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Looking for Her2 Positive survivor stories

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  • Pipandor
    Pipandor Member Posts: 130
    edited June 2017
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    • That's great NWArtlady! Thanks for posting. What was your diagnosis?
  • Subroo
    Subroo Member Posts: 1
    edited June 2017
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    My daughter has HER2 positive breast cancer and there has been no good news until I found this blog. Thank you for giving me hope. There are sites for women whose mothers have BC but I have yet to find one that is for mothers whose daughter has BC. There is a need

  • moderators
    moderators Posts: 8,287
    edited June 2017
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    Welcome, Subroo! We can't imagine how hard it is to watch your child go through this. We hope you find support here! We also have a thread for families and caregivers that you might find helpful: https://community.breastcancer.org/forum/16

    The Mods

  • pinkest
    pinkest Member Posts: 32
    edited June 2017
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    Hello ladies,

    Still going strong after 12.5 years. Always thinking of my sisters in this battle, hoping every single one of us gets to celebrate good health year after year, for a long time.

    Looking back at cancer as an incredibly tough time in my life, fully determined to continue to move forward with gratitude each and every day, just the way we are all meant to do.

    Love and healing thoughts,

    ~Esther

  • Here4support
    Here4support Member Posts: 7
    edited June 2017
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    That's amazing Esther. Congratulations!!

    Your story brings hope and positivity. My mom has just started out her battle. We all are so scared. I've even stopped googling. Google is a scary place to be for newly diagnosed people.

  • bbwithbc45
    bbwithbc45 Member Posts: 367
    edited June 2017
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    Esther, Awesome news. Thank you for sharing with us. I find these stories helpful, especially each time I have some new and persisting ache, nausea, pain, etc. (I tend to panic a little).


  • minustwo
    minustwo Member Posts: 13,197
    edited June 2017
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    Pipandor - It was my understanding that a line is your arm is a "picc line" and not a port. A port is usually up on your chest and has to be put in during a surgery when you are under full anesthesia. It's been my experience that it's much harder to care for a picc line & it's much easier to get an infection.

    I too kept my port for 3 years. Never bothered me a minute, but I had drawn my bra/camisole line on my chest w/a Sharpie before the surgery & requested the doc to place it so the strap wouldn't rub or the port wouldn't show. Turns out I got LE, so I was thrilled to have the port there for blood draws.

    Oh - and by the way - ER/PR negative, HER2 posltive. NED for 4 years.

  • Kattis894
    Kattis894 Member Posts: 150
    edited June 2017
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    I year and no cancer found...a miracle considering the size of mine...I can not even believe I am posting on this thread...I certainly red it a lot this past year...

  • Pipandor
    Pipandor Member Posts: 130
    edited June 2017
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    Minustwo, many happy returns on the NED. Looks like Herceptin worked wonders for you.

    I had the purple port-a-cath.

    http://www.bardaccess.com/products/ports/powerport

    It was surgically inserted under the skin of my right upper arm. I know one lady who has had one for years without problem but in me unfortunately, fibristin formed around the catheter and partially blocked my subclavicular vein so it had to be removed. I had to inject Fragmin daily for six months because of the risk of a clot and embolism and it left an ugly hole and scar in my arm. No biggy though. I'm alive and well :)

  • zjrosenthal
    zjrosenthal Member Posts: 1,541
    edited June 2017
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    Going for my 3 yr mamo in August. So far clear! Love, Jean

  • caterina0611
    caterina0611 Member Posts: 2
    edited June 2017
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    I was diagnosed in June of 2012. I'm still going strong and feeling great! Keep your wits about you, eat healthy, stay active... you'll get there!

  • Here4support
    Here4support Member Posts: 7
    edited June 2017
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    Congratulations Jean

    Caterina0611- Congratulations to you tooand I wish you many many years of good health ahead.

    If I may ask, what was your diagnosis and treatment plan and other associated things. The profile you see below is my mum's and I'm here for her.

    Thank you


  • tara17
    tara17 Member Posts: 150
    edited June 2017
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    here4support --- thats so nice for you to be here as support for your mom. One of the most inspiring survivor stories i have heard about is that of Barbara bradfield ( google her) -- she was one of the original ladies on the original phase 1 trial for herceptin run by dr Salmon . She had stage IV disease with lumps in her neck and several masss --after the first dose of herceptin her neck mass started to shrink--fast forward 25 years and she is alive today , cancer free! It is so inspiring to keep this in mind and believe in the power of herceptin

  • minustwo
    minustwo Member Posts: 13,197
    edited June 2017
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    Pipandor - thanks for the link. I didn't know they put power ports in an arm. I learn something new every day.

  • MsBrompton
    MsBrompton Member Posts: 324
    edited July 2017
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    Two years ago I found this thread and it was SUCH an important source of comfort for me.

    Today I had my two-year check, No Evidence of Disease (NED)!!!!

    Thanks to all the ladies who come back after so many years to drop a quick posting. You know how much it means to newly-diagnosed HER+'s.

  • lkc
    lkc Member Posts: 182
    edited July 2017
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    12 plus years for me stage III, really crappy odds given back then. Alive, well and doing the happy dance every blessed day.


  • girlstrong
    girlstrong Member Posts: 299
    edited July 2017
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    This month I celebrate 4 years since diagnosis!!!! Doing well and so happy. Forever changed and forever thankful. Love to all of you, keep fighting and living each day ...it's truly a gift.

  • mistyeyes
    mistyeyes Member Posts: 573
    edited July 2017
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    lkc & girlstrong -your posts made me smile and lifted my mood for the day! Thanks for the ray of hope you share.


  • Cwhitney
    Cwhitney Member Posts: 42
    edited July 2017
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    ikc and girlstrong, thank you for your post. I just finished Herceptin a month ago and I'm a 14 months out. Your stories are all inspiring and help us newbies!

  • LibraGirl10
    LibraGirl10 Member Posts: 3
    edited July 2017
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    I am 2 years out- despiteextremely large tumor and 7 nodes positive. Poor response to chemo/perjeta/herceptin, with most of tumor still alive at surgery.

    No recurrence detected yet. My onc doesn't do scans unless there's a symptom.

  • evergreen9
    evergreen9 Member Posts: 25
    edited July 2017
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    I check in about once a year on breastcancer.org forum in order to share my progress. I was diagnosed in November 2010, had chemo and radiation, and completed herceptin in the spring of 2012. I think my stats will show below as being stage 3A with many lymph nodes involved. My most recent mammogram was clear and I am feeling good. I am still exercising at least every other day at the gym with a girlfriend, and I'm physically active in the garden as well. I try to eat well, I drink sencha green tea several times a day. I never dreamed I would still be here (age 71), and so I am writing this in order to share and inspire hope in those who are in treatment right now.

  • suburbs
    suburbs Member Posts: 398
    edited July 2017
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    evergreen9, bravo! Please keep those cards and letters coming.

  • Kattis894
    Kattis894 Member Posts: 150
    edited July 2017
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    Beyond grateful for this thread...and LibraGirl...your post gave me so much hope...my cancer was also active after the operation...that has been a worry...I am one year and so far NED...the onc said one more year to go before I go into the regular group of "survival" ....I am triple positive...thanks all for posting...

  • __asher__
    __asher__ Member Posts: 106
    edited July 2017
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    I'm so happy to see all these amazing stories. I had recently read something about increase in re occurrence after the 5 year mark because so many come off the Tamox/AI's. I like to see this board prove that's not always the case. Thanks!

  • katykaty
    katykaty Member Posts: 18
    edited July 2017
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    Hi everyone - I can't tell you how grateful I am to have found this thread. I was diagnosed in December last year and am currently in the radiation phase after neoadjuvent treatment and surgery. I didn't have a complete response to the chemo - there was some residual cancer left in the breast and 1 node. It was also confirmed that I was now ER - after having weak + results from the biopsy. My regular oncologist, who has been wonderful, was on leave and his replacement basically told me that with my results it was a matter of if and not when I metastasised, and that, with luck I might be able to manage it as a chronic disease. She also recommended I have genetic testing as I have a 22 year old daughter and start on Xeloda straight away. I have had two maternal aunts who have had breast cancer - one 30 years ago who is now 83 and can't recall what "type" she had, and one last year at 76 with a small lump requiring removal and only radiation. Both have daughters older than me (I'm 52) who have not had BC at all. My Breast surgeon was quite positive after the surgery and told me the radiation would be a "mop up" rather than something we were hanging our hat on. My regular oncologist came back and doesn't seem to think I need to go down the genetic testing route or to take Xeloda (which he said might have been considered had I been triple negative but not at the moment with my HER2 status).

    I have been a bit beside myself vacillating between the two opinions and wanting very much to believe the more positive. On top of everything else my brother has been diagnosed with a Stage 4 brain cancer and this has added to my stress and worry.

    I am so very grateful to read some of the success stories here and for those of you who have taken the time to tell them to put minds such as mine a little bit more at ease. I'm not sure how much at ease I will ever become at this point...

  • lkc
    lkc Member Posts: 182
    edited July 2017
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    hey Katy don't listen to the Onc. That you saw , when your Reg Onc was away. Honestly, can't believe that stuff.

    Anyway, I was dxed 12 plus yrs ago, stage IIIc, 12 nodes pos, blah, blah blah.

    I am blessedly fine and livin life way beyond the crap of BC.

    Take it day, by day, listen ONlY to positive stories of BC . There is no reason why you can't get through this and do the. Happy dance on the other side


  • katykaty
    katykaty Member Posts: 18
    edited August 2017
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    Thanks Linda - your posts in particular have been a lifeline to me...

  • jenny5
    jenny5 Member Posts: 4
    edited August 2017
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    I just got dx with the same dx as you but pr-

    Start chemo in 3 weeks

  • jenny5
    jenny5 Member Posts: 4
    edited August 2017
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    awesome!!!

  • mistyeyes
    mistyeyes Member Posts: 573
    edited August 2017
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    I love reading these. Every time my mind goes into its crazy mode with' stinkin thinkin' I come and read here. So glad that you all take the time to post after years-it means so much!