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Looking for Her2 Positive survivor stories

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  • MsBrompton
    MsBrompton Member Posts: 324
    edited September 2016

    no evidence of disease

  • lala1
    lala1 Member Posts: 974
    edited September 2016

    Elaine422--My best friend just had her first mammogram yesterday after chemo and then a lumpectomy about 3 or 4 weeks ago. She also HER+ and doing Herceptin till next March and starting rads in 2 weeks. She said she was scared to death because she thought it would hurt, and it ended up not hurting at all. She said she was very surprised. She is a little sore still from surgery but it was definitely not anything to worry about. Maybe take an Advil with you to pop once it's over just in case. Hope all goes well for you!!


  • KateB79
    KateB79 Member Posts: 555
    edited September 2016

    NED = "no evidence of disease."

  • stephincanada
    stephincanada Member Posts: 29
    edited September 2016

    no evidence of disease.

  • lago
    lago Member Posts: 11,653
    edited September 2016

    lkc bit congratulations! thanks for posting!

    Elaine422 NED is no evidence of disease/remission. With breast cancer they rarely say "cured" unless you have survived 25-30 years without a recurrence or pass of something else. While many of us never have to deal with this again some women to recur 2, 3, 5,10 or even up to 25 years later.

  • girlstrong
    girlstrong Member Posts: 299
    edited September 2016

    NED is no evidence of disease. lkc...I love that you keep popping by to share your story. Happiness 🤗🤗❤️🤗❤️🤗

  • NeverForsaken
    NeverForsaken Member Posts: 157
    edited September 2016

    It will be three years since diagnosis (December 13). My last MO checkup was in June. My MO said that after having NED for this long, the chances of reoccurance is minimal now. NED means there is no evidence of disease.

    What I've learned about BC is there are many many variables to the pathology of this disease. I am so grateful for Herceptin and other similar drugs, without which the success stories on this board might be very different!

  • jem0928
    jem0928 Member Posts: 1
    edited September 2016

    Thanks so much for your story since just being dx 8/4/16 w/BC, Stage 2A with estrogren & Her-2 positive and starting 6 rounds chemo on 9/21/16 it gives me the courage that this is just a side road on this journey of life. Thanks!


  • NeverForsaken
    NeverForsaken Member Posts: 157
    edited September 2016

    Hi Jem,

    It is just exactly that. A side road. Bumpy in spots, but totally doable.

    Good luck on this road in your journey..I promise you will learn and grow in strength and character. I can honestly barely remember my chemo days...It seems like a long long time ago! Since bc, I have learned a lot about myself and about other people too.

  • lala1
    lala1 Member Posts: 974
    edited September 2016

    So I've been following this thread for my BFF who was diagnosed ER/PR- and HER+ in March. She had chemo then a lumpectomy which showed a PCR (Woo hoo!) and she is going to start rads next week. She has been panicked from the beginning being one of the "glass half empty" sorts but is now feeling much better about her odds after the PCR. I had my 4 year checkup today with my MO. He and I both love to research and read about BC so we usually chat about the latest studies and such. I told him about my friend and he immediately said "If you gotta have it, that's the one you want!" I'd always heard my kind (ER/PR+ and HER- with no nodes) was the "good" kind but he said nowadays with Herceptin, you can practically cure (yes, he said "cure" but said he'd deny it if asked) BC. He said the long term outlook for HER+ is less than 5% chance of recurrence and that is just in the first couple of years! He said after that, it just keeps dropping and that her BC is much less likely to come back than mine!! Mine has a recurrence risk that can actually go up later which is why they want us on Tamoxifen or an AI for 10 years now. I immediately called my friend and told her what he said and she was soooo happy to hear it, so I thought maybe it might help some of y'all on the thread. Four years ago I remember my BS saying "ok, here's what we want from your results...." and he ticked off ER/PR+ and said we really want HER-. But now with Herceptin, the docs are starting to go the other way. I figure if someone can come up with Herceptin and change the lives of HER- people, then it gives me hope we will find a cure or at least a vaccine in my lifetime. Best wishes ladies!

  • NeverForsaken
    NeverForsaken Member Posts: 157
    edited September 2016

    Hi, lala 1...

    " I figure if someone can come up with Herceptin and change the lives of HER- people, then it gives me hope we will find a cure or at least a vaccine in my lifetime."

    That would be so wonderful!

  • Deaconlady
    Deaconlady Member Posts: 86
    edited September 2016

    Thanks for sharing that lala1!

  • Cwhitney
    Cwhitney Member Posts: 42
    edited September 2016

    La-la1, thank you so much for that info. I was having a "feel sorry for myself blues" yesterday and you brought me up by your post!

  • AliceS
    AliceS Member Posts: 74
    edited September 2016

    Many thanks, Lala, for posting---your positive news that makes us all feel better. My doctor did say that getting past 3 years was important. I'll be 2 years next month. And of course now we have Perjeta for more hope.

    Best wishes to all--love each day!

    Stephanie

  • denise-g
    denise-g Member Posts: 353
    edited September 2016

    NED - No evidence of disease!

    lkc - cannot tell you the number of times you have given me encouragement along the way as I approach my 5 year mark!

    CONGRATULATIONS, great pic, and THANK YOU!!! You have been a part of my life and survival!!

  • HattieHouston
    HattieHouston Member Posts: 5
    edited September 2016

    I'm 74 years old and diagnosed in May 2016. I complete my 12 cycles next week. I just wanted to share that when my markers turned out to be hormone receptor negative and HER2 +, My surgeon told me in a very excited voice that "we have the BEST medicine for that! After you finish your neoadjuvant, the cancer will be so small, we won't even be able to see it." She said I am very fortunate to live now when we have Herceptin and Perjeta. Im feeling really lucky to have HER2+.

  • MsBrompton
    MsBrompton Member Posts: 324
    edited September 2016

    I agree Hattie. I was HER+ and ER-, and after chemo and the year of Herceptin I'm on no medication at all and clear of disease! I'm back at work full time, and jogging and swimming. Husband doesn't mind the fact that I have a fake breast on one side. Cancer already feels a long way away. We CAN move on.

  • maryannecb
    maryannecb Member Posts: 74
    edited October 2016

    Back for my yearly update!

    11 years from diagnosis of stage 3 er/pr -, her 2 pos disease. Glad to report continued good health, a fully normal life and little fear.

    Do as much treatment as is offered and you can tolerate, get back to your normal routine as quickly as you can.

    Put one foot in front of the other.

    Some women don't ever recur!

    Hoping and praying I continue to be one of them.

    Fists up!

  • denise-g
    denise-g Member Posts: 353
    edited October 2016

    FIVE YEARS OUT this month!  Celebrating every minute!  I had a 6 cm plus tumor, 9 positive nodes, Triple Positive - was only able to have 3 MONTHS of Herceptin instead of 12 because I had permanent heart valve damage from Herceptin, I had a heart attack during AC Chemo (no previous heart problems before BC), and lots of other fun stuff.  I NEVER thought I would survive it to FIVE YEARS, but here I am feeling better than I have the whole time!

    Sending love, hope, encouragement, and courage to you all!! 

  • Cwhitney
    Cwhitney Member Posts: 42
    edited October 2016

    Congrats maryannecb and Denise. As I sit in the chair for my 5 oh of 6 treatments, you give me hope that I can hopefully put this past me.

  • specialk
    specialk Member Posts: 9,211
    edited October 2016

    I am a week past 6 years from diagnosis - those currently in the trenches of treatment - you can do this! Thanks to those even further out who return and post and offer hope to those more newly diagnosed. We all remember how scary this diagnosis can be, but know we are all here to pull each other forward and offer support.

  • girlstrong
    girlstrong Member Posts: 299
    edited October 2016

    lala1...I LOVE the good news you are sharing. Much needed and always welcomed. I am 3 years and 3 months out from diagnosis. 🙏🏻Every.single.day I am so grateful because each is a gift. One foot in front of the other; keep going girls! 😘❤️😘❤️

  • zjrosenthal
    zjrosenthal Member Posts: 1,541
    edited October 2016

    Diagnosed July of '15. Finished treatment last October. Clear mamos in July of '15 and '16. God is good. Love, Jean

  • WarriorCheryl
    WarriorCheryl Member Posts: 8
    edited October 2016

    I just had my first mammogram after being diagnosed one year ago. I was HER2+, stage 1, and had a lumpectomy November 1st followed by 12 weeks of taxol/herceptin. I am continuing Herceptin through the end of the year. I also had accelerated radiation for 4 weeks.

    I just met with my surgeon who was ecstatic over my image results. Even though my radiologist wanted me to wait longer for an image to have the breast tissue settle down, and to have some of the radiation leave my body I went for the tomogram as scheduled by my surgeon. I had very little scar tissue, which looked quite healthy. My scar is minimal. I did feel effects of the radiation and was totally wiped out that night. But it is comforting to know all is looking good.

    I think I have been having more pain and tightness on my tumor side following radiation than from the surgery scar tissue. Exercise is important…yoga and stretching and light weight work. Also, a loving cousin told me early on to love my breasts. I kept them both. I massage every day with essential oils and organic moisturizers which keeps the breast tissue healthy. Also a good diet is important and drinking lots of water is key to healthy tissue.

  • CassieCat
    CassieCat Member Posts: 863
    edited October 2016

    Congrats to all, and thank you for continuing to update here. It is helpful to read your stories!

  • lago
    lago Member Posts: 11,653
    edited October 2016

    October 5th was 6 years from my first of 6 chemos. I had surgery first. Still NED!

  • kimm992
    kimm992 Member Posts: 28
    edited October 2016

    I will be a ONE year survivor this Friday!! I never would have thought a year ago that I would be in the place I am today...I am so thankful.

    So appreciate all of the survivors who come back to give us all hope!

  • jellybean59
    jellybean59 Member Posts: 1
    edited October 2016

    Hi everyone,

    I am stage 2b breast cancer Her2 positive. 3 nodes removed, all clear!  I have had 3 rounds of Fec chemo.  I expect to have radiotherapy also soon.  Anyone out there having refused all their chemo treatment?  Still living?  I am 57.  Be nice to have some positive stories please, thanks x

  • AliceS
    AliceS Member Posts: 74
    edited October 2016

    Hi Jellybean59--I wouldn't refuse any treatment, but that just me--in my experience it wasn't as bad as I had anticipated and every side effect I had, I thought--I can deal with this and it's just temporary. If your nodes were clear the stats are in your favor and you should be fine. Best of luck to you!

  • GAP
    GAP Member Posts: 1
    edited December 2016

    Hi, just wanted to share my story with you. Diagnosed 2009 with invasive lobular and ductal multifocal, er+, pr+, her2+, 2 tumours totalling 4cm. Node negative but evidence of vascular invasion. Underwent double mastectomy with reconstruction. Chemotherapy with Herceptin and 5 years of Femara. I remember only too well the initial fear of recurrence. I still have it but it goes underground for lengthy periods of time. Usual pops up if I'm under the weather and at stressful times but initially I thought I would live with it on a daily basis forever ! Not so 😃 I am 7 years (Nov) cancer free and counting so hope this is an encouragement to you, hang in there, it will get easier with time. Warm regards.