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Stage 4 TNBC NED or Remission

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RosePenny
RosePenny Member Posts: 18

SmileGreetings everyone, 

I just wanted to know if there are any long term members who are NED or in Remission with TNBC. I was originally diagnosed with stage 3a triple neg. 4 lymph nodes cancerous in 2011. Treatment (Double mast., chemo and radiation) ended in March 2012. Found out I was stage 4 with a  lung met in January 2013, surgery in April 2013. I had no other treatment at that time than the lobectomy. So far so good, I am showing Ned on my CT scan as of May 2014. I wanted to share that Ned can come with TNBC, and to also find out if there are any long term members who are also showing Ned with TNBC.

hugs Rose

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  • DeliriumPie
    DeliriumPie Member Posts: 1,186
    edited May 2014
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    hi Rose. I am not a long timer (just yet, I hope), but I would love to see some response from people who are. Your post really struck me though because you are the first person I have seen with a similar story to mine. I was dx with lung mets this march, although we now know that they were there since original dx of IIb. I had wedge resection in two areas of the same lung at the end of March.  I get the results of my first post op CT on the 26th. I am so anxious and also paranoid that even if this is clear, I will still be expecting it to pop up between scans. My BS did tell me a story of one of her patients who was TN and had a singular lung nodule removed. The last time she heard from her, she was 13 years out and still NED. So that was encouraging but I would love to see some other examples!

  • embmom
    embmom Member Posts: 10
    edited May 2014
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    I was originally diagnosed in 2008 w/ triple neg. stage 3 with a 6 cm tumor.  No nodes.  Did taxotere and carboplatin, rads and a mast. I was great for 4 years.  Then in May 25, 2012 I had a seizure and was found to have a single brain met.  That was removed with surgery and I did 3 sessions of sterotactic radiation.  Since then I have been clear.  My oncologist said that a single met is a little different than other situations.  He has also said that brain mets are different from other soft tissue mets. I fully expected to live about a year when I was first diagnosed..I have had 3 people I know with brain mets and triple negative die within about a year...I think the difference is having just one met. I just keep going...we are doing scans about every 6 moths now after a 3 month schedule the first year.  Who knows what the future brings?   Good health to us all!

  • RosePenny
    RosePenny Member Posts: 18
    edited May 2014
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    Here is one of a couple of articles I have found on Oligometastasis, which gives me hope.... 


    https://ludwigcenter.sites.uchicago.edu/page/ludwig-center-metastasis-research-oligometastasis-curative-subset-metastatic-disease-0

    hugs Rose

  • lotusblossom
    lotusblossom Member Posts: 21
    edited May 2014
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    Hi Rose,

    I am stage IV TN. I was diagnosed at the get-go at stage IV in 2009. I had mets to lungs, spleen, biliary tract, bones, nodes.....and the list goes on.

    I have been NED since end of February, confirmed by PET scan in April.

    Yes, we can beat the statistics!

    Lotusblossom

  • SophieJean
    SophieJean Member Posts: 38
    edited May 2014
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    Saw a expert onc panel present on recurrance issues in triple neg. women who meet up with PCR. (We'll pretend he's a rapper). PCR  means pathologically complete response - means that biopsy shows no cancer or surgeon got clean margins. Ct & pet scans after chemo are only so reliable - 60% of NED tumours tested in one study still had micro mets and surprisingly 20% of Stable boy tumours were actually necrotic dead. So scans are only so so accurate. Interesting study showed the liver changes with chemo is what makes the scan pics hard and harder to read.....also if you've done lots of chemo fatty liver deposits make the view crazy.

    If PCR though and it does not reoccur by year 2 chance of recurrance drops rapidly for triple neg ladies. Not so sure in folk like me who are hormone resistent would be included nor if braca ladies would. So claimed the expert onc panel.this likely applies best to stg 4 from the start ( low cell diversity, chemo sensitivity) but more not known than known

    And just as an aside really aggressive cancers can be in any type ( grade 3). How dangerous the cancer is depends on its sensitivity to drugs mostly so very very aggressive er+ Might  be stopped and made dormant as can her+ With the correct drugs. But any kind of cancer not responding to treatment that is grade 3 will move at a supercharged speed.

    When I wake up from chemo dreams will post the studies/ talk if I can find again.

    Best

    Sophie


  • cheery
    cheery Member Posts: 23
    edited May 2014
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    Sophie 

    Thanks for your informative sharing, as always:) 

    Take care and best regards

  • RosePenny
    RosePenny Member Posts: 18
    edited February 2015
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    Hi everyone

    I wanted to pop in and give an update. I had my last scan in Nov. 2014. and came back as still ned. That made it 18 months ned. So far so good... so there is hope. I only plan things in 6 month blocks and am living, enjoying life. My next scan is in May 2015


    hugs Rose

  • WinningSoFar
    WinningSoFar Member Posts: 126
    edited February 2015
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    Just to add another stage IV, triple negative. I've been NED now for 6 months and my next scan is March, 2015. In Sept. 2015, I'll be 4 years from dx.

  • lotusblossom
    lotusblossom Member Posts: 21
    edited February 2015
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    Also popping in to let you all know I have been NED for 12 months now, with no treatment. I was diagnosed with extensive mets in June 2009.

  • grahaad1
    grahaad1 Member Posts: 14
    edited February 2015
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    Thanks for sharing these stories! I was just diagnosed as TN Stage IV with a single lung met 2 weeks ago and am terrified. Your stories give me some hope!

  • hydeskate
    hydeskate Member Posts: 45
    edited February 2015
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    I was dx with Triple Negative Stage IV the beginning of 2008 (lump found Dec 2007) mets to liver and lungs. I had chemo round 1 Abraxane, round 2 ac (aka Red Devil), double mastectomy, radiation, and another round of Abraxane. I had my first NED scan Dec 2008 and was still NED in Oct 2009 when I was granted a chemo holiday that was suppose to be short lived. I am still on the Chemo Holiday though it has been a tough ride due to my immune system been jacked up when it came back online after been shut down for almost 2 years.

    I was dx with an autoimmune disorder called Sjogren's in 2010 which has been reaking havoc on my body. Looking back I had it before the cancer but it rarely flared until the cancer showed up. I am taking over a dozen pills all in attempt to control the attacks my immune system is throwing at different parts of my body, one of the drugs is funny enough an old chemo pill called Methotrexate which I take in low dose to control the inflammation. way lower then what would be used for cancer, lots of RA (Rheumatoid Arthritis) patients take this one. The doctors think the Sjogren's is somehow keeping the cancer in check, I am going on 6 years NED and 4 years off chemo

    I visit my Oncologist and Rheumatoligist every 3 months, and up until recently I was seeing the Eye doctor monthly it took a year to get my eyes straight I finally graduated to 6 month visits. I rotate every 3 months with CT Scan and X-rays and get blood work each time I visit.

  • RosePenny
    RosePenny Member Posts: 18
    edited June 2015
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    Popping in again to say that I have been showing ned now for two years. I have TNBC and had a full scan in May . There is hope.



    hugs Rose

  • annieoakley
    annieoakley Member Posts: 653
    edited June 2015
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    RosePenny, that is so great to hear! May you continue to be NED forever. Thanks for sharing your great news!

  • shutterbug73
    shutterbug73 Member Posts: 284
    edited June 2015
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    RosePenny - that is fantastic news! May you have many many more years of NED.

  • Lauralind5
    Lauralind5 Member Posts: 158
    edited June 2015
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    Thank you ladies, gives me hope !   I was originally diagnosed in April 2013 with TNBC finished up treatment at the end of 2013, then a single brain tumor in Dec 2014 treated with surgery and cyberknife radiation and then in Feb of 2015 had 2 mediastinal enlarged lymph nodes so started back on chemo.  I had clean scans in April, have a brain MRI this Friday.

    May all of us have many more years !


     

  • Catesmom
    Catesmom Member Posts: 45
    edited June 2015
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    Rosepenny, 2 years NED!!! That is fabulous. I am so happy for you!! Kelly
  • tiff1971
    tiff1971 Member Posts: 1
    edited July 2015
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    Hi everyone,

    I have enjoyed reading all your stories. May we all have many more years of continued success.

    I am in Brisbane, Australia. I was dx Triple Negative BC in October 2014. 8.4cm tumour to my right breast and 6 lymph nodes. I underwent a lumpectomy which unfortunately did not return clear margins and had a full mastectomy 7 days later with full lymph node removal. I was staged a minimum of 3 as there were possible lesions in my liver and right lower lung which were too small to accurately diagnose or biopsy at the time. I had 6 rounds of FEC-D chemo which knocked me around no end. My treatment finished in late April. A full comparison scan was done at this time which confirmed the lesions to my liver and lungs were completely gone. I was therefore Stage 4. On the bright side, I was also in remission with no disease detectable. One of the scariest things was just how quickly my cancer commenced and grew. When my baby boy was born (mid May 2014) I was completely cancer free. The next scans are in late August. I will take 3 monthly scans for 12 months and then they will be reassessed. My oncologist said I grew an 8+cm tumour in just 3 months. Mind blowing! I don't have an open minded oncologist, nor is she terribly positive whenever I see her (she has told me she is sure the cancer will return and rolls her eyes when I mention complimentary therapies or dietary changes). Great. So I have - as I'm sure we all have - embarked on extensive research in search of ways I may stop a reoccurrence. I have now undergone a radical lifestyle change which involves the complete elimination of sugar, meat and dairy. I eat huge amounts of green vegetables (less of the starchy ones), brown rice or quinoa, occasional organic bread, fruit and nuts and a variety of excellent, fully vegan products such as margarine, cheese etc. I have lost 16kg, have more energy and generally feel better than I have in years. Radical? Perhaps, but really I have nothing left to lose. My prognosis was bad and strangely I do not miss any of the 'bad' foods I had before. I have a second mastectomy booked for this time next week - recommended by my breast surgeon as a proactive measure - and feel confident things will be ok. I have a five year old daughter and a 14 month old son. Fingers crossed. Love and best of health to you all. Tiffany xx

  • moderators
    moderators Posts: 7,907
    edited July 2015
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    Tiff-

    We want to welcome you to our community here at BCO! We're so sorry for what brings you here, but we're glad you've found us, and hope you find the support you need during this time!

    The Mods

  • SpiritBlessing
    SpiritBlessing Member Posts: 552
    edited July 2015
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    Hi Ladies,

    Not sure if I have posted here before or not. I am a regular on another board for Christian women but I wanted to explore one that is specific to my type of cancer.

    Tiffany it sounds like we have very similar stories with regard to making radical changes. Diets sound very similar it I don't eat cheese or margarine. I am curious as to the green veggies with starch, maybe you can elaborate a bit more.

    I wish you well on your next surgery. Please come back and let us know how you are doing?

    I started a new study trial treatment today with a drug called Eribulin. It's for 3 weeks on and 1 week off. Went really well and so praying this one will put things really at bay. We'll have to get to bed chat soon. Have a blessed day all...Lucy

  • Texasrose53
    Texasrose53 Member Posts: 290
    edited September 2015
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    Rose..you and I have a very similar Cancer history. I was also 3A Triple Negative with 4 nodes out of 22 cancerous in September 2013. Survery, Chemo and Radiation completed in May 2014. Found out stage IV in April 2015 with 1.3 cm lung nodule and (6) .55 mm or less mets ((3) lungs, (1) sternum and (2) nodes). My first CT in July showed largest met shrinking in half....my next CT is next week with results on Friday Sept. 11th. Praying for more shrinkage!!

    Keep the updates coming Smile!! Your story of NED does give me a lot of hope!!

  • Lauralind5
    Lauralind5 Member Posts: 158
    edited September 2015
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    after brain Mets and lymph node Mets and after 5 months on various versions of taxol I am currently NED. 

  • Texasrose53
    Texasrose53 Member Posts: 290
    edited September 2015
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    Well....I get to join this group. Today I received the results from my CT....I am NED! Praise God! Hope I can hang out with ya'll for a long time

  • 50sgirl
    50sgirl Member Posts: 2,071
    edited September 2015
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    Lauralind and Texasrose. Congratulations to both of you. I hope you enjoy your NED status for a very long time.

    Lynne

  • Texasrose53
    Texasrose53 Member Posts: 290
    edited September 2015
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    Thank you 50sgirl! I hope we do too!!!!

  • Lauralind5
    Lauralind5 Member Posts: 158
    edited September 2015
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    TY 50sgirl me too !  

  • Rosieo
    Rosieo Member Posts: 200
    edited September 2015
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    Spirit

    Were you diagnosed with bc metastizied to another area.

    Texas Rose: My problem is similar to your as I have bc metastized to my lungs. 3.4 cm plus various smaller ones. So your words really are music to my ears.

    Laurle: Did you get your brain mets and lymph node mets "after" you chemo that you had in 2013

    Ladies,thank you for all your positive words. I am scheduled for Sept 29 for chemo. I still want to back out and I feel so good, I can't bring myself to take poison. I quess I would feel different if I was sick or in painand I am not. I feel sooooooooooooogood except for the anxiety coming from this problem and then I wonder what if I don't do anything until I would feel bad. Have you any of you had these thoughts.

    thanks again ladies. This group is a God send for me.

    Rosieo

  • Texasrose53
    Texasrose53 Member Posts: 290
    edited September 2015
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    Rosieo, I never hesitated. I wanted to fight as hard as I could! So I started chemo immediately after they put my port back in. Was afraid if I hesitated it would spread much further.

    That was my choice. I know of several who waited......

    You have to make your own decision....it is your body and your life!

    Julie

  • Lauralind5
    Lauralind5 Member Posts: 158
    edited September 2015
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    Rosieo yes. I was originally diagnosed in 2013 with a breast tumor and lymph node involvement. I had dense dose adriamycin/cytoxan and the dense dose taxol. I had surgery and 33 rads. In nov 2014 I was diagnosed with the brain mets then feb 2015 two lymph nodes in my chest showed up on routine scan. Ive been on chemo ever since that time. 

  • shekarpcs
    shekarpcs Member Posts: 1
    edited October 2015
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    This is great thread. It really gave lots of hopes. My sister Diagnosed with Stage IV TNBC with Lung, bone and liver mets. After 4 round of Chemo she is NED. Doctors were surprised with results. We met another doctors for second opinion and he suggested Surgery for primary tumor area as chemo results are really good. Primary doctor is against it. Trying to find out what is the best option. Surgery/No surgery. In confused world.


    Initially they said maximum 1 year. Now they say we can expect long survival.



  • Texasrose53
    Texasrose53 Member Posts: 290
    edited October 2015
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    Hey Shekarpcs...That is awesome that your sister is NED!! But you are asking about surgery. What are they going to surgically remove if she is NED? Also what Chemo was she on when she reached NED?