Liver damage with Tamoxifen?

Hey, peeps.

Context: A little over a year ago, shortly before my BC diagnosis, I had skyrocketing ALT and AST levels and was sent for a liver biopsy. I was diagnosed with liver damage of unknown origin (they theorized I'd been exposed to something chemical somehow), NASH and NAFLD. I had mild scarring on my liver and lots of fat in there. I started making changes right away, particularly to diet and exercise.

So here we are a year later, and I've worked really hard on my diet and exercise, and I was really hoping I'd walk into the liver center and they'd say, "Your numbers look great! Keep up the good work!"

Instead, what they said was, "The good news is that most of your numbers are good and the fat in your liver has gone down. The bad news is your ALT and AST are still high, and the amount of scarring on your liver has gone from mild to moderate." (From a 5 to an 8 for anyone who knows the score.)

They ALSO said that in a limited number of patients, Tamoxifen has been known to cause liver damage. They want to see me back in six months and will want to do a biopsy if things haven't improved.

Y'all. I'm sitting here staring at my Tamoxifen pill thinking, "Do I really want to take this every day for six months if it's going to make my liver worse?" I'm literally struggling to take it. Because breast cancer has been no fun, but needing a new liver might be worse. There's gotta be a faster way to figure out if it's contributing to my liver scarring, right?

Has anyone else had this issue?

-saltmarsh

Comments

  • bcincolorado
    bcincolorado Member Posts: 5,758
    edited January 2022

    Alll medicine is filtered through your liver. My husband had a liver transplant so I know a lot about what affects it. This should not affect your AST and ALT numbers, If your bilirubin is bad as well and other numbers you need to make sure to talk to your doctor before stopping any medication or changing anything.

    Exercize and diet does help. Even in the house exercize works in the winter months. We do low fat, low catb and low sodium all the time at our house now and are used to it at this point. Best wishes.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited January 2022

    saltmarsh - there is a member canadaliz who had severe issues with Tamoxifen and her liver - here is a link to her post. Might be worth a PM to her to get more insight. The post is 9/17 at 11:06am, top of page 2.

    https://community.breastcancer.org/forum/78/topics/880889?page=2#post_5699959

  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited January 2022

    I stopped Tamoxifen because I developed a fatty liver, and found some information showing that it was a cause. Because I had kidney cancer and a nephrectomy, I rely on Tylenol to help with my arthritis - and that can be rough on the liver, too. I felt I had to make a choice between a possible recurrence or spread of BC, or the arthritis that is already affecting my life. Tylenol won.

    https://www.sciencedirect.com/science/article/pii/S092966461500176X

  • saltmarsh
    saltmarsh Member Posts: 227
    edited January 2022

    Thank you, bcincolorado, SpecialK and alicebastable! I guess the part of me that didn't want to acknowledge the long haul got a little rattled. I appreciate your input!

  • bcincolorado
    bcincolorado Member Posts: 5,758
    edited January 2022

    Hang in there and talk to your doc about your concerns. They may have ideas or change up your medication f it is an issue for you as well. There are other options as well. Best wishes to you.

  • nem126
    nem126 Member Posts: 109
    edited January 2022

    I've had slightly abnormal test values pertaining to my liver too. "Fatty liver." I don't drink or smoke. Exercise daily, keep my weight in check. So ya, it's the tamoxifen for me. Squeeked through 4 years of it and I'm stopping soon.

  • saltmarsh
    saltmarsh Member Posts: 227
    edited January 2022

    nem, I like your signature line. And, I'm sorry to hear this. It's awesome that you are nearing the end of needing to take it. If you think of it later, I hope you will send an update after you've stopped the Tamoxifen and let us know if this goes away or at least becomes less of a problem for you!

  • Cowboy-Up
    Cowboy-Up Member Posts: 211
    edited January 2022

    This has been my life for the last year. Started out with high levels of ALT and AST. My oncologist ordere a CT scan and noticed my liver was enlarged. I was sent to a hepatologist that ran a special liver ultrasound on me. Moderate scarring and extreme amount of fat. He told me I needed to get off the Tamoxifen. I tried 2 different injections to stop my ovaries and had issues with each. In November I had my ovaries taken out and I just started Letrosole. I also had another ultrasound in December and the scarring is doing much better but the fat only improved a little. I changed a lot in my eating habits I’m hoping more changes and time can heal my liver more.

  • saltmarsh
    saltmarsh Member Posts: 227
    edited January 2022

    Hmm. Cowboy-Up (great name!), that does sound similar. I wonder if stopping/removing my ovaries would be something my docs would consider. Do you have any idea if you have an alpha 1 antitrypsin deficiency? Turns out, I do, and I wonder if that is a contributing factor to people responding differently to Tamoxifen.

    I do find it encouraging that your scarring improved! One of my fears has been that mine will just get worse and worse. And considering I've been on Tamoxifen less than a year and have already jumped up a level of fibrosis, that's not very reassuring. But maybe it's not as inevitable as I've been imagining!


  • Whatjusthappened
    Whatjusthappened Member Posts: 283
    edited March 2022

    Hey all, for those of you who developed fatty liver due to Tamoxifen, how far into the treatment course did it take for it to show up? I started Tamoxifen in Jan. after not being able to tolerate aromatase inhibitors, and have been tolerating the Tamoxifen better. However,I just had a chest CT from my pulmonologist that showed what was consistant with a fatty liver. I have gotten quite a few chest CT's over the past few years, and this has never been noted before. I'm concerned that if it is the Tamoxifen, that it seems to be affecting my liver pretty quickly. I do have some comorbid conditions that may put me at a higher risk, but I don't drink and I don't smoke. I feel like I can't win with these meds!

  • MaleBreastC
    MaleBreastC Member Posts: 65
    edited March 2022

    Hi

    I was taking Tamoxifen for 14 years, I had grade 1 fatty liver at the beginning of the treatment which did not worsen in 14 years.. Hope this help

  • Cowboy-Up
    Cowboy-Up Member Posts: 211
    edited March 2022

    My liver problems showed up close to 4 years on Tambut as bad as mine was and still is, this could have been going on for awhile.

  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited March 2022

    I think my fatty liver showed up at around 9 months. I was getting scans every 3-4 months after my nephrectomy, and it wasn't noted on the earlier ones.

  • Whatjusthappened
    Whatjusthappened Member Posts: 283
    edited March 2022

    Thank you for your replies. It sounds like there is a pretty wide range. I guess I'll send the report to my MO and get his take on it.



  • saltmarsh
    saltmarsh Member Posts: 227
    edited August 2022

    So, even though I've worked extremely hard to get my diet and exercise in order, and have decreased the fattiness of my liver significantly, it has continued to become stiffer. In a year, it's gone from low-level stiffness to stiffness normally associated with cirrhosis. My hepatologist thought they must have gotten my last scan wrong somehow or that it was messed up by my having had Covid shortly beforehand, so they redid the scan and all my bloodwork earlier this week. But the scan came out nearly identical and the labs didn't look good either. So they did another liver biopsy today, hoping to rule Tamoxifen either in or out as a culprit, and look for anything else that gives us clues about what's going on with my liver. I should have results between one and two weeks from now.

  • Rah2464
    Rah2464 Member Posts: 1,647
    edited August 2022

    Saltmarsh sorry to hear your liver scarring or stiffening has increased. I hope this biopsy gives you information to address the issue.

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