Fill Out Your Profile to share more about you. Learn more...
Webinar: Corrective Breast Reconstruction: Getting the Results You Want Join us July 9, 2024 at 6pm ET. Register here.

Anyone 5+ years with liver mets and ER+ Her2-?

Options
ShetlandPony
ShetlandPony Member Posts: 3,063

I just have to ask. If you had liver mets at diagnosis of mbc, and you are ER positive and Her2 negative, and have reached five years already, please raise your hand. Most of the 5+ years women I see here on BCO are either Her2+ (the Her2 drugs are quite successful), or they started with, and may still have, only bone mets. If I can hear from even one patient like me, it will be encouraging. I am coming up on four years now. It looks like I'm NEAD for the second time, so I am hopeful. But I would like to be able to say to myself, "If she can get there, so can I."

Edited to update: I've now survived five years and am working on six.

Edited to update 2020: Six years!

Edited to update 2021: Seven years. Currently NEAD for the third time. I'm not sure how! I've had four successful treatments and three that didn't work at all.

If I can get there so can you. May there be more and more of us.

«1345

Comments

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    Options

    I would like to know, too.

  • scoobie
    scoobie Member Posts: 11
    Options

    I had liver and lung mets at diagnosis with de novo MBC (ER+/PR+/Her2-) almost exactly five years ago. Also brain mets diagnosed 18 months ago but probably there from the start. I think disease rate of progression is probably more important than affected organs. The chemos tend to work very well for soft tissue organs (liver/lungs) whereas the hormonals work very well for bone mets. But we are all different!

  • nbnotes
    nbnotes Member Posts: 338
    Options

    I was stage IV de novo (ER+/PR+/HER2-) with 6-10 congruent liver tumors in all lobes with the largest being 5.6 cm. Original diagnosis was 7/17/12; so, I am coming up on 6 years this July. While I was stage IV from the beginning, we didn't realize it until after my BMX. I then did 6 rounds of AC, a hysterectomy, and started Arimidex. By end of April 2013, I was NED and got until Nov 2016 on that treatment. I've been on a couple since then, but only have 1 tumor in liver & some nearby lymph nodes. I still teach full-time at my college and adjunct at others along with trying to travel as much as possible. None of us have an expiration date or know what might be around the corner, but if you have gotten to NED again, you definitely have hope for several years.

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    Options

    I love hearing these stories. Thanks everyone.

  • JFL
    JFL Member Posts: 1,373
    Options

    Great thread. I have the same question.

  • JFL
    JFL Member Posts: 1,373
    Options

    And Shetland, congrats on being NEAD!!! Xeloda is super powerful. When I was taking it, I heard there was one woman on it 11 years and running.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    Options

    Thanks to all who have posted so far. Scoobie and nbnotes, I appreciate your sharing your encouraging stories. That just makes it easier for me to have hope. Interesting to see you were both de novo.

    Thanks, JFL. My oncologist keeps saying she hopes I will be one of those who can stay on Xeloda for years. She seems to think it possible.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    Options

    Anyone else ER+ Her2- with liver mets five years or longer?

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    Options

    I am going to bump this thread. Still hoping to hear from others.

    Maybe I will be the one reporting in 3 more years!! I feel there will be more of us as time goes on.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    Options

    Yes, SandiBeach, my onc would agree with you. Meet me here in three more years for a toast. In fact, everybody come. Perhaps I will have to be the first not de novo, 5+ years liver metster to report here (next year) and start a trend.

  • Vilma65
    Vilma65 Member Posts: 69
    Options

    bump

  • Bunsuela
    Bunsuela Member Posts: 3
    Options

    I was diagnosed with bone, lung, and liver mets in August, 2011. While I’ve been generally asymptomatic, I’ve also never been NED. It’s a challenging diagnosis, but not an automatic death sentence

  • LENAGREECE
    LENAGREECE Member Posts: 23
    Options

    Hello Ladies,

    So glad to see there is still hope . Here I am with liver mets after 3 cycles of Ibrance. I am terrified. The last week was a mess waiting for biopsy results. Inspiring to know that you women don't give up as I am very close to do.

    Starting chemotherapy trying to hide my situation from my kids who are in preparation for very important exams for college. I have worked very hard for these kids. Too bad I won't be here to celebrate their life.

    I don't dare to dream I will he here in 5 years, not even next year. You are wonderwomen

    God bless you all

    Lena

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    Options

    LenaGreece, I understand. Liver mets are scarey. This might not make sense, but I am at peace and enjoy my life more than before the metastatic cancer diagnosis, taking nothing for granted.

    I am here. The treatments are working and I live a great life.

    I wish that for all of us liver metsers.

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    Options

    Bunsuela! Oh my. You have had 10 plus treatments with hormonals. If you can do it, so can I.

    Thank you for posting.

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    Options

    Hi Shetland. We will get to our 5 year liver met anniversary, so have that wine glass ready.

    I completely understand that you need to take a break from bco. We are here if you need us. Keep dancing.

  • JFL
    JFL Member Posts: 1,373
    Options

    Shetland, I plan to join you at the 5-yr mark in Dec 2019! 3.5 down, 1.5 to go. Fasten your seat belts and enjoy the ride. I am hoping this Y90 will give me a “boost" in the mileage I have left. And Sandibeach and LenaGreece will be right behind me. Bunsuela, nearly 7 years is amazing. You are leading this train!

    Now that I am thinking about it, I started becoming very symptomatic in June 2014, so maybe June 2019 should be my 5-yr mark, just 1 year away. The doctors told me the symptoms were because I was “old” to be pregnant at 38 and brushed them off for 6 months, until my DH stepped in and ordered me some tests that ultimately diagnosed me.


  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    Options

    Lenagreece, dare to dream. I and many others are enjoying years of good life in spite of cancer treatment. And who knows what treatments may come along to help us in the future.

    Bunsuela, thank you so much for posting. You and I started the cancer game the same year, though my stage iv diagnosis came after three years.

    JFL, I am speechless and sad when I hear that you were brushed off like that. Yes, let's count on great results from Y90!

  • Sue2009
    Sue2009 Member Posts: 96
    Options

    Shetland , I am glad to read this post as I was told yesterday it looks like I have liver mets. I am in the hospital for sepsis. I have had a rough year, after Kandy passed, I avoided this web site. Our paths were too similar. So I had to come back to hear what is being said about liver mets & possible treatments. I am 10 years MBC w/bone mets Dx at get go. Appreciate encouragement like everyone else, I will be celebrating your 5 years with you. 💕 Sue.

  • candy-678
    candy-678 Member Posts: 4,128
    Options

    Just found this thread.

    I was diagnosed with liver and bone mets de novo---liver 8cm.  I only had 2 treatments of A/C IV chemo behind me when we found mets. We stopped IV chemo and started hormone/ targeted therapy.  My last CT showed the liver mets decreased to 10mm !!!!   Who knows what is in my future, but I hope to celebrate with you in 5 years !!!!!

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    Options

    Think I will buy my wine now so it can age and be ready in 4 years!

  • Lynne
    Lynne Member Posts: 368
    Options

    I am on 6 years MBC. It started in my spine and lungs. I think the liver started being involved after a year and a half. It's in plenty of other bones now too. I'm on my 6th treatment. My previous ones were Faslodex 1 1/2 yrs, Femara 3 months, Xeloda 2 1/2 years, Ibrance 6 months, Doxil 3 months, and now Taxotere 1 year. I had asked my oncologist, when I was first rediagnosed (I was stage 1 in 2005, it came back in 2012), what was the average life expectancy for stage 4. She said 2 years with only bone mets, a year and a half with organ involvement. In the next breath she said that she had 2 women 10 years out stage 4. I asked her at my last appointment if they were both still with us. She said one is (16 years!) and she has another patient 14 years out! There is always hope!! We are living with cancer NOT dying from!

    Hugs!

    Lynne


  • Mamita49
    Mamita49 Member Posts: 58
    Options

    6 years since MBC.

    10 Years since first diagnosis.

    Doing pretty well.

  • sydney2013
    sydney2013 Member Posts: 8
    Options

    Ladies,

    You just made my day so much better. After having a complete hysterectomy three weeks ago, I found out my ILC cancer is back. I too heard the 3-5 year survival statistics from two doctors. I believe in my heart with the right treatment/lifestyle changes I can live past that. However, today I am struggling with the odds. I needed your amazing stories today. Thank you all for bringing me back up by sharing and supporting.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    Options

    Best wishes to you Sue, candy, Lynne, Mamita, and sydney!

    I'm keeping this thread active in hopes of hearing from more women who have reached at least five years with metastatic breast cancer that was diagnosed as ER positive and Her2 negative, and whose first (or only) metastasis site is liver. I have found it much easier to find stories of longevity for those who started with bone mets, even if liver mets came later. And for those with liver mets who are Her2 positive, it seems the Her2 meds can be almost miraculous and last for many years. But I hadn't seen many like me, ER+ Her2- with liver mets at mbc diagnosis, who had reached five years yet, so that's why I started this thread. So far scoobie, nbnotes, and Bunsuela get the special gold pin. Thanks for showing us what is possible.

    Edited to ask Mamita, liver mets since 2012?

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    Options

    bump

  • Daniel86
    Daniel86 Member Posts: 207
    Options

    I posted this in another thread but just in case you don't come across it. It gave me hope

    https://cancerletter.com/articles/20180608_6/



  • MuddlingThrough
    MuddlingThrough Member Posts: 655
    Options

    Daniel86,

    Thank you for that link! I'm only a few months in but I hope they find many long-term survivors to participate. It already helps to know they exist but it's exciting to think what researchers could discover to help all of us.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    Options

    When I began reading the article, I was for a moment put off by the fact that the example of a long-term survivor was of a women with bone mets, not liver mets. But then the article went on to describe a study of "extreme survivors" of metastatic breast cancer. In an effort to identify what may help other patients, it will be looking at many things that might affect survival length, such as genetics, immune system, treatments and habits (diet, exercise, etc).

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    Options

    I am bumping this thread to see if anyone else can respond to question: ER+, HER2-, liver mets and 5+ years out from this diagnoses.

    I am now 22 months out from dx and could use the inspiration.