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STAVE IV METASTATIC BREAST CANCER LONG SURVIVORS

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LENAGREECE
LENAGREECE Member Posts: 23

Just diagnosed with bone mets. Soooo scared.

Is there any long met survivors around?

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  • divinemrsm
    divinemrsm Member Posts: 6,080
    edited January 2017
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    Six year and stable. Recently posted about it here:

    https://community.breastcancer.org/forum/8/topics/...

    You will find a number of us here living with this disease for years.

    This thread on tips for stage iv newbies may also help you:

    https://community.breastcancer.org/forum/8/topics/...



  • dlb823
    dlb823 Member Posts: 2,701
    edited January 2017
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    Kαλή μέρα, Lena! I'm so sorry about your recent diagnosis, but there are many of us here living with bone mets and doing great I've just passed my three year mark, and while the first few months were rough, once you get any pain under control and get on a good drug regimen, which should also help with any pain you're having, you'll be surprised at how your outlook changes.

    Come join us on the Bone Mets thread here: https://community.breastcancer.org/forum/8/topics/..., where you'll find a very supportive group of women.

    How did they find your mets? What med(s) are you on?

    Hugs, Deanna

  • tina2
    tina2 Member Posts: 757
    edited January 2017
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    Many of us, Lena! And all of us were terrified until we got a plan in place and treatment began to work.

    I am happy to tell you that it has been five years since I was diagnosed with lung mets. I'm still chugging along on my first treatment (Faslodex) and doing well. Take a look around this forum and you'll read lots of encouraging histories.

    Tina

  • SusanR
    SusanR Member Posts: 59
    edited January 2017
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    8 years with bone mets!  So sorry you have joined us but welcome Lena.  There are so many inspiring and informative people here who will help you navigate this scary new diagnosis and then you will begin to breath again!

    SusanR

  • LENAGREECE
    LENAGREECE Member Posts: 23
    edited January 2017
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    Thank you so much for your sweet and inspiring replies.

    I found my mets in a yearly test, have no serious pain and I am on ARIMIDEX at least for the next three months.

    I wish for you (and me) many years to follow. Here in Greece things are so difficult I want to help my daughters find their way, I do not want to cause pain to people I love.

    (I read again and again you replies. I am so sensitive lately)


    Thank you,

    Lena

  • RosesToeses
    RosesToeses Member Posts: 244
    edited January 2017
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    Lena, so sorry you have to be here, but the ladies above are correct, there are a lot of us who are doing well for years and after you get over the initial shock you'll still have some frightened moments but it does get easier. 

    I'm 3 years out from my stage IV diagnosis, I've had 2 treatments that have worked for over a year and 2 that never really took, but aside from scans and doctor's visits my life is very much as it always was.  I work, I take care of my family, and I do things just like I always have. 

    There's a lot of uncertainty, of course, but there's a really good chance you'll be there for years to help your daughters and enjoy your family.

  • divinemrsm
    divinemrsm Member Posts: 6,080
    edited January 2017
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    One cannot help but look at life differently after a diagnosis of mbc. I didn't want it to change me, but in many ways, it has.

    One thing I think a lot of people in good health do is see life stretching out before them and they are so busy looking at the future, planning it, they are not as aware of being in the here and now. I was like that to a degree. Before bc, I was deeply appreciative of my life, aware I had many things going for me; it's not like I needed some kind of wake up call. But after diagnosis, I learned to put more of my focus and energy on the day at hand, the present moment.

    My suggestion is try not to project yourself into the future so much. Try to live just today. Then do the same the next day. I have had some of the best moments of my life after the bc diagnosis, not because of it but in spite of it. Many of us frame it as living with breast cancer, not dying from it.

  • LENAGREECE
    LENAGREECE Member Posts: 23
    edited January 2017
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    Thank you so much Ladies.

    Unfortunatelly I am not familiar with English so I have some difficulties in expressing my thoughts.

    Till now I had a wonderful life full of love and joy. I travelled a lot, I had a lot of fun and in a country of crisis not much problems.

    Forgive my negative thoughts but it was a shock for me. I am working very hard with my self in order to accept the new situation. I am a positive person in general and I think that very soon I will be able to manage.

    Your support is more important than you can think.


    Thank you all,

    Lena

  • divinemrsm
    divinemrsm Member Posts: 6,080
    edited January 2017
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    Lena, you do not have to apologize for negative thoughts. It takes awhile to wrap your head around a new reality. Embrace your feelings. It is a lot to deal with. We all have our dark times. It may be necessary to go through them first to get to the place where you feel like you can move forward. Even moving forward may just mean baby steps, and that is okay.

    One thing you say is you have had a life filled with love and joy and that you had many travels. I think that is wonderful that you have led a full life. You may find that there are still more experiences you want to have, more olaces you want to see. When you feel like it, take some time to think about these things and see what you might like to do when you are feelng up to it. But by all means, honor how you feel now and work through it. Also, many of us do rely on antidepressants or antianxiety meds to help us cope. If you think meds may help, please discuss it with your doctor.

  • Fitztwins
    Fitztwins Member Posts: 144
    edited January 2017
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    8 1/2 years. Bone and Lung mets, Triple +++ mainly stable!

  • Groovywilma
    Groovywilma Member Posts: 47
    edited January 2017
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    6 years here. Life continues even when you have metastatic cancer. It's a big part of life, but it doesn't have to take over your life. Wishing you the all the best!

  • LENAGREECE
    LENAGREECE Member Posts: 23
    edited January 2017
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    image

    My loves, my life.

    Thank you for inspiration and courage. Need it now.

    Life will go on despite cancer. I wish good years to come for all of us..

  • heidihill
    heidihill Member Posts: 1,856
    edited January 2017
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    Lovely family!!

    My daughter was 7 when I was diagnosed with mets, now she's 17.

  • jacque1102
    jacque1102 Member Posts: 14
    edited January 2017
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    Just now read this. I have been living with metastatic disease for 5 years and 3 months. It is possible. Try not to look at stats.

  • AmyQ
    AmyQ Member Posts: 821
    edited January 2017
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    What a beautiful family Lena. Thank you for sharing your family with us.

    I'm four years on February 7th with bone mets and two small spots on my liver. I still can hardly believe it spread to soft tissues and like you, felt like the end is near, however have much more optimism with my latest treatment. I read somewhere here that bone mets do not kill a person. I like to believe that is true.

    Good luck to you and thanks again for sharing your beautiful family with us.

    Amy

  • ronniekay
    ronniekay Member Posts: 657
    edited January 2017
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    Hi Lena...Sister! I can hardly tell which is you in the picture...such a lovely group of young women! December 21st was my 4th yr of mets anniversary...7.5 with the beast...and 5 months was the "projected" life span for me, with a liver filled with tumors! There is hope, there is love, there is support, there is medicine...advocate for your life & when that seems too hard, have your beautiful family advocate for you! You are part of our family now...a safe place to ask & share any thought or feeling, joy or fear! Glad you've found this place!!!

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,845
    edited January 2017
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    I've passed the 5 year mark. I still work full time and have become a grandmother, twice, since my dx. I am very hopeful, with a large side of pragmatism. There is no guarantee that we will do well or not do well. Take good care of yourself and find as much joy as you can

  • nbnotes
    nbnotes Member Posts: 338
    edited January 2017
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    I am 4 1/2 years out from my original diagnosis, and we know I was really stage IV from the start as it was found 3 months later in my liver in an amount that couldn't have just grown that quickly. After AC 6 doses, a hysterectomy and starting arimidex, I was found to be NED and stayed there for 45 months. Just recently recurred with a lymph node, and I began Faslodex and Ibrance this month. During the past 4 1/2 years, I have had little to no side effects and have managed to still hold down a college full time and some part time teaching jobs. I've also been lucky enough to cross 46 places off my ever growing living list, and I have plans in the works to get to 7 more. I gave myself 5 years to go crazy with travel, and then I have to focus on paying it off. I wasn't always sure of my future, but I am pretty sure I better start working harder on those travel bills, lol.

  • neogirl
    neogirl Member Posts: 54
    edited January 2017
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    Hi Lena,

    I have bone mets only. I have been on tamoxifen for 7 years and just recently started on Arimidex for 1 year now with very little side effects. You can live a pretty much normal life. I watch my grandson who is 1 1/2 years old everyday who we call a little tornado. You have a beautiful family too. Which one is you and are they your sisters? Take care of yourself, enjoy life and you will do fine.

  • workingmom10
    workingmom10 Member Posts: 25
    edited March 2017
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    I was just diagnosed with MBC in Nov 2016 and just completed my 10th treatment of taxol. I'm scheduled for 12. I had mets in my bones and lymph nodes. I had scans a few days ago and am hoping for good results when I see my doctor next week. I've been feeling better and tolerating the chemo well. My TMs have also gone from 82 when I started chemo down to 54. I remember asking the dr when I was in the hospital "'Am I going to die?" when I first heard my diagnosis. Now I'm planning to be here for quite a while for my husband and my son!

    Christineimage

  • tina2
    tina2 Member Posts: 757
    edited January 2017
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    Thank you for sharing those lovely photos of your families, Lena and Workingmom!

    Tina

  • LENAGREECE
    LENAGREECE Member Posts: 23
    edited January 2017
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    Thank you all for your kind support. I think only you can understand what I am dealing with.

    Allthough I have a very good onco team I hold my breath till next scan. I have "only" bone mets and I am very low ER30% and PR10%. I am very anxious about the possibilities. For the time beeing I m on Arimidex hoping to work.

    Also here in Greece we have not yet Ibrance which looks like a very good medicine.


    Thank God I found you!

    (You are so kind. These are my daughters and I think it is obvious who is me)

  • BongKong
    BongKong Member Posts: 1
    edited February 2017
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    I have been IV for 15 years. Considering how long it has been, the time has gone by amazingly fast. Anyway I am Her 2 + and currently Estrogen + but Progesterone -. The hormone piece has been up & down with each of 3 biopsies. I had the first lung biopsy in 2002 and a 2nd one last summer. In between, 2009, I had a 'local' occurrence / recurrence. In any case, my cancer has been 'indolent' thus far. I have never had chemo because it wasn't the standard in 1999 & they just never thought it was necessary. I fought pretty hard for it in 2009 but in the end the docs know more than i do. Although I like to do a lot research. My scans in October & January suggest nothing much is happening so I remain on Herceptin & letrozole. I had been on aromas / exmenestane for 14 years so we decided to change at least something up last summer. I like to be proactive & try to stay on a good diet although i just ate a small bag of potato chips. I do yoga several times a week and try to meditate every day, go to church on Sundays, work out in the gym a bit , play golf sometimes, tennis when possible, hike outside. Luck plays a pretty big part in this even if it is genetic luck.

  • Jaynina
    Jaynina Member Posts: 1
    edited February 2017
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    Dear BongKong,

    Thanks so much for sharing your great information. It's really inspiring for me and others!


    Wish you a good health!

    Nina

  • heidihill
    heidihill Member Posts: 1,856
    edited February 2017
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    Bong, you've made my day!! I can dare to think of also going for 15. Keep on doing what you're doing. Your genes obviously have responded quite favorably.

  • zarovka
    zarovka Member Posts: 2,959
    edited February 2017
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    Lena - Welcome. Take it one day at a time and you will find you have more than enough time.

    >Z<

  • kskier
    kskier Member Posts: 16
    edited March 2017
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    Nine years. The baby I was pregnant with when I noticed the hardness in my breast turns 9 in May.

  • stagefree
    stagefree Member Posts: 360
    edited March 2017
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    hey neighbor :)

    Hmm.. wish I didn't meet you here and this way, would have preferred a coffee on the island of KOS.. right across Bodrum.. yet here we are.

    I've almost reached 5 years since dx, and enjoying my new normal life as much as I can. Bone mets only sound doable, trust me.. And there are lots of meds to kick out those c-buggers.

    It takes time to calm down, digest the news and move on. Hope you have the best of quality life from now on as long as until the real cure is found..

    Hugs for now,

    Ebru from İstanbu


  • chatsworthgirl
    chatsworthgirl Member Posts: 197
    edited March 2017
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    Well, just when I thought it was safe to go back in the water....

    Diagnosed in 2011 Stage 11, mastectomy, chemo, radiation, Arimidex for a year and a half and couldn't take it any more.

    Just got the news that I have scattered bone mets on ribs and lower back, pelvis. On Femara. Freaked out for the first few days. Hoping the drug will work for me.

    I see some old forum acquaintances still posting and doing well. Gives me hope.

    Chatsworthgirl

  • bloomingdalechik
    bloomingdalechik Member Posts: 7
    edited March 2017
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    Mets out the gate, and just passed two years and turned 40 years old. Back to normal life again, well as normal as this life can be. All of your feelings are so valid, and you have all of us who understand. You are not alone, Lena.