How are people with liver mets doing?

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  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited July 2021

    Sac321, here is a link to the clinical trials thread. You'll probably want to post there as well.

    https://community.breastcancer.org/forum/8/topics/868597?page=68#idx_2031


  • sac321
    sac321 Member Posts: 8
    edited July 2021

    Thank you ShetlandPony. I am aware that there is a clinical trials thread, and was going to cross-post it there:-) One of the reasons I posted the info here is that I thought some of the liver met group may want to look into the trial (not necessarily meaning going for it). My MO framed the trial in this way: when you run of chemo options very quickly and have a liver tumor to kill or stop growth, that's one option. Thanks again

  • moth
    moth Member Posts: 3,293
    edited July 2021

    New article about pseudocirrhosis in metastatic breast.cancer https://www.frontiersin.org/articles/10.3389/fonc....

    Not particularly encouraging tbh, and limited management options

  • [Deleted User]
    [Deleted User] Member Posts: 760
    edited July 2021

    sac321

    Your trial option sounds interesting. I hope it is something helpful.

    I have a similar treatment in my back pocket for my neuroedocrine feature. 177Lu-DOTA0-Tyr3-Octreotate (177Lu-DOTATATE, Lutathera®) which is a Peptide Receptor Radionuclide Therapy(PRRT). I like to think of it as targeted radiation in an IV

    I had a dotatate scan and my tumors express somatistatin. My chromagranin numbers are off the chart.

    I responded well to y-90 and SBRT so PRRT is a potential therapy for me. It has a risk of leukemia, so I am going to ride the endocrine therapy as long as it is working.

    Dee

  • B-A-P
    B-A-P Member Posts: 409
    edited July 2021

    Moth,

    That has put my anxiety levels through the roof. I'm trying to remember that my oncologist doesn't seem too concerned with it at this point .. but perhaps it's because so little is known about it. I'm so frustrated and discouraged.

  • husband11
    husband11 Member Posts: 1,287
    edited July 2021

    In that study of psuedocirrhosis, 49% of the patients had 1 or more sign of hepatocellular failure.

    Although my wife has extensive pseudocirrhosis, her liver is functioning fine. All liver values are within normal range, or only slightly outside of normal range. It is not impairing her treatment, nor her health. BAP, from what I understand, you are in the same category.

    Conclusions: In this largest series, to date, of breast cancer with pseudocirrhosis, the latter was often complicated by portal hypertension and hepatocellular failure, and markedly impacted breast cancer management. Survival was shorter for patients who developed hepatocellular failure.


  • B-A-P
    B-A-P Member Posts: 409
    edited July 2021

    Thanks again Husband for being the voice of reason. Really I appreciate it.

    My Report also Showed some atrophy in segments 2 and 3 but as far as I know my liver function is fine. I get bloodwork done in 3 weeks before my zomea infusion

    Just for reference it says " Left portal vein decreased in size however remains patent. There is altered perfusion within these segments ( 2 and 3). No discrete mass can be detected, these findings can be seen post chemotherapy in a patient with metastatic disease to the liver, Known as pseudocirrhosis. There is atrophy of segments 2 and 3.


    I'm in panic mode lately which is not usual for me. I'm usually a lot more rational than this

  • Hopfull2
    Hopfull2 Member Posts: 287
    edited July 2021

    Hi everyone, I’m new to this board. I have bone Mets. Have scans every 3 months. Had CTscan last week and it shows lesions to my liver. Report reads , new I’ll defined low density lesions within segment 8 measuring 1.5cm & .6 cm in diameter suspected to represent new hepatic metastasis. I’ve posted this on 2 other boards, bone and verzenio board. Sorry for posting again. I feel this board is very knowledgeable to liver Mets info and treatments. Next step is a PET scan that MO ordered. To be sure it is Mets. He is not doing a biopsy, he states they are very small and does not want to put my body through that. So he’s taking me off Verzenio for now so that my counts go up to start new treatment. He’s thinking of Xeloda,, Just wanted to see if anyone has any other tips or advice. I’m still on letrezole/zolidex/Zometa. Been off Verzenio only for 2 days. Thanks,,hugs.

  • [Deleted User]
    [Deleted User] Member Posts: 760
    edited July 2021

    Hopfull2

    Welcome to this great group who support and share experience.

    Hopefully the PET will rule out liver mets.

    If it is unfortunately liver mets and your bone mets are stable, they may consider it oligometastatic progression and pursue a local treatment such at SBRT or y-90 to the liver.

    I myself had liver mets with a new small lung met that lit up on a PET scan. I had SBRT to the lung and it worked on the lung met. No new lung mets in a year!

    As far as next systemic you have good ideas. we have heard of others who have swapped cdk 4/6 with success. If it were me, I would also consider targeted endocrine combo (afinitor & faslodex) before chemo.

    Hoping for the best!

    Dee

  • Hopfull2
    Hopfull2 Member Posts: 287
    edited July 2021

    Alabamadee,, thank you. I’m going to suggest this to MO. I didn’t realize Xoleda was more of a chemo than a targeted therapy. Uhhhh. I’m afraid of chemo. I read SE on Xeloda. Some stuff with feet n hands blistering. I’m going to as MO about sugestión u gave. Also. If I’m on Verzenio & letrezole. I’m wondering if we swap the Letrezole for another AI. May re it’s the letrezole not doing it’s job. Idk a lot about this and reading all the stuff is overwhelming.

  • Grannax2
    Grannax2 Member Posts: 2,387
    edited July 2021

    I got the results of my PET and MRI on Tuesday. Not good. Navelbine failed. Multiple new and enlarged lesions in my liver. Ugh. In my lung there are one or two new ones and the rest are stable.

    I don’t know what’s next. I see my MO on July 8. She did mention Exempra. I don’t know anything about it. Im going to gather information about it on Thursday but I’m not going to make a decision that day. My son will be on vacation and I want to wait till he gets back.

    The decision will be difficult because I’m not sure I want to continue with another chemo or stop treatments. The last one was really hard on me and I had to miss out on a lot of things I wanted to do. The chances of another chemo working is very small, even less of a chance than the last one.

    So, that’s where I am right now

  • HopeandGratitude
    HopeandGratitude Member Posts: 520
    edited July 2021

    Grannax. I am sorry you are in such a tough place right now. Maybe Exempra will have less side effects and more hope. I respect and support any of your decisions. But my hope and prayers is that you, and so many of us have long lives with good QoL and who knows, maybe a few get cured.

  • Rosie24
    Rosie24 Member Posts: 1,026
    edited July 2021

    Grannax, I’m sorry to hear your current treatment didn’t work. It’s hard to hear that the next chemo doesn’t have a great chance of working either. I hope as you consider what to do, you come to a decision you have peace with. 🌻

  • candy-678
    candy-678 Member Posts: 4,166
    edited July 2021

    Oh Grannax I hate to hear this. I mentioned your name on another Thread, and that you were having scans soon. I am so sorry. Hugs.

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited July 2021

    Grannex- hugs. I support you. I have been in so many situations where I was on my last leg of treatment. I know what it feels like to not have many options. May you be able to find peace with whatever decision you mak

  • nicolerod
    nicolerod Member Posts: 2,877
    edited July 2021

    Grannax so sorry to hear this. How long have you had Stage 4? I don't see any info in your profile...

  • Kattysmith
    Kattysmith Member Posts: 688
    edited July 2021

    Grannax, I'm holding you in my heart. This is a tough summer. Peace and comfort be with you.

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited July 2021

    You are in my thoughts Grannax. It’s such a difficult place to be. I wish you peace with whatever you decide to do. Hugs.

  • theresa45
    theresa45 Member Posts: 238
    edited July 2021

    Oh Grannax, I'm so sorry that you are facing such a difficult decision! I'll be praying for peace and that you will have many more good days with the family that you love so much. Hugs and prayers! Theresa

  • BevJen
    BevJen Member Posts: 2,341
    edited July 2021

    Grannax,

    Holding you in my heart. Prayers that you come to the right decision.

  • Hopfull2
    Hopfull2 Member Posts: 287
    edited July 2021

    Grannax,, hugs from a far. This just sucks. Makes me so mad. We need a cure.

  • [Deleted User]
    [Deleted User] Member Posts: 760
    edited July 2021

    Grannax,

    You are brave and persevering! I care and hope you enjoy your summer. 🙏🏻

    Dee

  • buttonsmachine
    buttonsmachine Member Posts: 339
    edited July 2021

    ((Hugs)) Grannax. It's really scary and discouraging when treatments don't work. I hope there is another good option for you.

    Hopfull2, Xeloda can be very tolerable. I found it to be more tolerable than some hormone therapies actually. I know everyone is different, but I was on Xeloda for over six months and was doing great! I was hiking, living life, everything. I usually have a hard time with chemo, but not Xeloda. It is not really a typical "chemo" at all. Just my experience. Best wishes.

  • susaninsf
    susaninsf Member Posts: 1,099
    edited July 2021

    Scans on Friday showed stability so Verzenio must be working! Subcapsular liver tumor that I'm still not certain is cancer changed shape but not volume, 1.8 x 1.1 cm previously 2.4 x 0.8 cm. Anyone else see this kind of shape change in a liver tumor?

    Hugs, Susan

  • elderberry
    elderberry Member Posts: 1,067
    edited July 2021

    moth: catching up on the boards. I am so happy for you and the stable news. May it continue for a long long time.

  • elderberry
    elderberry Member Posts: 1,067
    edited July 2021

    Grannax: I am so very sorry about your current condition. I hope you find comfort, peace in whatever your decide to do. You have been such a rock on these boards. Hugs

  • Jjzn
    Jjzn Member Posts: 114
    edited July 2021

    I apologize in advance if I shouldn't post this here. This sight just seems so knowledgeable.

    I am currently on halvan and am thinking of requesting to stop it due to side effects. I originally requested my next drug to be trodelvy. But now I am thinking I would like to give chemo a rest and try something else. I have liver Mets and bone Mets. My question is what are my non chemo options? I have done fluvestrant and verzenio,xeloda,gemzar, taxol. Taxol is the only one that worked for four months. I do have the fgfr2 amplification. I do not have pik3.

    Do I have any non chemo options?

    Thank you

    Julie

  • s3k5
    s3k5 Member Posts: 411
    edited July 2021

    Jjzn , you are welcome to post here. Ibrance + Faslodex was my first treatment when diagnosed with bone mets only, and then I was on Verzenio. In your case, I don't see you had any Ibrance. Even though Verzenio and Ibrance are CDK inhibitors, my MO thought one might work better than the other one. Last year, I was on CMF which shrunk my liver mets within 4 months. Later I was on Letrozole only which kept my liver and bone mets stable for 6 months. So it seems like Letrozole and Ibrance may be an option for you to try. Your MO may have other non-chemo options that you haven't tried yet. Have you discussed your concerns with your doctor?

    Is it possible to reduce the dose of Halaven to minimize your side effects? Please discuss your side effects with your MO, who can give you something to deal with your side effects. All the best.

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited July 2021

    Hi Jjzn,

    You have also not been on Exemestane which is the steroid version of Femara/Arimidex. Often it is coupled with Everolimus (Afinitor) but I understand that can be a harsh treatment.

  • Jjzn
    Jjzn Member Posts: 114
    edited July 2021

    S3K5 and Sadiesservant

    Thank you for your responses. I am going to discuss with my MO but wanted some ideas to throw at her including a dose reduction. She did give me anti nasuea medicine but it puts me to sleep for the whole day so not worth taking.

    What is CMF?

    Thanks

    Julie