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HER2 Positive-anyone 10 years out?

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  • cowgirl13
    cowgirl13 Posts: 822
    edited February 2022

    13 years out in May!

  • specialk
    specialk Posts: 9,303
    edited February 2022

    cowgirl and bcbarbie - yay!

  • slousha
    slousha Posts: 181
    edited March 2022

    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 Posts: 150
    edited April 2022

    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 Posts: 153
    edited May 2022

    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 Posts: 186
    edited June 2022

    17 years ! living life large after a stage 3C ER/PR neg/HER pos Dx. Blessed!

  • lkc
    lkc Posts: 186
    edited June 2022

    17 years ! living life large after a stage 3C ER/PR neg/HER pos Dx. Blessed!

  • artierae
    artierae Posts: 1
    edited June 2022

    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 Posts: 586
    edited June 2022

    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 Posts: 1,773
    edited July 2022

    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 Posts: 586
    edited July 2022

    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 Posts: 1,773
    edited July 2022

    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 Posts: 586
    edited July 2022

    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 Posts: 49,865
    edited July 2022

    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 Posts: 2
    edited July 2022

    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 Posts: 586
    edited July 2022

    I was diagnosed in 2016 and am doing great.

  • denny123
    denny123 Posts: 1,773
    edited July 2022

    Thanks Mistyeyes! I am also guilty of mis-reading. Good luck to you!

  • mender
    mender Posts: 3
    edited August 2022

    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 Posts: 586
    edited August 2022

    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 Posts: 266
    edited August 2022

    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 Posts: 9,303
    edited August 2022

    I have always used the surgery date because that is the date of the removal of all known cancer.

  • kathleen1966
    kathleen1966 Posts: 70
    edited September 2022

    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 Posts: 5
    edited September 2022

    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 Posts: 9,303
    edited September 2022

    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 Posts: 70
    edited October 2022

    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 Posts: 16
    edited October 2022

    Just stopped by to say hello! November 6, 2022 will be my 20 year milestone.

  • mistyeyes
    mistyeyes Posts: 586
    edited October 2022

    Thanks for posting.


  • formydaughter
    formydaughter Posts: 121
    edited December 2022

    I’m 9 years out. Was declared “cured” after 5 yrs. Just got dx of recurrence. Triple positive. Either stage three or four pending pet scan results. I can’t believe this in part. But I was feeling that something wasn’t right. It’s on the same side as my first cancer despite bilateral mastectomy it came back This came with a simultaneous onset of diffuse, cutaneous, systemic sclerosis, also known as scleroderma. my scleroderma was triggered by the Covid vaccine booster. It is a type that commonly coincides with active malignancy. So we went to have a baseline scan to make sure all was good, and it was not. The Covid vaccine made my immune system go so crazy it’s attacking my body, trying to kill me in nearly every system with the scler derma, and apparently let cancer back in

  • mistyeyes
    mistyeyes Posts: 586
    edited December 2022

    formydaughter - I am so sorry, my heart dropped to my stomach reading everything you are going through. I got the covid vaccine, but have not gotten any of the boosters. My daughter in law has developed Myocarditis from the covid booster. This is a scary time we are living through. I am hoping that you will do fine with whatever treatment you receive. I have said a prayer for you.



  • sydneybased
    sydneybased Posts: 27

    Hi all, I'm 13 years out (from surgery) this coming October. Love to all those who supported me on this board in 2010-2012 and all those who have been diagnosed since. Stay strong xxx

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