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HER2 Positive-anyone 10 years out?

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  • minustwo
    minustwo Member Posts: 13,100
    edited January 2022
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    Margun - I answered on another thread that I believe you should call your doc. You have not entered your diagnosis & treatment and made it public - and that would help.

    I'm only 7 years out but doing great.

  • margun
    margun Member Posts: 385
    edited January 2022
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    I was diagnosed January 2019 with triple positive ductal grade 3 1.5 Cm tumor no positive nodes. Chimio ac &taxol then goldilocks mastectomy. Since October 2019 on Letrozole. After bc my wbc and rbc was always borderline low but the latest was even lower than the normal range 4 wbc and 3.88rbc. Someone told me that letrozole can reduce wbc. I prefer that from recurrence but it is not still a good sign I think. My doc appointment is in 8 days. I hope by then I hear your opinions. Thanks

  • bcbarbie10
    bcbarbie10 Member Posts: 148
    edited February 2022
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    Dropping by to say I will be 10 years out in March!

    Hang in there, ladies, we got this!

    To God be the glory

  • Ksamuels6721
    Ksamuels6721 Member Posts: 1
    edited February 2022
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    💪🏽❤️🙌🏼U just made my day

  • cowgirl13
    cowgirl13 Member Posts: 774
    edited February 2022
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    13 years out in May!

  • specialk
    specialk Member Posts: 9,226
    edited February 2022
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    cowgirl and bcbarbie - yay!

  • slousha
    slousha Member Posts: 181
    edited March 2022
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    I'm joining! Completed active treatment in November 2010, when my first granddaughter was born. So we celebrate together.

    All the best to all ladies, stay brave, take advantage of every day!

    Usha

  • Kattis894
    Kattis894 Member Posts: 150
    edited April 2022
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    I use to love these posts so hopefully I can give back with some hope to those in treatment at this time. I am still cancer free. Considering the large beast I had to deal with I am so content and happy I am still going strong with no recurrences so far.

  • septembersong
    septembersong Member Posts: 153
    edited May 2022
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    I'm now 14 years out from a diagnosis of HER2+ BC. Healthy, happy, and grateful for the life I'm able to live. Sending empathy and encouragement to anyone dealing with this difficult diagnosis.


  • lkc
    lkc Member Posts: 180
    edited June 2022
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    17 years ! living life large after a stage 3C ER/PR neg/HER pos Dx. Blessed!

  • lkc
    lkc Member Posts: 180
    edited June 2022
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    17 years ! living life large after a stage 3C ER/PR neg/HER pos Dx. Blessed!

  • artierae
    artierae Member Posts: 1
    edited June 2022
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    I am presently age 79, with triple positive, stage 4 MBC...began first chemo treatments in 2011, double mastectomy plus removal of 13 lymph nodes, had reconstruction in 2012...Right now I'm on ENHERTU for HER 2+...no longer responsive to estrogen blockers...Oncologist said HER 2 is likely what has been driving new lesions. Have had gamma knife for brain mets (6 different times)...and stereotactic radio surgery for various lesions throughout my body.

    Herceptin caused near heart failure, I was unable to breathe when infused only once with Perjeta so that was immediately stopped... Kadcyla caused near liver failure...Finding a drug that works to control new lesions without causing organ failure has been a very challenging issue. I'm currently on ENHERTU for the past 12 weeks...downside to that drug is lung damage. Side effects usually don't usually happen early on...generally it takes many rounds of treatment before I become severely reactive. I'm hoping I can remain tolerant of this drug. I notice way more side effects from this treatment than with all other HER 2 drugs...digestive problems, poor appetite...feeling tired....Still, I'm still here!


  • mistyeyes
    mistyeyes Member Posts: 570
    edited June 2022
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    Artierae - You have gone through a lot. There are so many studies going on, I hope they find a medication that can help you. This is such a problem when the treatment you get for your cancer is hurting your health in other ways. I hope you can continue with the enhertu without any serious side effects and you can get some help with the side effects that you are having.


  • denny123
    denny123 Member Posts: 1,462
    edited July 2022
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    I don't know when I posted last here. I am at 20 years and 7 months of Stage 4 MBC de novo. Fun times...

  • mistyeyes
    mistyeyes Member Posts: 570
    edited July 2022
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    denny123- My heart cries for you. 20 years old is so young to face all of this, but it certainly is not a fair disease. I hope you handle the treatments well, tell your doctor about any side effects from the treatments-they can help with a lot of them. A lot of people here can also help because they have experienced it and share what helped them. You might want to check out some of the other topics, they also have some that are for stage 4 only.

    Also, here is a great place to vent...about anything!



  • denny123
    denny123 Member Posts: 1,462
    edited July 2022
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    Misty-oops, I guess that I mislead you! I am a survivor of 20 years and 7 months of MBC de novo. I am 73.

    Thanks for your concern, but I am doing well, considering.

  • mistyeyes
    mistyeyes Member Posts: 570
    edited July 2022
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    denny123 - sometimes when I read late at night, my brain doesn't always process things right (LOL). When I reread your post it is really quite clear.

    I am glad you are doing well.

  • ruthbru
    ruthbru Member Posts: 46,983
    edited July 2022
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    One of my best friends was diagnosed in 2016 with HER2 Positive BC. She is still going strong; in fact, she just got back from a hiking trip to Iceland.

  • cathleenc
    cathleenc Member Posts: 2
    edited July 2022
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    Celebrating 10 years with a recently clear PET that says "no evidence of metastatic disease" - WOOHOO!!! It's so surreal because I am also BALD AGAIN due to Alopecia Arreata! At least when I was going through chemo, I had a reason for being bald..., it currently seems to be a side effect of the COVID vaccinations. Since I had the shots, I am obviously a believer of the vaccine so please don't be offended by the correlation. It's just dumb-founding!!!

  • mistyeyes
    mistyeyes Member Posts: 570
    edited July 2022
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    I was diagnosed in 2016 and am doing great.

  • denny123
    denny123 Member Posts: 1,462
    edited July 2022
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    Thanks Mistyeyes! I am also guilty of mis-reading. Good luck to you!

  • mender
    mender Member Posts: 3
    edited August 2022
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    Hi., I have a question. I’m new here.

    II finished Herceptine June 7 th

    I was diagnosed 11/20, surgery 5/21.

    What would be my anniversary date to figure out my survival years.

    Thanks very much


  • mistyeyes
    mistyeyes Member Posts: 570
    edited August 2022
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    Mender - I am never sure how to do the dates either. If I go to the date I was diagnosed in Nov 2016 - it puts me at 5 years, so I like that date.

  • melbo
    melbo Member Posts: 266
    edited August 2022
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    I just asked my surgeon this at my check up this week and was told they count from the date of the surgery. Of course I see my medical oncologist in a few weeks and I suspect she might say from the date of the final treatment of herceptin/Perjeta — but who knows.

  • specialk
    specialk Member Posts: 9,226
    edited August 2022
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    I have always used the surgery date because that is the date of the removal of all known cancer.

  • kathleen1966
    kathleen1966 Member Posts: 67
    edited September 2022
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    it has been 12 years for me now. Locally advanced, Numerous tumors, 4 lymph nodes positive, pagets disease on the nipple, vascular invasion present,Stage IIIA.

  • loveofmyboys
    loveofmyboys Member Posts: 5
    edited September 2022
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    Congrats on being 12 years out!!Gives me hope. I too am Stage 3A. I have my surgery October 24th. I have a lobular with multiple tumors as well. Erpr-. How are you feeling?

  • specialk
    specialk Member Posts: 9,226
    edited September 2022
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    I was diagnosed 12 years ago today - 2.6cm tumor, two pos nodes, much surgical complication, bi-lateral lymphedema, some other lasting odds and ends. Still here and grateful every day!

  • kathleen1966
    kathleen1966 Member Posts: 67
    edited October 2022
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    loveofmyboys, I feel good. I usually forget my yearly anniversaries now. I worried like everyone, especially the first 3-5 years. I still worry but it’s in the back of my mind. I know it could come back at any time and I feel that I am just lucky. I don’t forget that women are living with breast cancer daily and getting diagnosed daily. Thanks for asking

  • LisaH
    LisaH Member Posts: 16
    edited October 2022
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    Just stopped by to say hello! November 6, 2022 will be my 20 year milestone.

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