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Any stage IV surviving 5+ years ?

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  • grit_a
    grit_a Member Posts: 13
    edited October 2023
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    Thank you everyone for sharing your story. I'm Stage IV de novo. bone mets diagnosed in September, 2023 a week before my 42nd birthday. I have a 5 year old and I really want to be here with her and for her. I find reading your stories so helpful on days where I just can't think about anything else.

  • positive2strong
    positive2strong Member Posts: 209
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    ok here’s the latest, my scan results showed 3 liver Mets increased in size to 3.8 from 1

    So my onc took me off faxodex and Ibrance and I need a liver biopsy to make sure cancer hasn’t changed and then she said it will take 2-3 weeks to get northstar blood work back and then she will see what new medicine I start taking. She said I didn’t have to make out my will yet. That she has many women that have to change treatment and today 5here are many options. Of course I hate 5he waiting and anyone else that has gone thru this.

    So happy for all of you that are doing well for so long ……I was so happy when 5hose liver Mets decreased in size now progression.

    Love to hear from you

  • moderators
    moderators Posts: 8,289
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    @positive2strong we're so sorry to hear about the progression. We know that waiting can be frustrating, but the optimistic outlook of your oncologist is reassuring! Please, let us know about your biopsy procedure and the results when you receive them. We're thinking of you, and sending you virtual hugs!


    The Mods

  • moderators
    moderators Posts: 8,289
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    @grit_a - Welcome to our community! Sorry for the reason, but glad to have you here. We know how scary it can be a stage IV diagnosis, especially at such a young age, but as you can really see, you are not alone with this. Besides this wonderful group, you can meet others who have been diagnosed at a young age in the Young With Breast Cancer forum. You may also benefit from our free weekly virtual meet-ups with other young stage IV BCO members, where you can share and ask questions in real-time, and get to know others facing the unique challenges of metastatic breast cancer at a young age. In case you might be interested, you can register here: Virtual Community Meetups.

    Hope this helps! And please, keep us updated on how things are going.

    Warmly,

    The Mods

  • irishlove
    irishlove Member Posts: 532
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    @positive2strong Oh I am so sorry for your scan results showing some progression. How long were you on Ibrance/Faslodex combo? You sure have a confident MO and that support is just what is needed. I hope they find the answers quickly for you and in the meantime, try to stay busy with your family/pets. Thinking of you and sending healing wishes.

    Laurel

  • positive2strong
    positive2strong Member Posts: 209
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    irishlove

    I started Faslodex and Ibrance around June 2021 and started with 150 Ibrance was too sick with that went down to 75 ml. I had to go off it for surgery in September then back on. I was so happy when my scan showed some Mets decreased ironically the liver Mets. I really had no side effects except low white cell and then I’d have to go off for a week.

    I hope to hear from those that have had to go on targeted therapy for the liver. And those that have gone on several changes of medications and still is thriving.

    Today I am very down and what makes it worse is my husband seems oblivious.

    The woman that have been thru it and share their stories really helps as they give me hope.
    my onc is so casual I have to pull info out of her. I said to her #1 deaths for woman is breast cance4 she sai$ no it is lung Breast cancer is #1 in number but not in death. She said I couldn’t do this if I had to deliver bad news. Meanwhile I have to wait 2 weeks or more for 5he blood work to come back and for an opening appointmen5 for the liver biopsy.

    I was sailing along and now stuck on a sandbar hoping it isn’t a shipwreck

  • irishlove
    irishlove Member Posts: 532
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    @positive2strong I'm so sorry your going thru all this and your DH, sounds like he's checked-out. Maybe that's his coping mechanism. I hope someone posts that have been down this road to bring your spirits back up. So many treatments are out there, it's just change is difficult. I'll keep you in my thoughts and in your pocket for your biopsy and treatment.]

    Laurel

  • positive2strong
    positive2strong Member Posts: 209
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    @irishlove thank you I’ve finally been prescribed Orserdu but can’t afford it at 25,000 a month they are looking for funding. I’ve been without any medication since September

    Thanks for the support

  • irishlove
    irishlove Member Posts: 532
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    @positive2strong That drug price is ridiculous. And being without meds is not acceptable. Keep trying to find funding. I was just turned down for Amgen's Xgeva copay because I am on Medicare Advantage. So I'll stick with Zometa. But honestly how could anyone afford $25,000 a month. That's more then my annual income. geez…..

  • positive2strong
    positive2strong Member Posts: 209
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    irishlove

    I know I’m pretty depressed. I was breezing along on Ibrance and Faslodex until I wasn’t

    Pfiser gave me Ibrance but some of these companies like Amgen won’t fund. I used to work with Pharma and I saw the money they blew taking docs and others out etc in the day they paudvtheir travel, cruises etc they have limited that now

  • positive2strong
    positive2strong Member Posts: 209
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    I pay 500 a month for xgeva maybe I should ask about Zometa

  • irishlove
    irishlove Member Posts: 532
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    @positive2strong I was set to switch to Xgeva until I found out about my copay, which is also $500 a month. These Pharma companies need to be more compassionate. Zometa is IV infusion, which is why I was hoping for Xgeva. My veins are shot and I can no longer use my left arm due to lymphaedema.

    Laurel

  • tami444
    tami444 Member Posts: 5
    edited December 2023
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    Hello everyone, we knew I was stage iv in January 2006 …. Nearly 18 years ago. I just got back into my account on this forum attempting to find the thread from long ago about filing on life insurance policies with terminal riders … hmmm from back about 2008 I think. I’m helping a newer stage iv in my area (panhandle of Florida). That’s when I saw this post and am taking the time to post this. I should also mention that I am still getting Herceptin …. Even though I am allergic to it. My allergist devised a protocol which enables me to still get it.

  • margesimpson
    margesimpson Member Posts: 70
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    @tami444 thats great to hear- what are your Mets?

  • seeq
    seeq Member Posts: 1,132
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    @kbl - I think you've talked the life insurance rider question from tami444. I hope it's appropriate for me to tag you here.

  • kbl
    kbl Member Posts: 2,797
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    @seeq of course it’s okay. Thank you.

    @tami444 I took mine. It’s an accelerated death benefit. My doctor was hesitant to sign it because it said I was estimated to die within 24 months. I finally convinced him because how did we know, and it was an estimate. I was able to get 60% of the policy. My husband will get the other 40% after I pass, unless I live to 65. I’m 62. Then it will drop to 20%. There was another part where my premium was also paid for if I was under 60. Once I reached 60, I had to start paying them again.

    I’m in north Florida as well. Not as far west as the panhandle but close.

  • nnguyen
    nnguyen Member Posts: 52
    edited December 2023
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  • moderators
    moderators Posts: 8,289
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    We love to hear stories like yours, @uppersouth65! Wishing you many, many more years.

    The Mods

  • kbl
    kbl Member Posts: 2,797
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    @uppersouth65 It’s great to hear your story. I know it will help someone who is just being diagnosed if they hear stories like ours that we can live with Stage IV for a very long time. I’m so happy you’ve gotten to experience all the things you weren’t sure you would be here for. Have a wonderful holiday.

  • woodlands
    woodlands Member Posts: 72
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    I just began my fifth year. I will be starting my 8th line of treatment. My body does not react at all to estrogen therapy, so the only medicine that worked for me was Xeloda (a chemo pill) and Enhertu, but it gave me a cough so I had to stop. I was denovo when I woke up to pain and found the tumor in my left breast on 1/1/20. The mets are only in my bones and I can't feel them. We just stopped Faslodex which didn't work at all. My tumor markers rose from 275 to 2888 in 2 months. I am having a port put in on Wednesday and will start Taxol three weeks on and one week off, once a week until it stops working. The plan is a lumpectomy and removal of very large lymph nodes - all recently devloped during Faslodex. Any suggestions to put up with Taxol or a lumpectomy? A special shirt, etc.

  • kbl
    kbl Member Posts: 2,797
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    Woodlands(Francie) Did they check you for the ESR1 mutation?

  • moderators
    moderators Posts: 8,289
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    Hey Francie, We're thinking of you ❤️ Just remember to ice your hands and feet, as you know.

  • jojo71
    jojo71 Member Posts: 20
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    It's been almost 9 years for me. Stage 4 in 2015. I was er+, then tn, now er+ again. Ibrance kept me NED for 6 years. Then did xeloda. Just got new mets and have not started treatment yet.

  • amel_83
    amel_83 Member Posts: 169
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    @jojo71

    Wow 9 year! Thank you for sharing!

    I hope the new med you will strart will work on you for really long time sgain, best wishes

  • moderators
    moderators Posts: 8,289
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    @jojo71 - We're sorry to hear about this new diagnosis you're facing, and we're hopeful that the next treatment will bring positive results. Please, keep us posted and know that you're not alone in this wonderful community!

    Sending lots of hugs.
    The Mods

  • cure-ious
    cure-ious Member Posts: 2,762
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    JoJo- Many congratulations! I am also from the 2015 (summer) cohort. So after endocrine therapy, it seems you still got around 3 years on Xeloda? Is the cancer bone-only, oligometastatic, or other?

  • jojo71
    jojo71 Member Posts: 20
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    Mine has been an interesting journey. I was stage 3 in 2011. I did hyperthermia and low dose radiation. Stage 4 in 2015. It was in the liver, pleura, and bone. I did xeloda for 6 months, then letrozole and ibrance. In 2021 it came back in my spine and a new cancer(they think) in the same breast. The breast tumor was triple negative. So carbo/taxol, then mastectomy. Then back on xeloda for 8 months or so. Now it's back in liver and omentum, but now it's high ER positive again. And my PR is higher than the original cancer! But my doctor wants me to do enhertu, not hormone treatment. Going to get a second opinion…

  • cure-ious
    cure-ious Member Posts: 2,762
    edited March 28
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    Wow, JoJo, you're tough! Well maybe the MO is liking how well chemos have worked, but you did also do very well on ET. Have they done genomic testing? If it was me, I'd want to give hormone treatment another go, too, but you'd want to know about ESR1, PI3KCA, etc to know what to pair it with. If nothing obvious, at least an oral SERD or PROTAC with Verzenio, which is supposedly great on liver mets…

  • jojo71
    jojo71 Member Posts: 20
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    She is going to send it for genomic testing. The biopsy was just done Monday. I'm not familiar with protac.