How long have you been Stage IV?

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  • creena
    creena Posts: 5

    Stage IV Since the Beginning in March 2024

    Mets in Lungs, Sternum and Spine

    Initial regimen was Abraxane with Keytruda and Zometa. Life altering side effects with Keytruda so now off it.

    All these long-time survivorships are VERY inspiring and encouraging!

  • creena
    creena Posts: 5

    @chicagoan - Thank you for your story because, so far, yours seems to be closest to my diagnosis. I am originally from Chicago and, boy, do I miss it! The hospitals are MUCH better up there than where I am now.

  • moderators
    moderators Posts: 8,910

    @ssales13 we're so sorry to hear what you are going through and as many have echoed, we are sorry that you are here but glad you found us. We hope you can find support through our community. We also have virtual meetups for MBC that meet 3 times a week, one meets tonight, you are welcome to come to one or all, whichever fits your schedule. Thinking of you ♥️

    https://www.breastcancer.org/community/virtual-meetups

  • chicagoan
    chicagoan Posts: 1,142

    @creena I do feel fortunate to have good options here in Chicago. Where do you live now?

  • ssales13
    ssales13 Posts: 91

    moderators thank you! I will definitely do the virtual meet ups. Do you all meet up on the same nights every week? And what time? Thank you

  • sf-cakes
    sf-cakes Posts: 644

    @ssales13 I've been stage 4 about 4.5 years now, bone mets currently stable. The first few months passed like something out of a nightmare, sobbing a lot and could barely sleep... but once I got used to my treatments and regular scans, I found I could breathe and be calm (mostly) again.

    Please allow yourself whatever you need to adjust to this new reality.

  • ssales13
    ssales13 Posts: 91

    @ Sf-cakes 4.5 years that’s great.Im glad you are stable and hope you stay that way for a long long time. Yes I can relate to the something out of a nightmare! Thank you for responding. I really appreciate it.

  • moderators
    moderators Posts: 8,910

    @creena, Welcome to our community as well, although we're sorry for the reasons that first led you here. We do invite you to join our MBC Zoom meetups as well — where you can meet others with similar stories and find additional support. We are happy to have you here!

  • seeq
    seeq Posts: 1,198

    @ssales13 - sorry you have to be here, but this is a great group of people here. When/if you want to talk about it, the Stage IV Zoom meet-ups are really good, too.

    I was dx'd de novo with liver mets in June of 2020. I've been NED (No Evidence of Disease on scans) since April 2021 on Verzenio and anastrozole. New treatments keep coming along.

    You'll feel better to have a plan and get settled in on treatment. Better, again, when you get confirmation that the treatment is working.

  • creena
    creena Posts: 5

    @chicagoan I am now live in north central Florida. I won't be here long though…it's miserable here without family. We're most likely going to TN after school lets out so I can go to Vanderbilt Ingram Cancer Center. I am not happy with my current care. This is only because we have family there and my husband doesn't want to back to IL where we also have family.

  • chicagoan
    chicagoan Posts: 1,142

    @creena-I can't blame your husband with IL's crazy taxes. I've heard that Tennessee is really nice and I would imagine the Vanderbilt center is very good.

  • ssales13
    ssales13 Posts: 91

    seeq that’s great NED since April 2021! So happy for you. I went to see the oncologist today it was my first visit. I have to have a bone biopsy on the 24 th . He wants to make sure that it’s cancer and to make sure it’s the same as the lump in my breast. I don’t see him again until February 3rd and he said that’s when I will go on the estrogen blocker and another medication. He asked me if I wanted to know statistically how long I had but I declined. I did ask him about his other stage 4 patients. He said most were between 5 and 10 years. I just can’t wait to get started. He also said I will not have chemo, radiation or surgery. He said he doesn’t feel like it would be a benefit to me. I’m nervous. I hope I do well on these medications. Thanks for responding and listening.

  • I was first diagnosed in 2009 at age 48 with stage 1, IDC. Fifteen years later, in June of 2024, I was diagnosed stage IV with mets to one spot in sternum and some possible lymph nodes in anterior mediastinum (only sternum was biopsied). So I am going strong at stage IV for 7 months. However, according to one of my doctors, the mets were probably there for at least 2 years prior to diagnosis. So glad to hear that many of you are going strong for so many years. I hope to be in your camp, too!

    Best,

    Pam

  • ssales13
    ssales13 Posts: 91

    @livinglifenow im glad your doing good at 7 months. I’m just starting out with this. I have to have a biopsy of one of the bone Mets that I have and then I should be starting hormone blockers and another medication after I see the oncologist on February 3rd. This group is so uplifting and brings great hope to me. I hope I can eventually be where others are at and feeling good and living life to the fullest.

  • tougholdcrow
    tougholdcrow Posts: 241

    A while ago, I did a count of members posting on this site who were living past five years and it was an astonishing number, about 125, with many past 10 years. Of course, there have been many precious lives lost, and serious struggle and grief here, but there is much hope too. People are beating the odds, even when they were diagnosed before the revolutionary new meds came.

  • creena
    creena Posts: 5

    I plan on living for a minimum of 10 years with this. I have three boys - the youngest being 9 and I am NOT going to let them grow up without me! Though I had my setbacks with the Keytruda (thyroid/tachycardia and Addison's disease), I am an onward and upward kind of girl so let's do this! 💪

  • ssales13
    ssales13 Posts: 91

    @tougholdcrow wow 125 that’s great. Yes I agree sadly there are precious lives lost . I’m thankful for newer medicine that’s come out to treat all of us and hope we have many many years .

    @creena I plan on it too! You’ve got this!

  • ssales13
    ssales13 Posts: 91

    Hi @rlschaller I’m so glad you are NED and doing well. This thread has been a lifeline for me. I don’t feel so alone. I appreciate every post.

  • rlschaller
    rlschaller Posts: 430

    @ssales13 thank you. Im so glad you do not feel so alone now, the BCO has been a life line for me too. So much love and support is here for everyone , soak it in and share it back. Good stuff. Virtual hugs is a good meditation !

  • Yes, @ssales13, know that you are not alone. We each have a road to travel, but we travel in camaraderie, and that is an enormous comfort.

  • ssales13
    ssales13 Posts: 91

    @malleemiss251 Absolutely!

  • AJ
    AJ Posts: 292
    edited January 9

    @ssales13 , I’ve been stage 4 for two years. The first few months I was a ball of anxiety and sadness. Now I’m on good meds and am living my life. I try to get exercise and travel. Since diagnosis I’ve been all over the world, most recently to Botswana. I really have minimal symptoms from the cancer, just side effects from the treatments. But I keep on keeping on. And I recommend the virtual meetups! Such good support!

  • ssales13
    ssales13 Posts: 91

    @livinglifenow thank you. That’s great advice. I’m so glad you are doing well and living life. I can’t wait to get to that point. I’m so glad that I have you all to talk to. I appreciate it so much.

  • ssales13
    ssales13 Posts: 91

    @AJ im so glad that your doing good and are out traveling the world. I’m planning on attending the virtual meetups hopefully next week. Thank you so much for reaching out. I really appreciate everyone on here. I can’t wait until get to the point where you are.

  • @AJ You are an inspiration to us all!!

    Pam

  • AJ
    AJ Posts: 292

    The reality hits me at times, mostly around scan time. Tomorrow I have a brain MRI.

  • @AJ Sending hugs your way!

    Pam 🤗

  • ssales13
    ssales13 Posts: 91

    @malleemiss251 ❤️❤️❤️