Progression to liver :(

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Laurie09
Laurie09 Member Posts: 313

Hello folks,

Just got my most recent scans, and after 2 years of diffuse bone mets with stable results, I am having progression of my bone lesions and multiple liver nodules that they think are mets. :(

It's hard not to go to very dark places and it feels like the beginning of the end. I'm ER+. Anyone have any words of hope for me? I should add that I've only had Femara, Ibrance and Xgeva for treatment (currently on this combo). And Oophorectomy.

I only have the electronic scan results and haven't talked to my Dr. yet which I plan to do tomorrow.

Comments

  • cling
    cling Member Posts: 333
    edited May 2017

    Laurie, I fully understand your feeling now. After a long period calm, "progression" is like the first time hearing "you have BC!"

    If you are still ER+, and have not gone thru AIs, there are many old and new or combination horemonal treatments. Check out Faslodex (kept me stable for over 3 years), ibrance, ......and other threads and combination threads. There are many new ways to treat ER + patients. Hug to you.

  • Kandy
    Kandy Member Posts: 1,461
    edited May 2017

    Progression, such a dirty word, yuck. I was in the same place as you last year. I had bone mets that had stayed stable for 3 years. Then all of a sudden bam, progression in bone mets and it crossed over to the liver. I also had, and still do, the feeling of the beginning of the end. I went through several drugs with nothing stopping the progression. In January we switched to chemo. Finally 2 weeks ago we reached stable status. Psychologically it's hard. But I keep reading on this forum that there are many ladies that do well even with liver mets. I'm hoping that once you find something that stops progression, you will feel better too. It's funny to me how the brain works, somehow you accept and adjust and continue on with your life. I wish you the best. Try to enjoy the moment

  • 50sgirl
    50sgirl Member Posts: 2,527
    edited May 2017

    Laurie, I started with bone-only mets, too. I had convinced myself that I was in a safety zone and that nothing would happen to me as long as the mets stayed in my bones. Last June, my scans revealed the unthinkable. Not only did I have progression in my bones, I also had three lesions in my liver, and they were mets! They varied in size from 1.2 cm to 2.1 cm. I felt like I had fallen through my safety net and was free-falling off into some scary world where my time would be measured in weeks or months rather than years. My husband and I had a good cry together and decided to forge ahead into what ever we had facing us. When we met with my MO and I told him how I felt, he took a deep breath, reached for my hand, and told me that my liver mets were relatively small (using his fingers to show me how small), that I was not feeling sick, and that liver mets can often be controlled for a long time. We discussed several possible treatment plans, and he told me why he recommended one over the others. I had done some research and was happy with his recommendation. Last December, my scans show stable bone mets, and my liver mets were much less visible. I am due for another scan next week, and I except the good news to continue. I still feel great. I know how difficult it is to come face to face with progression, but there are still many treatment options available to you. Remember that we are all here to support you. Many people on these boards have been living many years since their liver mets diagnosis. I will be thinking about you tomorrow as you go to your appointment.

    Big hugs from, Lynne


  • pajim
    pajim Member Posts: 2,785
    edited May 2017

    Laurie, the first progression is such a shock. When after two and a half years I went from nothing to something it was so distressing. I'd convinced myself that nothing was ever going to happen. But when we switched treatments and my tumor markers headed back down I felt better.

    I wish I could tell you that each subsequent progression gets easier but actually it doesn't. I'll probably freak out again when I get met somewhere not the bones.

    Meantime you should look into Faslodex, or there's a clinical trial of a Faslodex analog plus an Ibrance analog.

    Many many hugs. It's totally normal to get scared. You'll get through this. If it helps I decided a long time ago that I wouldn't start thinking "this is the end" until they put in a port and I start chemo. When that day comes I'll find some other point in the future before which I'll think "we're moving towards the end".

    Can you tell I spend a lot of time cruising the Nile? Not talking myself out of it either.

  • DaughterOfStageIV
    DaughterOfStageIV Member Posts: 49
    edited May 2017

    Hi Laurie,

    Progression is so scary- sorry this hit you. My mom also had progression to the liver this year after having bone only mets for 4 years. What a shock!

    We also thought it was the end and our thoughts went in the same direction. She went from bone only to at least 7 liver lesions (looked like more but they were able to clearly identify 7). We weren't eligible for any targeted liver treatments because she had too many lesions- we were really getting scared. There is a thread on liver treatments on this site with more info. Perhaps you will be eligible for some.

    My mom started eribulin (halavan) and it has been a miracle drug. She has been on it for a few months and none of the liver lesions showed on her recent pet scan! Her tumor markers also dropped to almost normal range from being quite elevated.

    So there are options and there aremany drugs that are still available. Let me know if you have any questions. Best of luck.



  • Laurie09
    Laurie09 Member Posts: 313
    edited May 2017

    Thank you everyone. Your messages are helpful and comforting. I am feeling a bit more hopeful this morning.

    Just talked with my Dr. She's amazing. She said she would like to biopsy the liver lesions, but they're relatively small so she's not even sure we can get tissue. She didn't sound overly alarmed and said that we will probably switch to Faslodex. I forgot to ask some of my questions, but I have my regular appointment with her on Friday so I can ask then. I still feel better though after talking with her.

    As many of you said, hard not to have a hard time with the progression, but I am feeling better today. I suspect the next progression will be hard too. Something to look forward to, LOL.

  • artistatheart
    artistatheart Member Posts: 2,176
    edited May 2017

    Laurie, I think I tell myself every time a new situation arises, that it is the beginning of the end. A good example is this weekend, I woke up with a horrible backache and feeling very bloated/crampy. After a brief stint of being upset and thinking I was going to the ER, I realized I had spent the whole day Sunday landscaping our yard, carrying heavy stuff and sitting on the ground. So I did the things you would do for backaches and constipation and am feeling 100% better. I have heard progression, then things stabilize and like pajim I return to the land of denial. As Lynne said, there are many woman who go for years with liver mets and I just pin my hopes on being one of them.

  • SchnauzerMom
    SchnauzerMom Member Posts: 374
    edited May 2017

    Laurie, I am so sorry that you have liver metastasis. Me, too, for nearly five years now. I thought time was far more limited when I first got the diagnosis, but here I am, and with a pretty good quality of life. I've had many lines of treatment, some worked, and more did not. It was always discouraging when a treatment was ineffective, and like all of us, I dread waiting for scan results and tumor markers. The tumors have never gone away, but blood work is always reasonably normal. Currently I'm on Halaven (past 6 months). My longest stretch of good response was with Doxil (20 months). I know we're all different in our responses to treatments--some promising ones didn't work for me, but others did.

    There is hope for more time.

    Wishing you well!




  • artistatheart
    artistatheart Member Posts: 2,176
    edited June 2017

    SchnauzerMom, I was very interested to see your post as we have a similar profile and it does me good to see you five years out with liver mets. Your words were very uplifting for me. Cheers to many more!

  • Laurie09
    Laurie09 Member Posts: 313
    edited June 2017

    ^What artist said, for me too. :)

    Thanks all.

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