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Looking for Her2 Positive survivor stories

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  • LizA17
    LizA17 Member Posts: 102
    edited December 2016
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    4 yr survivor here! Best wishes for all!

  • MsBrompton
    MsBrompton Member Posts: 324
    edited December 2016
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    Jellybean59 you are nearly there, don't stop chemo (it's SOOOO hard doing the last bit but worth it to know you've had the dose).

    I'm only 18 months post diagnosis, but all clear so far.

  • Maya5
    Maya5 Member Posts: 1
    edited January 2017
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    Thanks for the encouraging post. I was just diagnosed with her 2. Start my treatment plan this week. Carboplatin, taxotere, herceptin, and pergeta. Surgery after 18 week chemo, then radiation therapy.

  • Maya15
    Maya15 Member Posts: 112
    edited January 2017
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    Hi Maya, fancy meeting another Maya with the same cancer and similar treatment plan!I was diagnosed a year ago, still going with the Herceptin/Perjeta. Pre-surgery chemo was very effective for me and wiped all the cancer out.

  • zjrosenthal
    zjrosenthal Member Posts: 1,541
    edited January 2017
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    Two clear mamo's since treatment. Getting my port out on Thursday. Love, Jean

  • Kkilpatr
    Kkilpatr Member Posts: 1
    edited January 2017
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    Thanks for sharing this. I'm worried about my sister. Stage III BC (Aggressive Invasive Ductile Carcinoma. Has had double mastectomy, chemo and radiation, two years later now, has in some lymph nodes and some lesions in bones, has started chemo again) Any success stories that might be similar to this?

  • MsBrompton
    MsBrompton Member Posts: 324
    edited January 2017
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    Kkilpatr sorry to hear your sister's story. You haven't given much information about the type of breast cancer she has. This thread is for HER+ (this means cancer that usually responds to Herceptin and Perjeta). I know one woman from this support community who was stage 4 and HER+ but is now 'no evidence of disease'. That's probably because her cancer was the kind that could be attacked by these powerful drugs. But the same drugs would not be effective if the cancer isn't HER+. I think HER+ cancer used to be thought of as a really bad one to have because it was very aggressive, but with the discovery of the new drugs (they're also known as "biologics"), it's become one of the most treatable, especially if you're unlucky enough to have it spread to the bones.

    But everyone is very different, so you have to be careful about searching for stories! (We all do it of course, that's why we're in here :-)).

    Saying a prayer for your loved one!


  • bluekoala
    bluekoala Member Posts: 73
    edited January 2017
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    Hey, just thought I would share with you that my grandmother not long ago passed the ten year marksince diagnosis: IDC low ER, very low PR, HER2+, I think stage 3.

  • fightergirl711
    fightergirl711 Member Posts: 190
    edited January 2017
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    Thanks BlueKoala!

    As someone with lowish PR, triple positive, stage III that's extremely welcome news! Congrats to your grandmother!

  • p1754
    p1754 Member Posts: 6
    edited January 2017
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    How are you doing.1/17

  • p1754
    p1754 Member Posts: 6
    edited January 2017
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    How are you doing.1/17

  • p1754
    p1754 Member Posts: 6
    edited January 2017
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    How are you 1/17

  • p1754
    p1754 Member Posts: 6
    edited January 2017
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    Are you ok Jan 2017.

  • p1754
    p1754 Member Posts: 6
    edited January 2017
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    How are you doing.

  • p1754
    p1754 Member Posts: 6
    edited January 2017
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    How are you doing. Amen

  • lago
    lago Member Posts: 11,653
    edited January 2017
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    I'm still here. 6+ years NED.

  • maryannecb
    maryannecb Member Posts: 74
    edited January 2017
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    Past 11 years for me..do all you can, treatment is tough but life is good again, hang in.

  • danix5
    danix5 Member Posts: 141
    edited January 2017
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    Newly redx'd. Current is after bilateral mastectomy and ooph/hyster in 2008.

    Surgery was Weds the 25th January. Biopsy path

    imageMy question is... as I wait for final path, do all with HER2 positive do chemo and Herceptin? My onco told me so far

    Radiation 6 weeks

    Herceptin every three weeks for a year

    And anti estrogen therapy for life.

    Why does it seem they just aren't dropping the bomb of chemo yet?

    I want facts not " oh we will tell her that later"

    I see many on here with no lymph involvement but chemo.

    My stage is 1 right now

    Thank you so much ladies

  • lala1
    lala1 Member Posts: 974
    edited January 2017
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    Danix5--My best friend had ER/PR- but HER+ and her doctor told her that he gives chemo to all HER+ patients along with Perjeta and Herceptin. And since you're ER+ they'll want you to do Tamoxifen or an AI as well

  • suemed8749
    suemed8749 Member Posts: 210
    edited January 2017
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    9 years since Stage 2 ER-/PR- Her2+ diagnosis. Doing well - life is good!


  • danix5
    danix5 Member Posts: 141
    edited January 2017
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    Thank you 💞

  • zjrosenthal
    zjrosenthal Member Posts: 1,541
    edited January 2017
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    Any positive survivor stories from those with extensive node involvement? When I had the axillary dissection they found many positive nodes, about 20 I think. Love, Jean

  • lkc
    lkc Member Posts: 180
    edited February 2017
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    me..... 12 positive nodes out of 14. Axilla and sentinel nodes totally replaced by tumor, extensive lymph , and vascular invasion, ducts lobes nipples affected, Her 2 positive AND no clear margins after final surgery.That was almost 12 years ago, and I am well and thankful every day.

    There are others out there, with similar stories to me, but they are busy living there lives beyond BC. We keep in touch

    My verybest to all those who are going through these early days. They are hard, but our will get through it!

  • zjrosenthal
    zjrosenthal Member Posts: 1,541
    edited February 2017
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    ILC thanks so much for the encouragement. It means a lot. Love, Jean

  • fightergirl711
    fightergirl711 Member Posts: 190
    edited February 2017
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    danix5 I am so sorry you are going through this again. I'd definitely be asking about chemo too.

    You may want to ask about Taxol + Herceptin AND Perjeta (this article doesn't reference Perjeta, but it is indeed administered with Herceptin.)

    http://www.breastcancer.org/research-news/hercepti...

  • rebzamy
    rebzamy Member Posts: 49
    edited February 2017
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    Diagnosed June 2007 at 31 years old. Have just had my six-monthly check up and all good. I hope this gives you some hope. I had chemo, Herceptin, rads, double mastectomy and reconstruction. Can't believe it's almost 10 years ago now!

  • momasheila
    momasheila Member Posts: 1
    edited February 2017
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    Hi I am new to this blog although I was diagnosed a year ago. I have stage 3 her2 pos breast cancer. I have been on herceptin next week being #13. I am also on xgeva every 4 weeks. my tumor shrank from 8cm to 2.5 cnms. then there was a small difference of 9 mm. my onc sent me to a radiation therapist who suggests that I do not take the radiation but to continue with what we were doing since it seemed to be working. he says with that small amount of growth that radiation would do more harm than good. I go see my oncologist today to see what he says. also it seems as if ill be on Herceptin till it stops working. the cancer had spread to my lower back but is now gone too. would anyone know why I am not being suggested any kind of surgery? any help, info experiences would be so helpful. thanx in advance.

  • moderators
    moderators Posts: 8,196
    edited February 2017
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    Dear momasheila,

    Welcome to the community. We are so glad that you reached out here. We hope that you will find support and information to help you with your diagnosis and treatment. If you do not get any responses here, feel free to start a new topic in the HER 2 Forum. Let us know via PM if you need help navigating around the boards. Stay connected here as you can. Let us know how your Oncology Appointment goes today?

    The MOds

  • AliceS
    AliceS Member Posts: 74
    edited February 2017
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    Does anyone know anything about the following breast cancer prognosis sites? I've looked on Adjuvant! adjuvantonline.com  AND  lifemath.net/cancer/breastcancer/therapy/index.php

    The sites are interesting-- the stats seem to be more positive than others I've seen. Would love to have comments from someone who can interpret better than I can.

  • Mitch
    Mitch Member Posts: 4
    edited February 2017
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    For all those Her2 Positives out there - have just this week reached my 12 years NED and am every so grateful. Have seen my daugher's 21st, her engagement, her wedding and now she is pregnant I'm a grandma. Make the most of each day. Best wishes to you all - stay strong.

    This site helped me and I return regularly to keep updated.