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Any stage IV surviving 5+ years ?

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  • bailey5
    bailey5 Member Posts: 27
    edited December 2018
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    Was frightened of DX for 6 mos & that still creeps up daily; but not as severe! I'm @ almost 14 mos METS to lungs & lymphnodes. Happy holidays to all!

  • mirryp
    mirryp Member Posts: 15
    edited December 2018
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    7+ years. On my 3rd line treatment. 16 mos. Ixempra/Avastin. 3years Femara, then Arimidex ever since. I received Zometa bi monthly the first 5 years. I now have severe osteonecrosis my main issue. They have decided they probably overtreated my bone mets, but I am still here.

  • dawny
    dawny Member Posts: 588
    edited December 2018
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    7 years, and 7 months for me. Currently NED

  • laurac1014
    laurac1014 Member Posts: 1
    edited December 2018
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    Its Wonderful to hear someone say I feel great. I am walking down this same path as of last month. Thank you !

  • dorimak
    dorimak Member Posts: 89
    edited December 2018
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    Great to see so many living life and really great for those who are NED. May we all continue to hit milestones like 10, 15, 20 years with good quality of life! Blessings to all.

  • Janice54
    Janice54 Member Posts: 23
    edited December 2018
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    I am going on 13 years. I was dx and told I had three years. WRONG ANSWER. Six month after my dx and only taking tamoxifen,I was NED. I remained so until 4 1/2 years ago. It came back in my liver. Went on femara and three months later it was gone. I Got a few hot spots on my spine and switched to flasodex 6 months ago. So far no side effects, No chemo, No rads, No surgery. So we never now how our body will deal with this beast. So I have learned not to go off the deep end. I just take a deep breath and believe it will be fine. As Scarlett says, "I will think about it tomorrow," if things change I deal with it as a chronic problem not a terminal one. Life is good! Bless you all!!❤

  • divinemrsm
    divinemrsm Member Posts: 6,216
    edited December 2018
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    It's wonderful to read all these stories. And Janice, I love and agree with your philosophy on dealing with mbc!


  • tarheelmichelle
    tarheelmichelle Member Posts: 248
    edited December 2018
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    I've been Stage IV for 7 years. I've never been NED; tumors always active. I never expected to live this long. Praise the Lord.

    Many miracles associated with my 7 years. Such as: I progressed when I took Faslodex a few years ago, into my pelvic bones. When I started on Ibrance in 2017, my MO suggested taking it with Faslodex, not with an AI. I had been miserable with bone pain on AIs — not pain from bone mets, pain was an AI side effect.

    Even though I progressed on Faslodex years ago, I've been stable on 100 mgIbrance/Faslodex for 15 cycles. I feel better than I have in 7 years, and go to the gym 3x a week. Life with Stage IV is not easy, but it's fantastic.

  • cure-ious
    cure-ious Member Posts: 2,762
    edited December 2018
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    Remarkable, TarHeel!!! Thanks for that uplifting bit of news, and still on anti-hormonals!!!

  • SusanR
    SusanR Member Posts: 59
    edited January 2019
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    10 years last month since the Stage IV diagnosis. My bones are becoming quite riddled with Mets but I forge on

  • kjones13
    kjones13 Member Posts: 662
    edited February 2019
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    6.5 years and still on first line of treatment. No clue why I am doing so well. Drugs seem to have a cumulative effect but nothing bad at all. Sovery thankful.

  • Hudson32700
    Hudson32700 Member Posts: 1
    edited February 2019
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    10 years this year....denovo presentation in 2009 with low volume of bone mets. Tamoxifen 2.5 years, Femara 2.5 years....Faslodex and then Afinitor for s few months Neither worked ....progression to liver...started on Xeloda, stable on Xeloda for three years. Er pr + and HER2 negative

    (Formerly English Major, lost login 🙁

  • AmyJM
    AmyJM Member Posts: 134
    edited February 2019
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    It will be 6 years this Spring for me. I have mets in my spine, my pelvic bone on one side, and one rib. I've never been NED, but it hasn't spread much either. Some are a little larger and there may be a few more small ones, but it's still just bones only. I changed treatment once so far, when they sort of "woke up" again. I was on Arimidex for over 3 years and have been on Ibrance/Faslodex for 2 1/2 so far.

  • lauriesh
    lauriesh Member Posts: 82
    edited February 2019
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    I was diagnosed in July, 2010 with two liver mets. Had taxotere and herceptin, then added in perjeta when it became approved. I had ablation to the liver on feb23, 2011 and have been Ned since then, so will be celebrating 8 years Ned this sat. I stopped treatment in 1/2015, so have been on no cancer meds since then.

  • alicia_en_madrid
    alicia_en_madrid Member Posts: 15
    edited February 2019
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    My mother: 8 years since her mets diagnosis. Lobular brest cancer found on one ovary in january 2011. She underwent surgery and had both ovaries removed. Stable since 2011 on Aromasin (in fact she is NED). Quality of life is 10. She helps to look after her 4 grandchildren almost everyday. I was going to make a joke about looking after 4 grandchildren (two of them are 1 year old twins) and quality of life. She would rather be on the beach :-).

    Between 2006 and 2011 she has two breast cancer dx (two rounds of quemo, femara and tamoxifem). Why she has had a much longer period of stability after the mets dx, is something I don't know.



  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
    edited February 2019
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    such inspiring posts!!! Thank you thank you!! I’ll be only 2 years since de novo diagnosis in April, however I feel like I have so many more years left in body :) this builds hope and confidence to no end - allows room to breathe and enjoy life!

    Question: are all of you amazing NED’ers still working? Full time? Part time? I’m 41 (almost 42) and I am working part time. My family is helping me pay my rent so I can heal and rest. More than Sometimes I feel guilty for relying on them so heavily financially. I am wondering if I should work more so I can help contribute, but I worry that it’s the over-working and exhausting days that led me to get sick in the first place. Thank you for your input! Hugs to all

  • birchbark26
    birchbark26 Member Posts: 6
    edited February 2019
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    I LOVE reading these inspirational posts

    My 32 year old daughter has stage IV breast cancer de novo. She is doing very well on Herceptin and Perjeta after one round of Taxol

    I wish you all continued health!

    Thank you for making me feel better ton

  • HLB
    HLB Member Posts: 740
    edited February 2019
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    Philly I am not NED but I am working FT. I would rather not work at all but that's how I get health insurance, which I'm sure would not be affordable on disability and I refuse to be poor! If it's feasible, stay with pt and get enough rest. That's my opinion anyway. It's hard to work ft and get the amount of rest that we need to stay healthy as possible.

  • pippy1963
    pippy1963 Member Posts: 2
    edited March 2019
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    Dorimak

    In 2017 I found a lump in my breast had an lumpectomy 9 lymph nodes removed all clear had no radiation no chemo I was told i had to take anastrozole started three months after lumpectomy. I had a hard time on these pills from the get go. I went on them for a month then told to get off them for a couple of weeks and start them again but my body did not like them. So went off then started on Tamoxifen a month later. On Jan 22 a routine CT scan they found a mass on my lung and a spot on my spine. Just went last week for Lung Biopsy my doctor is bracing me for the worst. I have so many question and now trying to learn the breast cancer terminology.Waiting is the worst started Jan 22 and by March 19 I will know my fate. So many thoughts running in my head I wish I could stop thinking of this for 1 minute. I'm not telling people just my husband and sister. This forum helps. I hate change. For the last 6 years each year my family has lost someone to lung cancer. I'm much younger and don't smoke but the thought is still there. I need a happy moment

    pip

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,070
    edited March 2019
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    lovefromphilly,

    Save for a 3 1/2 monthmedical leave early on, I have worked full time. I am on my feet all day as I teach first grade. I am older than you and my children are grown, so my time is my own after work. I will continue to work for a few more years if my health permits as I love my job

  • dorimak
    dorimak Member Posts: 89
    edited March 2019
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    Pippy1963, this is a very difficult time with the uncertainty. Like waiting for a possible execution. But you will find so many women on these forums doing very well for years and living fairly normal lives. Each year brings new and often kinder treatments. There’s is reason for hope.

  • screech
    screech Member Posts: 63
    edited March 2019
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    I guess I'm coming up on 5 years! Wow! I am feeling great - I never thought my life would be this normal again. I still work my full-time admin. type job AND I work a side-gig as a bartender is a really busy place! For me, I like both of the places I work - especially the restaurant so I have no plans to stop working as long as I feel good. Well, except I am planning to retire from the admin. job in six years when I'm 61.....

  • kskier
    kskier Member Posts: 16
    edited March 2019
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    I may have already contributed earlier to this thread - but adding today that this week marks eleven years since I first noticed that something was wrong with my breast. I was seven months pregnant at the time, and the "baby" is now in fifth grade!

  • HLB
    HLB Member Posts: 740
    edited March 2019
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    Kskier great news! My nephew is 20 and I still call him the baby!

  • dorimak
    dorimak Member Posts: 89
    edited March 2019
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    KSkier, congratulations on this milestone! Long may you enjoy your "baby :)

  • Andi67
    Andi67 Member Posts: 314
    edited March 2019
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    I am at 6.5 years. I still work fulltime.... although at age 52 I think I am slowing down a little. I am hoping to "retire", or at least do something a little less demanding, in a year or two....although sometimes I wonder what I would do if everything went south super quickly and I was told I only had 6 months left. I would quit in a flash... which makes me question if I should be working at all. I do like my job, but it's not exactly meaningful.... anyway... sometimes a dilemma for me. :) 

    XO

    Andrea

  • JFL
    JFL Member Posts: 1,373
    edited March 2019
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    KSkier, love to hear you are 11 years out and your son is in fifth grade. I, too, was diagnosed with mets when I was 7 months pregnant. My little guy is 4 now. Praying that I can continue to raise him as long as possible. He is really my purpose for pushing through all of this without hesitation.

  • dorimak
    dorimak Member Posts: 89
    edited March 2019
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    Andi67 I worked for a couple of years after my DX but at 60 I found the fatigue really hard to deal with. I worked a mile from my house and mostly had to go home at lunch and take a nap. Since I was able to access my retirement funds, I decided to quit. Also worth noting is that if you have metastatic disease you are eligible for an expedited approval for disability with social security. It took three months I think to approve and was effective from the day I left work and payments started 5-6 months. I do find things to do and appreciate not having to work full-time but I do miss my job which I really loved. Everyone is busy at their jobs and I feel out of touch a bit.I do appreciate being able to sleep in or rest as I need. It's a definite dilemma for sure.

  • candy-678
    candy-678 Member Posts: 4,145
    edited March 2019
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    Dorimak---   Concerning your last post.  You didn't go on Soc. Security Disability until a couple of years after your diagnosis?   And you said it was effective from the day you were diagnosed?  Did you then get any backpay for those 2 years you continued to work with the diagnosis?   The reason I ask is I have been diagnosed 1 1/2 years and continue to work full time but in a different position with the same company.  I have wondered about Soc. Security Disability and have posted on this site several times about it.   Someone posted they too were dated as disabled at date of diagnosis and someone else said the date for disability starts when you apply for the Disability.   I wonder if I am pushing myself to continue to work and using the time I have left on this earth working at a job I no longer like.  

  • dorimak
    dorimak Member Posts: 89
    edited March 2019
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    Candy-678 sorry my bad. I should have said it was effective from the day I stopped working. I corrected it above. So I stopped working at the end of Aug 17 and filed my application. I got my approval pretty quickly but there's a five month wait before payments begin. I began receiving payments Feb 2018. You can see the estimated amount by getting your latest social security statement but it's about the amount of what you would be paid at full retirement age. You can also earn up to $1,180 with some part-time work and still collect if you need the income.

    The cancer center had a resource who helped with the application as they know how to correctly fill out the form to avoid any delays. Generally it can take a couple of years to get approved for disability and even then many have to get an attorney but there's an expedited process for metastatic disease. I have to say I enjoyed my job and miss it on some level but I had no energy left to do much else.