that have it out of whack

I'm sorry you are going thru this but am interested in how you fare and if anyone else in same boat. Please keep in touch

jamiemarie

Thank you all for the sweet words, I really appreciate it!

Unfortunately my surgery today was postponed until next week- the doctors want to see my liver numbers improve before doing it now. I had labs earlier today, so fingers crossed the meds are doing their thing! The prednisone/azathioprine havent been much fun with some nausea and insomnia.

Zillsnot4me, yep ribociclib is potentially going to be a competitor of Ibrance. After my enzymes went up and I was pulled from the trial, my doctor got my protocol unblinded and I was receiving the ribociclib. It was a really easy regimen for me in terms of side effects and was also effective too, so was a bummer to come off. Since it now appears the elevated enzymes werent due to the meds, maybe that means I'll be able to take it again if it comes to market? My oncologist is thinking he'll add Ibrance to my arimidex, like you once I can restart meds again. I will be keeping my fingers crossed for you that your AST/ALT start coming down!