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Stage 4 - MBC long term survivor (3+ years)

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anx789
anx789 Member Posts: 232

Hi, I was recently diagnosed with stage 4 MBC. A friend of my friend has been living with MBC since 2012 (she’s been on clinical trial since 2012). This kind of story gives us hope, I would love to hear from anybody that’s been living with MBC for 3+ years. Please share your story with us


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  • illimae
    illimae Member Posts: 5,574
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    anx, next month will be 6 years for me (5 years last week with brain mets). I was diagnosed stage IV de novo within two weeks of finding the lump at age 41. I have a single bone met (hip) and did chemo, surgery and radiation due to being oligo metastatic (MDA treated me with “curative intent”due to minimal disease spread). I’m currently on my 3rd line of treatment and haven’t changed my lifestyle much but I do stay fairly active and eat well most of the time. Ultimately, I can only thank anti-HER2 meds and luck for doing well.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,755
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    My story is long and unusual, so I'll cut to the good part. I have a single bone met that was treated with rads. I have also been on all three AI's, currently Exemestane, I have had no progression in over 11 years. No idea why.

  • cowgal
    cowgal Member Posts: 625
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    exbrbxgrl - Reread your response. I think you left out "no" from your second to last sentence.

    I just hit 3 years with MBC in September. I was diagnosed 2010 with stage 2B breast cancer. Glad to answer any questions you might have but the short story is that my cancer came back in one lymph node and in my collarbone (over 7 cm in size). I was very fortunate to achieve NEAD by July of 2020 and so far have been able to stay at that status since (knocking on wood and thanking God).

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,755
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    Thanks cowgal! Though retired , I’m pretty much working full time for the month of October. Enjoying it but I am tired!

  • simone60
    simone60 Member Posts: 952
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    Hi anx, I was diagnosed with a recurrence in JAN 2019. I had recurrence in a lymph node near my collarbone, lesion in my hip bone and a couple in my sternum. I'm almost 4 years into this and still on my 1st line of treatment. I have been NED for 3 1\2 years.

    Your friend is doing very well. Do you know what trial drug she is taking?

  • amontro
    amontro Member Posts: 184
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    I was diagnosed from the get-go (denovo) 15 years ago with mets to my lung and spine. Following dx, I had a mastectomy, radiation, then chemo. I went for many other tests and it was also discovered that I have a crack in my spine among other things.

    At that time, I was told that I didn't have long to live and to get my affairs in order. I've already paid for my funeral and my cemetery plot. There is a gravestone with my name on it. I'm still on the same protocols since then, but 3 weeks apart.

    Since then, I have heard of many new treatments that were not available at the time. I feel like a dinosaur.

    If you are on a treatment that is not going well for you, I can only tell you that help may be just around the corner. You never know when there is a new discovery.

  • anx789
    anx789 Member Posts: 232
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    Illinae, exbrnxgrl, cowgal , simone - thanks for your reply.

    Simone: all she said was she had BC on 1999, met to duodenum in 2010, got surgery, then cancer topancreas and tip of her liver in 2012. Joined clinical trial in 2012. She's 76 year old and don't remember a lot, currently she's on Sandostatin trial in Cedar Sinai Hospital, CA, she's getting injections once a month. She also has thyroid cancer but only being observed- no treatment.

    She only do petscan every 5 years, they use MRI to monitor progression

  • olma61
    olma61 Member Posts: 1,016
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    I was diagnosed Stage IV de novo in September 2017 with numerous mets to spine, rib, and scapula. I was NED after my first six months of anti-HER2 treatment, then one of my spine mets became active again in 2019 and was treated with radiation. I have been NED ever since and am still on first line anti-HER2 treatment. Like Illimae, I give all the credit to my anti-HER2 drugs, plus my oncology team’s willingness to treat that “olio progression” in 2019 with radiation. But at teh time of my diagnosis I had been exercising and made positive changes in my diet and I do think that made me strong enough to get through the treatment with few side effects. Can’t say if it helped me get to NED or not, since I do think the drug protocol for HER2+ MBC is amazingly effective.

  • divinemrsm
    divinemrsm Member Posts: 6,006
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    anx, I found a lump in left breast December 2010 and within weeks learned it was stage iv with mets to several bones. My signature line shows the treatments I’ve had. I’ve had some years of stability and some times of failed treatment with progression and manage to live a full and meaningful life through the ups and downs. It’s a learning process and a lesson in perseverance. I am sorry you are now dealing with mbc and wish you all the best as you move forward. I hope you find the support you need here; I know do.


  • mara51506
    mara51506 Member Posts: 6,123
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    I have been 7+ years MBC. My MO said that I was stage IV from the start with cancer cells in the brain too small to see. I was officially dx'd Stage IV when the cells grew to be a 10 cm brain met 6 years ago in July.

    I have been NED from the neck down and I do credit Herceptin as well for keeping me that way for almost 7 years as well. My brain is stable as well, whole brain radiation in 2016 and a local treatment 2018. I am oligometastatic as well, only had the mets in one area of my brain thus far.

  • kbl
    kbl Member Posts: 2,682
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    I was diagnosed de novo in 2019, but, as many know, it was a missed diagnosis for six years before, so it was technically found in 2013. It was widespread and diffuse in all bone and bone marrow in 2013, so I would say it’s been circulating throughout for many years prior without my knowledge. It’s never been found in my breasts. It spread to my stomach before we knew what it was. I’m on my second line of treatment.

  • jsniffs
    jsniffs Member Posts: 136
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    Hi anx - I was originally diagnosed Stage 3 while pregnant almost 7 years ago (although I should have been diagnosed 1.5 years prior to that due to a misdiagnosis). I was diagnosed with a met to my spine about 4 years ago, and I had some additional progression to my spine and possibly hip over a year ago. I'm still working, and I try to focus on getting a little bit stronger and healthier each day. There are a lot of inspiring people on this thread, and advances in science are a good reason to be hopeful. Sorry that you find yourself here. Best wishes.

  • anx789
    anx789 Member Posts: 232
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    kbl, jsniffs - thank you. I think I was misdiagnosed for met 2 years ago, too. My lower leg issue started 2 years ago but my Onco and pcp downplayed it, I had mri done “suspicious of breast met”, they still downplayed it as osteomyelitis. Ortho Onco decided to do open bone biopsy because it was “very unlikely met” due to location. I hope ortho Onco did not spread it more by doing the open bone biopsy because he took approx 5 cm x 1 cm x .3 cm bone sample.

  • lovelife49
    lovelife49 Member Posts: 26
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    I was diagnosed with one small bone met a little over seven years ago, after having about a 4-1/2-year reprieve from my original stage IIIA diagnosis in 2010. I really thought I was a goner. Looking back, I am so annoyed at myself for writing myself off. I remember exbrxgrl's posts back then and thinking, wow, four years, five years, six years, etc., and thinking "what a unicorn." I never dreamed I would end up being just like her and now have a tiny bit of hope that I will continue to be like her. There is a large stroke of luck in all of this, though. I don't think I've done anything special other than take my letrozole every day and show up for my Zoladex shots monthly. I also had radiation at the site in 2015. I still wait for the other shoe to drop, but it doesn't consume me quite like it did in the first few years.

    All the best to you.

  • anx789
    anx789 Member Posts: 232
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    amontro, olma, divinemrsm, mara - thank you. I am very grateful to everyone for taking time to respond, sorry if I missed anyone. Tomorrow I will see my radiology onco and will find out if my cancer has spread to other body organs 🤞. Take care everybody

  • goldensrbest
    goldensrbest Member Posts: 650
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    I was dx MBC in July 2019 at age 64. Mets are in lungs, sternum, a couple ribs and one vertebrae. Been stable on Ibrance and anastrozole though my Ibrance has gone from 125mg to 100mg to 75 mg over the 3 years. I was originally dx stage 2 in 1989 at 34, and again in same breast in 1999 requiring a right mastectomy. My original MO surmised that because there was an almost 30 year span between original BC dx and MBC dx, hopefully the spread was very slow in growing and I should be stable for quite a while. I can only pray those thoughts are true

  • anx789
    anx789 Member Posts: 232
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    bad news today, I met my radiologist Onco today, mets are found in my lungs and widespread in skeletal system. His offering radiation for palliative care only. Chemo is on the table. I will see my main onco this Friday to discuss treatment, I also have a 2nd opinion appointment on 10/28.

    Goldenbest, did they do biopsy on your lungs

  • mara51506
    mara51506 Member Posts: 6,123
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    .


  • moderators
    moderators Posts: 7,918
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    Dear anx789,

    We are so sorry to hear of your recent diagnoses. We understand the challenging times you are facing and are here to support you. Please keep us updated after your second opinion appointment. We would also like to extend the invitation to join us for one of our MBC Zoom Meetups. The link is included below.

    Sending you positive vibes and warm hugs! Medicating

    The Mods

    VIRTUAL MEETUP | For those with a diagnosis of metastatic breast cancer (MBC; also called stage IV)?
    Register: Mondays at 2:00 PM EST, Tuesdays at 8:30 PM EST (NEW!), and Wednesdays at 4:00 PM EST

    VIRTUAL MEETUP | YOUNG (under 45) with metastatic breast cancer (MBC; also called stage IV)
    Register: Thursdays at 1:00 PM EST

    VIRTUAL MEETUP | Metastatic breast cancer caregivers
    Register: Tuesdays, Bi-weekly at 4:00 PM EST

  • goldensrbest
    goldensrbest Member Posts: 650
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    anx789 - the MBC dx was made from drainage of pleural effusion. My lung mets were too small to biopsy (there were multiple small ones on both sides). Thankfully they have not grown with treatment. I'm sorry about your dx, but encourage you to find out your options. This disease is typically not a one and done treatment. HUGS🤗🤗🤗🤗🤗


  • nkb
    nkb Member Posts: 1,561
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    And789- sorry to hear of your news- I hope that they find something that works really well. this is the worst time, new news and no plan yet.

    I was diagnosed in 2011- but, it was missed for years- never had an abnormal mammogram etc- finally did a bx of one of the many recurring lumps and was positive. DMX, chemo, rads and Arimidex and about 5 years later- extensive bone mets. I'm on my 4th treatment. ILC is often found much later due to not forming lumps until late. most of my nodes were already positive.

    keep us posted

  • anx789
    anx789 Member Posts: 232
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    Nkb, my bone met is all over, met is also in my lymph nodes inmy chest, and 1.7 cm solid nodules in my lungs. Am assuming I’ll do chemo because radiologist recommend chemo and last time I talk to MO, he mentioned chemo or faslodex. And I remember my previous MO two years ago, when I had a scare, he would recommend chemo even though I’m just 2 years out of chemo. How come you did not do chemo first?

    Things getting worst, now I have fibula bone fracture where the stupid doctor did an open bone biopsy. I feel like my prognosis just got worst.

  • mara51506
    mara51506 Member Posts: 6,123
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    anx, so sorry about your fractue, so tough with eveything happening at once. In your pocket as things develop for you.

  • chicagoan
    chicagoan Member Posts: 963
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    Anx-Sorry to hear about your fibula fracture. I broke my fibula and tibia last March-it was traumatic for me but now I am back taking 8 mile hikes and playing pickleball. Do you need surgery for your leg or will you just have a cast. Can you bear weight?

    I am in my 7th year now. When I was diagnosed I was extremely sick with multiple bone mets throughout my body and pleural effusion. I was offered the choice of hormonal treatment only, hormonal plus Ibrance or chemo. I chose hormonal plus Ibrance and it has worked really well for me. Just so you know, hormonal driven MBC-long-term survival now is considered to be 10 years! So many of us are still newbies.

    Best wishes as you make your treatment decisions.

  • anx789
    anx789 Member Posts: 232
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    thank you Mara, it's just frustrating when mistake like this happens. I was reading my x-ray a week before the biopsy, “ no lytic or blastic process observed" so fracture must be from open biopsy.

    Chicagoan, I can bear weight but Im limping and walking slowly. I can not go down the stairs. Aside from fracture, there some soft tissue inflammation going on in my lower leg. With the presence of cancer in my fibula, will surgery or cast work? Did you get surgery

  • seeq
    seeq Member Posts: 1,084
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    Chicagoan- just curious where the 10 year survival came from. It's that bone only?

  • moderators
    moderators Posts: 7,918
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    anx789, we are so sorry to hear what you are going through! It's very important indeed for you to get a doctor you have confidence in, and who can help you understand what is going on and how to manage your fracture, as well as the other mets. We're here for you! Medicatingchicagoan, thank you for sharing your experience with your treatments.

  • chicagoan
    chicagoan Member Posts: 963
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    Anx-I had surgery which meant I had to be off Ibrance for about 6 weeks. I was able to stay on Letrozole. Surgery was recommended by my orthopedist. I could have just had a cast but the doctor did not recommend that. Since I live alone, I wanted to be weight bearing as soon as possible. If you haven't seen an orthopedist yet, I recommend you make an appt asap. In my case, I think I had stress fractures in the tibia. I complained of knee pain to my oncologist and she had x-rays taken but only of my knee. If the stress fractures had been identified earlier-which I think would have happened if I had gone to an orthopedist, I might have avoided the trauma of breaking both bones. Being on Letrozole so long, I think my bones have gotten a little brittle even with Xgeva. I am upping my calcium intake through food and learned after the fact that if you take calcium supplements at one time during the day, your body may not absorb all the calcium. I thought I was getting adequate calcium through the supplements but obviously wasn't. I also had been extremely active and probably put too much stress on my bones. Let us know how things go for you and what you decide.

    Seeq-I am basing the long-term definition on a study I applied for at the University of WI -Madison. This was some years ago-I just reapplied. I recall that definition in my letter of rejection. I don't think it had anything to do with bone only-it was the type of breast cancer. However, here is another link defining long-term survivors of MBC as being 9 years out. https://pubmed.ncbi.nlm.nih.gov/31055570/ To me these definitions are very encouraging.

  • nkb
    nkb Member Posts: 1,561
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    ANX789- I had chemo at diagnosis of IIIC since I had bilateral and multiple masses and lots of nodes and it being ILC they decided to go for the cure and do the chemo (not adjuvant) so not sure the chemo did anything. they did Bilateral mastectomy and bilateral axial node dissection first so knew my + nodes. after all those treatments it took about 5 years to get bone mets.

    So sorry about the fracture - what a nightmare.


  • anx789
    anx789 Member Posts: 232
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    I saw my ortho Onco today, fracture looks so bad in X-ray, cut my fibula into 2 and not align, biopsy caused the fracture because fracture is on the biopsy site, he’s not even apologetic. No treatment recommended, no surgery, no cast. Return to normal activities. He said it should heal by itself. Oh, he’s recommending radiation. What a joke!

    My concern is, I have bone marrow edema in my fibula, it’s full of fluid with cancer cell in it, now that it’s broken, I can only guess what happened with the fluid.