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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: 4,696
    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: 9,221
    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: 1,934
    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: 192
    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: 4,696
    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: 37
    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: 192
    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: 161
    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: 192
    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: 178
    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: 89
    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: 161
    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: 1,934
    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: 178
    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: 192
    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: 1,192
    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.

  • saltmarsh
    saltmarsh Member Posts: 192
    edited October 2022

    So, here's my update:

    I stopped taking Tamoxifen three months ago. My ALT and AST have each dropped between 40-50 points, so they are still high (in the ~150 range when they should be in the ~40-50 range) but not as bad as before. My fibroscan shows a slight improvement of the stiffness of my liver.

    Do we know for sure it's the Tamoxifen? No. But my hepatologist is "pretty sure" and wants me to stay off of it.

    My oncologist's office -- who seemed so on top of things earlier in my treatment -- seem to be dropping balls and miscommunicating all of a sudden. Not sure what's going on there, but it's not great or confidence-inspiring.

    They want me to switch to Lupron and Letrazole but have thus far failed to give me concrete info on:

    1. Dosage and monitoring

    2. Chances of recurrence/mets if I do nothing vs. follow this treatment course.

    *eyeroll*

    I think I see where my mom started to lose faith in this system... I want to be a "good" patient, but when they are failing to give me basic information so I can make informed decisions, it makes me angry. I am starting to get the sneaking suspicion they feel like their job would be easier if I just did what they said without question. But I did that, and now I'm facing the very scary possibility of needing a liver transplant if we can't throw this ship into reverse fast enough. I need and deserve answers and I'm frustrated.

    If you read this far...thanks for listening to my rant. I hope all y'alls doctors' offices are behaving better than mine.


  • alicebastable
    alicebastable Member Posts: 1,934
    edited October 2022

    Saltmarsh, it's so frustrating that specialists can't seem to see beyond whatever body part they're treating. I stopped taking tamoxifen at about the 9 month point, and didn't go on one of the alternatives. So it's been about three and a half years without. I'm 72 and have had other cancers, and I have other medical issues. So I'm probably kind of fatalistic about my recurrence chances. I think if I were younger, I'd have gone with an AI once I stopped tamoxifen. I hope your liver continues to improve.

  • traveltext
    traveltext Member Posts: 1,051
    edited October 2022

    Well, joining the fatty liver discussion after an ultrasound diagnosis following an ALT/AST jump from 30 to 170 in four months. Tamoxifen appears to be a culprit (going on 8 years), but pinning it down to this is tricky because why the sudden steep rise in liver enzymes after all this time? GP is looking for answers, as am I.


  • alicebastable
    alicebastable Member Posts: 1,934
    edited November 2022

    Jeez, Travel text, that sucks. You also need the T-shirt I want to get that says "What fresh hell is this?"

  • saltmarsh
    saltmarsh Member Posts: 192
    edited November 2022

    Traveltext, I'm sorry you find yourself in the club. If it's the Tamoxifen, I wonder what kept the damage at bay before, or what is making you more susceptible now! It's hard for me to understand how so many of us are on these meds and they really do not seem to understand whether/why/how they impact us.

  • saltmarsh
    saltmarsh Member Posts: 192
    edited November 2022

    @Alicebastable: I love the idea of that t-shirt.

  • ML1209
    ML1209 Member Posts: 153
    edited November 2022

    Hi all - wanted to reach out and see if any of you have had similar experience with your fatty liver. I was actually diagnosed with fatty liver with my diagnosis of breast cancer. I already had NAFLD apparently. It was discovered on my initial CT scan to check for any mets, etc. My liver enzymes were elevated all during chemo. I also had pain (like a burning, pulled muscle pain) underneath my right rib page. MO ordered a liver ultrasound and everything was fine. Here I am 6 years later and still have wonky liver enzymes and this crazy pain. They switched me from tamoxifen to ansastrozole after only a few months as the whites of my eyes were jaundiced so I said I know this can't be a good sign. My provider felt strongly the tamoxifen was the cause. Liver enzymes improved some, but still elevated. My GI doctor feels it will always be this way because of chemo, etc. I just hit 5 years on anaztrozole, but testing indicates I need to continue to decrease my risk for recurrence. The pain under my right rib has been worse lately and sometimes radiates to the back and into my right shoulder and arm, so they were thinking gallbladder. Ultrasound shows that is ok - I guess I'm glad about that, but where is the pain coming from? They are going to do another ultrasound on the liver to check for scarring, etc. but ultrasound showed no concerns at this point. My lymphedema therapists feels the pain is related to the radiation and wants me to try PT. Just curious to see if anyone else had similar experiences. Thankful to be here, but trying to figure out these random pains and issues can be exhausting. I know you all get that.

    Thanks in advance for any input.

  • saltmarsh
    saltmarsh Member Posts: 192
    edited November 2022

    ml1209, for what it's worth, I also had pain under my right ribs for a long time. It would come and go, flaring up sometimes, and I never could figure out the cause, but as my ALT and AST got more elevated, it did flare more frequently. I also suspected gallbladder, as did my PCP, but scans showed my gallbladder as fine.

    When the doctors decided it was the tamoxifen, after all, making my liver worse and I stopped taking tamoxifen, I still had that pain. Then I started taking liver supplements -- because they couldn't offer me anything else, and I was in pain and scared and decided to trust my gut -- and that pain has stopped. I haven't had another flare under my ribs since I started taking them. In fact, after a week of taking them, I was in far less pain all over my ribs, and back, and realized I'd been living with chronic pain that had crept up on me for months -- maybe a year.

    Since stopping tamoxifen and starting supplements, my liver numbers are retreating in the right direction. Still in the hundreds instead of the 40-60 range, but at least they aren't up in the 200s anymore! The question now is whether the fibrosis is still progressing, which we'll know with time and testing.


  • traveltext
    traveltext Member Posts: 1,051
    edited November 2022

    AB. Put my name down for one of those t-shirts.

    ml. Thanks for sharing your “interesting” story. Lots to be learned from that, but I hope you can get that pain under control

    SB. Love it that you started this post and are keeping it rolling along. I’m hoping your numbers come down, too.

    My experiment continues. New bloods show liver numbers down from 170 to 130 after two weeks off statins and excluding my daily glass of wine. Next test is ditto protocol plus knock off the tamox. Will report the numbers in three weeks.




  • traveltext
    traveltext Member Posts: 1,051
    edited December 2022

    Report on enzyme numbers with no statins and no alcohol:

    Down from171 10 October to 115 on 31 October

    Up to 141 on 28 November

    Now going to try stopping tamoxifen.

  • meow13
    meow13 Member Posts: 1,363
    edited December 2022

    I also have a fatty liver my bilirubin was 2.9 liver enzymes elevated, so I stopped drinking wine, already do a low fat diet. Need to eat less and exercise lost a few pounds. Radiologist wants me to lose 20 pounds.

    There looks like an undetermined mass in the fundus of the gallbladder they want another ultrasound in 3 months.


    I have been off AI drugs for many years, never took tamoxifen. I don't take any Tylenol.

    My GP is not that concerned about the liver but is about my gallbladder. I feel fine no symptoms but thinking they should just yank the gallbladder out see if shows cancer in pathology.

  • traveltext
    traveltext Member Posts: 1,051

    Halved my daily tamox dose earlier this year. Going for new bloods next week. Will sport back on the ALT figures.