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Any stage IV surviving 5+ years ?

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  • candy-678
    candy-678 Member Posts: 4,098
    edited March 2019
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    Dorimak--- Thanks for clarifying and I PM'd you.  

  • BuckeyeAmy
    BuckeyeAmy Member Posts: 7
    edited March 2019
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    Nine years since I became stage IV

  • Lily55
    Lily55 Member Posts: 1,748
    edited March 2019
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    A great thread, thank you......given me some hope......only diagnosed Stage 4 last month and was a real shock as had bad back pain.....and had been clear just a few weeks before....am wondering if it really is worth it

    Have been told chemo is my only option and I am really scared about it.......I live alone now, no family in same country and have numerous drug sensitivities...

    Can I ask, are you all living good full lives doing a fair proportion of things you like to do? Like more than 50% of the time......?

    I have multiple mets in back and ribs and was told I will never drive again and its all been very negative...I am determined to drive again as there is no public transport here but so far every week and every visit to the hospital has brought more bad news.....I am emotionally worn out....

  • divinemrsm
    divinemrsm Member Posts: 6,074
    edited March 2019
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    Lily, sorry to learn of your metastatic diagnosis. Please know that it is definitely possible to continue living a full life with mbc. I found I needed to pace myself and not take on so much all at one time, but I have had some of the most fulfilling times in my life since mbc, not because of it but in spite of it. I learned to weed out the unnecessary things in life and give my attention to the more meaningful parts. Many of us still have full lives, work, travel, family time, even buying cars and houses. Your fears and concerns are very understandable. I wouldnt let anyone else decide if you can or cannot drive again. It is very possible you may. Please see if you can get some more positive health care professionals in your corner. Best wishes.

  • dorimak
    dorimak Member Posts: 89
    edited March 2019
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    Hi Lily55, I too have no family in this country and due to a divorce five years ago, I lost some of my closest friends and live alone so understand your fear. it sounds like you definitely need a second opinion. Do not go straight to chemo without this. . I obviously don't know your complete information but First of all it looks like you are ER+/PR+ and the first lines of treatment are usually hormonal. For various reasons I changed oncologists three times in the first frew years. Each were consistent with the first lines of treatment which is a hormonal and maybe a targeted treatment. You will generally see most of the ER+/PR+ individuals on this group go through various hormonal and targeted options. Eventually each becomes resistant and you get switched on to the next one. There several others to follow and many get years on their first. Some seem to get to no evidence of active disease on their meds. Some have different side effects but definitely possible to lead normal lives. Many are working full-time. My biggest issue was fatigue and I was close to retirement anyway and I went on disability (which you can expedited approval with a metastatic diagnosis).


    I am three years in and I have kept my diagnosis private. I have lived a normal life,was working full-time, have been on vacations, go out and socialize, play golf, am involved in various other activities and nobody has a clue what I have going on. Also, new treatments come all the time so one of the drugs that I was on for almost two years had only come out the year or two before. I soon almost forgot about it except for some of the side effects and only time I'd get really anxious was when it was time for my three month scans. I have had a recent setback that's put me in turmoil at the moment but hoping that I'm getting back on track. My main suggestion to you is to get a second opinion and definitely with an oncologist who is not associated with the same practice as the one you've seen. If you have a cancer center or a university hospital even better.

  • Lily55
    Lily55 Member Posts: 1,748
    edited March 2019
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    Thanks for your replies, much appreciated as need something to hang on to.

    Dorimak I did do all the anti hormonals before over the last 7 years, well I did 6 years of them staying on Aromasin for 3.5 years.

    I don´t have a choice of Oncologist, or hospital or centre as its a public free service here....... I was told I would go on targeted therapy but when I sent to the medical oncologist appointment she told me there were no targets......BIOPSY REPORT SAYS THIS

    IHQ was done

    GATA 3. CKAE1/AE3 and CK7 positive (but what are these?)

    Oestrogen - positive but 5 to 8% and not enough to make a big enough target against the extensive mets I have

    Progesterone and Her2 - both NEGATIVE

    METASTASES -

    Shattered vertebra on T9

    Fractured T 5 and T6

    Multiple skeletal areas.

    Right parietal temporal bone in head

    Dorsal column, multiple anterior and posterior costal arches of ribs, right and left,

    Sacro iliac joints, both iliac bones and the proximal extreme of both femurs..

    I can feel my ribs clicking against each other at times and hear it too and I have seen the scan.......I cannot actually be without the corset as there are too manty weak links and I am in more pain within ten minutes, even when seated.....

    I don´t think hormones are going to cut it against all this activity but was hoping for targeted therapy......this has all happened so fast I have not had time to assimilate it but my instinct is I do need some treatment fast.....I had radiotherapy and that helped but there are too many mets too close together to be able to do more of that right now

    i am shocked there was this much going on and no one knew.....

    I did add my Stage 4 diagnosis but its not showing on my info.....what could I have done wrong for it not to show?



  • ann273
    ann273 Member Posts: 122
    edited April 2019
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    Hi Lily, I also used to be stage 3 and progressed to stage 4 while not having any family where I live. Its now been 4 years since I have been diagnosed as stage 4 and in those years I have mostly led a normal life. Most of us here understand the feeling of hopelessness but there are so many of us who are thriving. I am sure someone on here who is triple negative will chime in with their experiences. Please hang in there, once you have a treatment plan in place you feel a little bit more in control of this situation!

  • dorimak
    dorimak Member Posts: 89
    edited April 2019
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    Lilly55 I'm sorry I didn't realize the extent of the disease. It sounded from your post that you were just diagnosed and were somewhat early in the process (or maybe you are but are just now finding out). I do think that the initial shock is the worst. While the journey isn't easy, we seem to develop resilience and do what we need to do. There will be ups and downs but I hope you get to where you can find things you enjoy. Keep us posted on your progress. Hugs.

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
    edited April 2019
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    hi lily - were you able to figure out how to enter your info? If you go into “My Profile” which is at the top of the page upper right hand corner and click on that.

    Then click on “my diagnosis” and you should be able to enter your info there.

    I’m popping in to get some inspiration and motivation. My body is feeling very tired these past couple weeks and I am in need of seeing people living longer than the stats say we will live. I have been reading articles and they just make for depressing info. The best I got from them is that someone like me: diagnosed at age 40, premenopausal, bone metastasis only, HR+ has a median 4 years to live. Ugh!!! Bleh!!! I have just hit the 2 year mark...difficult to not get wigged out by reading these numbers.

    So grateful for these boards that help remind me that I could have many more great years to come 🙏🏾🙏🏾🙏🏾🙏🏾🙏🏾🙏🏾💜💜💜💜💜🌸🌸🌸🌸

  • mermaid007
    mermaid007 Member Posts: 40
    edited April 2019
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    Hi ,

    Well I'm 4 and half years and only on 2nd treatment for bone/liver mets ( primary was 20 years ago) and I have no intention of going anywhere yet. The stats are so outdated

    Xxx

  • heidihill
    heidihill Member Posts: 1,856
    edited April 2019
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    https://www.cancerguide.org/median_not_msg.html

    I read and re-read this article when I was first diagnosed. Not just that it's so well-written. I did have enough statistics to know what median means but to have it confirmed by a living example was more satisfying, Have plenty of hope!

  • Yvette1952
    Yvette1952 Member Posts: 18
    edited April 2019
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    Mermaid 007 Good to hear, this is the sort of post we all want to see. I was only diagnosed as stage 4 Oct 18, and feel so much strength from this site

  • candy-678
    candy-678 Member Posts: 4,098
    edited April 2019
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    Ichangedmyname--   I totally get it.  Hard not to get depressed in our situation.  I too have those dark thoughts.  I was diagnosed in Sept 2017 so I am 1 year and 7 months into the "countdown".  And time is going fast.  I do try to stay upbeat, but some days it is hard.  

    One good bit of news--I know a lady in my town with bone mets diagnosed 7 years ago I think.  So they are out there.  

    And as I posted in the Ibrance thread a few days back, we can come here for support and honesty in what we are feeling.

    Hugs.

  • B-A-P
    B-A-P Member Posts: 409
    edited April 2019
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    So I am far from the five year mark but I feel like there's a lot of women looking for some positivity here. Two women in my area have been stage 4 for 9 years. 9! One is Her2+ (which was different from her original dx ) and presented with a 5cm liver met. She went on chemo for 7 rounds, and the met went necrotic. They can still see it on scans, but it's tiny and inactive. She's been on Herceptin for 8 years, no progression and a great QOL. Another woman (the two became fast friends and run the local support group), is TN, and recurred after 2 years from a stage 3 diagnosis. She did chemo as well for a certain amount of treatments ( can't remember how many) and maybe rads for the sternum, I can't remember. She had 5 lung mets, a sternal met , and a tumour at the Mx site. She also responded well , and has had ZERO treatment for close to 10 years nows with no progression and stability ( 3 lung mets disappeared and 2 are small and stable).

    They met up with me after my initial diagnosis and were a wealth of information but a beacon of hope for me. Hoping this helps someone else out there. Just because it seems dire, doesn't mean it is :)

  • summerspring
    summerspring Member Posts: 14
    edited April 2019
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    BAP-

    That is all incredible - thank you for posting!! I was diagnosed stage iv TNBCless than a year after being stage 1/ no nodes and clear margins. These stories give me and I’m sure a lot of other ladies so much hope! Thank you 🙏🏼.

  • elderberry
    elderberry Member Posts: 1,064
    edited April 2019
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    B-A-P: man did I ever need to read that! 9 years!! I am just starting chemo next week. RIght now - it is all pretty dark and terrifying. So hard to sleep at night even with Imovane. Ativan gets me through the day. Mermaid007 - you also give me hope. Keep posting!

  • dlb823
    dlb823 Member Posts: 2,701
    edited April 2019
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    I'm @ 5+ years and still going strong. I've had some rough patches when meds have stopped working, and the med combo I'm on now has been really hard on me, and my energy level varies. But most people would never guess I have mbc. I'm also in several FB groups that include quite a few long term survivors. It really all depends on how we respond to our meds, plus I think having a really good onc who specializes in mbc, being an informed patient and involved in tx decisions, all play a role.

  • cure-ious
    cure-ious Member Posts: 2,745
    edited April 2019
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    Congratus DLB, and thanks for all the inspiration you've given us along the way!!

  • mikainsb
    mikainsb Member Posts: 32
    edited April 2019
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    I do something I call negotiating with the statistics. I am 42. The 5 year average is 22%. But then I ask myself, how many of the 78% of women who passed away within five years from MBC were already over 70, likely to pass away of something if not breast cancer during the same timeline. How many of those 78% were just diagnosed too late or already of poor health? Does that 22% survival rate really apply to me? Especially since things like Ibrance only became available in the last three years, so that number may jump up in another couple years.

    And MBC is not one disease. Some of us are blessed with slow growth cancers, and live along time. Others are not so lucky. And the truth is, the doctors don't yet know well enough how to determine who is going to be slow growth/responsive and who is not.

    In the 1980s, AIDS was a death sentence. Now it is practically a chronic disease. MBC patients just have to hold on long enough for that to be true of MBC.

    I am 3.5 years into MBC, and 11 years from initial diagnosis. I am absolutely certain I will make it five years as metastatic. I work full time and travel for work. I am determined to be an outlier. And outliers are not the unicorns we think they are. My Dad's friend's wife was 20 years MBC. I didn't go searching for an outlier. She was just a family friend.

    It is scary as all hell. And every scan I get is traumatic. But, I am determined to be an outlier which is not the same as hoping for a miracle.

    Women do live decades with MBC. The only question is how to be one of them!


  • dlb823
    dlb823 Member Posts: 2,701
    edited April 2019
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  • Yvette1952
    Yvette1952 Member Posts: 18
    edited April 2019
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    Thank you for this. Gives us all hope

  • mikainsb
    mikainsb Member Posts: 32
    edited January 2021
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    I just want to post an update, now 5+ years from stage iv diagnosis in November of 2015.

    My tumors were (and still are) small, but many. It is now over five years later, January of 2021. I am still living a normal life on treatments (more than normal, I hike 20-30 miles a week). While I don't think any oncologists would openly put a guestimate on my life expectancy, I also think most would say I definitely have at least two comfortable years left.

    I don't know why I am different... being a long haul, chronic stage iv versus terminal stage iv. But it is just a matter of time before this is the norm for many stage iv women.

    Hugs, hope, and wellness to all.


  • exbrnxgrl
    exbrnxgrl Member Posts: 4,834
    edited January 2021
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    Congrats, mikainsb! I just hit the 9 1/2 year mark and have been NEAD since initial txI have no idea how or why as I follow no strict regimens. I take an AI every night and that's about it. I wish I knew what it is so I could share it.

  • amontro
    amontro Member Posts: 184
    edited January 2021
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    i have had stage 4 from the start for over 12 years, Mets to lung and spine. I was DXD Sept 2008, MX in Oct, radiation Nov, and chemo Dec 2008. I've been on the same treatment since then and I still get HERCEPTIN which is now KANJINTIN every 3 weeks. I am also on Arimidex. No change in Mets.

    I was told way back then to get my affairs in order, go on a vacation, and buy a wig. Been there, done that. I finally retired at 74.

    I wish you all the best.

  • Bliss58
    Bliss58 Member Posts: 938
    edited February 2021
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    I'm now 5 yrs. 7 mos. with MBC. I've progressed from bone only to liver & lung mets and moving through treatments, but I still live a fairly normal, good life.

  • Bliss58
    Bliss58 Member Posts: 938
    edited February 2021
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    Amontro, congratulations on 12 MBC years! Music to my ears, and here's to many more. I retired last year. A forced retirement, but now I'm very glad.

  • txd
    txd Member Posts: 3
    edited February 2021
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    Hi exbrnxgrl, I was wondering are you still currently taking Ibrance? Just wondering if it's more or less a lifelong drug since Stage IV.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,834
    edited February 2021
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    Hi txd,

    You may me confused with someone else as I have never taken Ibrance. When I was first dx’ed Ibrance had not been approved . I have only been on AI’s since dx so I know little about Ibrance. In general, nothing is alifelong drug at stage IV. For most people, if a treatment fails at some point, they go on to another. I imagine the same might be true of Ibrance.

  • amontro
    amontro Member Posts: 184
    edited February 2021
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    exbrnxgrl, Regarding your post that nothing is a lifelong drug, I am happy to say that I've been on Herceptin (NOW called KANJINTIN) since my initial dx of stage 4. That and ARIMIDEX have been my constants from day one. As you also mentioned about new alternatives, for many years I was fearful that Herceptin would stop working. Now, I see that there are a lot of therapies to try. Stay strong during your current health concern.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,834
    edited February 2021
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    I should add that for most nothing is a lifelong drug because it will likely stop working at some point. I am almost at the 10 year mark and I have switched between all three AI’s. None of them failed me, I was just hoping for less se’s. I guess the bottom line is that most of us will be on some sort of tx for as long as we live.