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Stage 4 TNBC NED or Remission

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  • Homehelp
    Homehelp Member Posts: 64
    edited November 2015
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    First of all I want to wish everybody a happy thanksgiving
    May we all celebrate many more!

    A question or two
    If someone is NED does chemo go on forever ?
    Is there a maintenance ?

    Also what scans are the most sensitive ?
    PET vs CT with contrast and bone scans ?

    I suspect different MO prefer different studies and false positives and negatives vary with the studies

    Thank you
  • lotusblossom
    lotusblossom Member Posts: 21
    edited November 2015
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    Homehelp,

    I have been NED and without any type of treatment for 21 months. My onc says there is no maintenance chemo for TN.

    In my case, we use PET because it is able to distinguish between active disease and calcified tumors better than CT.

    Hope that helps!

    Lotusblossom

  • RosePenny
    RosePenny Member Posts: 18
    edited December 2015
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    Hi, I am popping in to say that I have had my latest CT scan. I am still showing ned. That makes 32 months. Very blessed. Everything I read about triple negative stage 4..... well, I am blessed. Still here. Still having quality of life.

    I hope this gives hope to others.

    hugs Rose

  • annieoakley
    annieoakley Member Posts: 653
    edited December 2015
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    Rose, that is awesome news. I am so happy for you. Praying for NED to be with you forecer

  • ksmatthews
    ksmatthews Member Posts: 743
    edited February 2016
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    Hey Shekarpcs, what chemo did they use?  I was just dx with mets to lungs and bones.  Start abraxane tomorrow!

  • RosePenny
    RosePenny Member Posts: 18
    edited June 2016
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    Dropping in to say that I have hit the three year mark of showing NED! TNBC and I have been showing clear for three years! So so amazed and feeling blessed.

    hugs Rose

  • 50sgirl
    50sgirl Member Posts: 2,071
    edited June 2016
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    Rose, WOOHOO! Congratulations for hitting that three year milestone. I hope you celebrate many more years of showing NED.

    Lynne

  • rosselle
    rosselle Member Posts: 4
    edited September 2016
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    bumping for more inspiration Happy

  • hydeskate
    hydeskate Member Posts: 45
    edited November 2016
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    I was dx in 2008 at 29 with Stage IV TNBC (lump was found in Dec 2007) it had spread to my lungs and liver. I had Chemo Abraxane, then Red Devil. that Christmas I got my first NED scan. I was granted permission to get a BMX followed by radaition and for the heck of is (I was still NED) took abraxane again but since I had no side effects the Pharmacist keep increase the dosage to see how much I could take before having side effects I made it half way thru before they leveled it off. I finished my last Chemo in October 2009. I haven't had any treatement for my Cancer but I was dx with an autoimmune disorder that became very apparent after my immune system came back online called Sjogren's Syndrome. I have to take a lot of meds to attempt to keep it under control included Methotrexate which is very low dose used to treat my Sjogren's. If my math is right its something like 8 years NED.

  • Winters74
    Winters74 Member Posts: 8
    edited January 2017
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    Rose Penny How are you doing?what type of chemo and treatments have you used? Anything currently? Just diagnosed last month with stage 4 tnbc. Really scared! I have a daughter raise!

  • Winters74
    Winters74 Member Posts: 8
    edited January 2017
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    how are you doing now? I was recently diagnosed with stage 4 tnbc. Scared to death but I want to fight with everything I got!!!

  • Winters74
    Winters74 Member Posts: 8
    edited January 2017
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    I would love to hear more NED stories. Please share!!

  • Wiegp22
    Wiegp22 Member Posts: 167
    edited January 2017
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    what did you do to get Ned

  • Wiegp22
    Wiegp22 Member Posts: 167
    edited January 2017
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    I thought in stage 4 they didn't do surgery only thx with chemo

  • RosePenny
    RosePenny Member Posts: 18
    edited January 2017
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    Hi Everyone

    I am still showing ned as of my last scan in December 2016. That makes 3 and a half years, since my metastatic cancer diagnosis. (My original diagnosis was in 2011. That is when I had my surgery, chemo and radiation). Having triple negative, my oncologist and I decided to treat my spread by having my lung met removed. I had the entire lower right lobe removed. No chemo afterwards, my doctor and I both felt that we would wait until something changes before we bring out the big chemo guns again. I have an oncologist that looks at it that my cancer is on a maintenance program. Until it shows up again, nothing overtly medical is being done. Once it rears its head, we will go after it again. My preference is surgery, radiation and chemo last. That is my comfort level and preference. Others have preferred to do a different order, and it has worked for them. I am not the only person showing ned that I know. The problem for others searching for those with disease in remission is that most aren't that active on the boards. Life gets busy, and thinking of cancer becomes very far off in the background, except around scan time.You never forget, but try not to think about it on a regular basis. At least I don't and I have been told others react the same way.

    As for how I got to show as ned, I eat a Mediterranean diet, take a multivitamin and fish oil caplets each day. I put turmeric and pepper on every food that I can. Spices I use all the time, but rarely salt and only sea salt. I avoid stress, go to bed around the same time and wake on my own. Find as many moments of pure joy during the day as I can. Try to practice living in the moment. Plan for tomorrow, but live for today. Once your plans are made, put them aside and enjoy yourself. Laugh. No point in living for 10 or 20 years if you spend the time depressed and waiting to die. I am here, and I am going to enjoy each day I am blessed with. I am a glass is full kind of girl, and if someone gives me one half full, I will find the tap!


    hugs Rose

  • Winters74
    Winters74 Member Posts: 8
    edited February 2017
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    I see it has been awhile since anyone has posted here but wanted to see how everyone is doing

  • Pagej
    Pagej Member Posts: 42
    edited June 2017
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    hi this thread is amazing. I am tnbc stage 4 solitary brain met treated over a year ago. No mets in body that can be seen (I like to think they aren't there at all) No current treatment since except my maintenance scans. NED since brain radiation going on 2 years now.

    Was just cyber bullied on online group where I was told I am terminal no matter what by another mbc. But no doctors have ever said that to me and I don't believe it- maybe next scan will prove otherwise but for now I'm stage 4 in remission again and healthy and happy. There can be sun in a dark storm. Staying positive is key for me

  • Pagej
    Pagej Member Posts: 42
    edited June 2017
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    Rose-your story is full of hope! I had solitary brain met and SRS over a year ago.TNBC as well. So far still in remission or NEAD, 1+ yr and counting 😁 It's mind blowing. I feel like a unicorn in medical world. I have had women bully me, saying your not in remission your terminal. But my doctors say the curative intent is there for me at this present moment. To get me to 5 yrs out from original dx will be great. Two more to go.

  • Unknown
    edited July 2017
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    PageJ, I hate to hear that you were cyber bullied. I was just diagnosed with stage IV with some malignant nodules in lymph node and both lungs. I just started chemo again. I have renewed faith and been saturating my mind with the Word of God and His healing promises that are ignited through faith. I do not search out statistics but only survivor stories. I plan to have survivor news to share. To everyone, please continue to share your survivor stories. It gives us all hope. Hope gives us faith. Love to you all.

  • moderators
    moderators Posts: 8,055
    edited July 2017
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    Survivandhealing-

    We want to welcome you to our community! We hope these stories inspire hope for members like you, and we wish you luck with your treatment! Sending so many positive vibes!

    The Mods

  • RosePenny
    RosePenny Member Posts: 18
    edited July 2017
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    Hi everyone, I wanted to pop in and say hi. I had my 6 month scan, still showing ned. Very blessed and full of gratitude. This makes my fourth year since my spread, and 6 since my original diagnosis. I did not expect this, having read up on the stats on having Triple Negative Breast Cancer. Keep hoping, you don't know what is around the corner. I have always thought that living in fear is not really living. I could have wasted the blessing of the past four years if I let my fear rule. Every day you have can be either filled with moments of joy or fear. I choose joy as often as I can (not possible all the time, but it is a goal). One of my inspirations is a close relative, more like a sister really, that was told her heart condition would prevent her reaching her 60s..In her thirty's she faced this and had to go through a lot of grief counselling to try to cope. Her 70th birthday is fast approaching!! How much life enjoyment would she have lost, if she hadn't decided to set fear aside and live each day to the fullest. No one has an expiration date, and doctors give you their best GUESS.. It is an art form when dealing with fatal illnesses. Obviously, they are not always right.

    I am praying for each of you and hope that all get the joy of dancing with Ned.


    Hugs Rose

  • erinr28
    erinr28 Member Posts: 5
    edited September 2017
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    I have stage IV Triple Negative with lung METS since day one Aug 2016 from NS and I am Progression Free since finishing all my treatments with no flareups or spreading.

  • erinr28
    erinr28 Member Posts: 5
    edited September 2017
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    I am Progression Free; my Cancer has not flared up or spread since all my treatments. I am stage IV Triple Negative since day one of being diagnosed. Would love to talk more with you about your story.

  • LifeisGood2019
    LifeisGood2019 Member Posts: 1
    edited April 2019
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    Hi everyone,

    To everyone with remission, congratulations. And lots of positive vibes for everyone fighting this fight.

    My beautiful mom has TNBC, stage 4 with lymph node involvement and lesions in both lungs. Diagnosed on Feb 14, 2019. She did 3 rounds of FEC chemo (every 3 weeks). Then a pet scan and mri revealed that cancer was shrinking with chemo but new lesions were seen in the brain. She is now undergoing 10 days of whole brain radiation. She will probably go back on 3 more rounds of FEC chemo. I am terrified but I am trying to keep the faith. Mom has been so strong through all this. I want to be strong for her too. Any words of inspiration and/or success stories are welcome.🙏

  • Kkmay
    Kkmay Member Posts: 89
    edited April 2020
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    Great stories.. please share more

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,832
    edited April 2020
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    Kkmay,

    This thread has been dormant for over 2 years. There is an NED thread on the stage IV forum. Will try to find and post the link:

    Here you go. This thread is active.

    https://community.breastcancer.org/forum/8/topics/830627?page=44#post_5542695


  • Kkmay
    Kkmay Member Posts: 89
    edited April 2020
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    Thanks

  • Mritzz89
    Mritzz89 Member Posts: 1
    edited July 2021
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    I am am diagnosed with stage4-TNBC (mets to lung) on Feb-21 and currently havd 6 cycle of chemo (3 EC+ 3 Docetaxol) and after that CT scan is very positive result and no ovious tumour visible.

    NHS decided not to go for surgery (masectomy) and told that surgery is not required at the moment and check for recurrance.Doc said that it can recur in any body part and if recur there will be chemo. I am currently under follow-up and next 3 months CT scan is due on next 1-2 months.


  • RosePenny
    RosePenny Member Posts: 18
    edited July 2021
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    Hi

    I am popping in to say that I am still here. 8 years NED from TNBC stage 4. So far so good. I haven't had a ct scan for 2 years now, I got to the point where my doctor thought that having the scan would cause more harm than good. Still seeing my oncologist once a year. Scary but I tend to try to put heavy worrying out of my life.

    Living as well as possible under covid restrictions. Keep moving forward as best you can and find your moments of joy. My life would have sucked for the last 8 years if I hadn't done that! Don't waste the gift of each day!

    hugs RosePenny


  • norcals
    norcals Member Posts: 206
    edited July 2021
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    RosePenny,

    Congratulations and thanks for checking in. It’s so encouraging to hear that you’re doing well. Again, thanks for letting us know