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HER2 Positive-anyone 10 years out?

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Comments

  • soccermom
    soccermom Member Posts: 55
    edited December 2013


    You can definitely do it! All the best to you- stay strong!

  • lkc
    lkc Member Posts: 182
    edited December 2013


    Soccermom, I've been away from these boards and missed your mega milestone! congratulations I am so happy for you.....coming up on 10 in 1.5 yrs!

  • LisaH
    LisaH Member Posts: 16
    edited January 2014

    AlaskaAngel and all!  What wonderful stories! AA your stats are very similar to mine.  

    Keep the faith ladies!

  • marvelher2
    marvelher2 Member Posts: 16
    edited January 2014

    my sister is now 11 years NED .  She was stage IIIc 21/25 nodes, triple positive.  She Received Herceptin a year after she finished lumpectomy/chemo/ rads.  Hoping mine will be as successful!!

  • denise-g
    denise-g Member Posts: 353
    edited January 2014

    Wonderful news about your sister. . .

    I see no reason why yours can't work as well. 

    You can do it!

  • mommy13
    mommy13 Member Posts: 13
    edited January 2014

    I'm so glad to read these success stories. From what I am reading on the internet I am very scared about my future 

    I am 27 Stage 2b, er/pr -, Her2+++ grade 3. All the doctors seem very worried that it will return. I pray I am successful like a lot of you ladies and get to at least see 40! My kids are 4 years & 7 months so I have plenty to live for. Just need this cancer to back off!! 

  • marvelher2
    marvelher2 Member Posts: 16
    edited January 2014

    Mommy13,

    What type of treatment are they planning for you?  I am going to receive what I understand is the latest and greatest combo for Her2 positive BC as neoadjuvent (before surgery) chemotherapy including Taxotere, Carboplatin, Herceptin and Perjetta.  Herceptin and Perjetta are the two targeted therapies I'll receive and they tag team with the chemo drugs on the Her2 protein receptors.  My doctors are quoting amazing results with it  I'll bet with the size of your tumor you would qualify for neoadjuvent.  My tumor is close to 6 cm when you count the DCIS that surrounds the primary tumor which is 2.6 cm.  My surgeon wants to shrink the tumor to make it possible for me to have a lumpectomy, but additionally, wants the assurance that he can see that the chemo mix is working for me.  If you haven't already, maybe you can discuss this type of treatment.  Perjetta, generic name of  Pertuzumab was just approved in October for neoadjuvent chemotherapy for people like us.  It was released early because the results were so positive that the FDA felt it was unethical to withhold it long enough to get through the trial.  According to my surgical oncologist, being Her2 positive is no longer a negative factor due to Herceptin and Perjetta now available.  

  • lago
    lago Member Posts: 11,653
    edited January 2014

    marvelher2 they thought my tumor was 7cm before treatment but still felt I should do surgery first. Ended up only 6.5cm total with 5.5cm being IDC (rest DCIS). There are other factors other than size that goes into figure out what to do first. Survival rate the same.

  • marvelher2
    marvelher2 Member Posts: 16
    edited January 2014

    Hi lago, true, every diagnosis is different, but Perjetta is only approved so far for neoadjuvent chemo, so since her tumor size is large enough to qualify, it might be a good thing to talk about with her doctors.  I see that you were Dx in 2010 so at that time, Perjetta was not an option.  The results that I've heard about for this very new drug are phenomenal.  My Oncologist says he has a woman with very large tumors (7cm) in both breasts that has had a near complete response after two sessions of chemo with Herceptin and Perjetta.

  • lago
    lago Member Posts: 11,653
    edited January 2014

    Yes I know. Tried to get into the trial for Perjetta but they said I had to be node positive. They changed the peramiters about the time I was diagnosed.

  • linnyhopp
    linnyhopp Member Posts: 466
    edited January 2014

    I think this is my first post on this topic, so forgive me if I seem way behind by asking this question.  Is perjeta ever given after active treatment has been completed?  I have an appointment with my MO in 2 weeks and wonder if I should mention this to him.  If anyone can tell me when it's appropriate to use this newly approved drug, please share.  Thanks...Linda

  • marvelher2
    marvelher2 Member Posts: 16
    edited January 2014

    linnyhopp, all I know about is that it has recently been approved for neoadjuvent (before surgery) therapy, but by all means, ask your Oncologist about it.

  • rocknbaby
    rocknbaby Member Posts: 1
    edited January 2014

     I too was diagnosed back in 2008 with the Her2 positive.  I had all the chemo with Herceptin and also the radiation.  Every year when it's time to get checked I freak out thinking I'm going to hear bad news.  So far so good!  This is a great site.


  • lopsided_blogger
    lopsided_blogger Member Posts: 10
    edited January 2014

    I'm seven and a half years past diagnosis and treatment with Herceptin, plus A/C T, mastectomy, radiation and tamoxifen for four years.

  • mommy13
    mommy13 Member Posts: 13
    edited January 2014

    I will inquire about it to my oncologist 

  • linnyhopp
    linnyhopp Member Posts: 466
    edited January 2014

    Marvelher ~ Thanks for the info.  I will definitely ask my MO when I have my appointment next week.  He wouldn't recognize me as his patient if I don't ask him at least one question!

  • sciencegal
    sciencegal Member Posts: 546
    edited January 2014

    I had a 9 cm tumor and positive nodes, still got a complete response to TCH neoadjuvant therapy. No cancer cells found at mastectomy, all 24 nodes clean. Needless to say, I LOVE herceptin! (and any derivative).

    I just had my one year checkup and still NED. Yay!

    I am praying for this to continue right alongside the rest of you, and love the long-term success stories- thank you!!

  • kathaleen3
    kathaleen3 Member Posts: 1
    edited January 2014

    not nearly close to 10 years out yett but I have 4 more her herceptins treatments left and I have been given the yur cancer free bck in October so abt 4 months now ..I'm bring optamistic here :)

  • sciencegal
    sciencegal Member Posts: 546
    edited February 2014

    Good luck Kathaleen! Good luck to all of us!

  • denny123
    denny123 Member Posts: 1,553
    edited February 2014

    Checking back in.  Started Herceptin in Jan of 2004.  Herceptin with Gemzar put my liver mets into remission after 9 months.

    Continued on with Herceptin alone and was in remission for 6 years.

    Now have a recurrence in lymph nodes behind my sternum.  Combo of Gemzar+ Herceptin + Faslodex is doing the job on nodes.

    I have remained on Herceptin, so it is 10+ years for me.

  • lago
    lago Member Posts: 11,653
    edited February 2014

    Denny123 10 years Awesome!

  • LindaKR
    LindaKR Member Posts: 1,304
    edited February 2014

    Denny 123 - that amazing, thank you for sharing!!!!!!!

  • sciencegal
    sciencegal Member Posts: 546
    edited February 2014

    Awesome Denny, thanks for sharing.

  • Mimi52
    Mimi52 Member Posts: 1
    edited May 2014

    I am. 6 years out!

  • lago
    lago Member Posts: 11,653
    edited May 2014

    Yay Mimi! 

  • Optimistictraveler
    Optimistictraveler Member Posts: 25
    edited May 2014

    For me, it will be 10 years since diagnosis in August, still NED! 

    Triple positive, Stage IIIa, grade 3. I believe Herceptin saved my life. (Plus, I'm still on Arimidex after 9 years).

  • soriya123
    soriya123 Member Posts: 384
    edited May 2014

    yay Optimist and Mimi congrats!

  • Deblc
    Deblc Member Posts: 154
    edited May 2014

    This thread is so encouraging, I come back to it all the time, I have a question about diet. Did any of you ladies drastically change your diet ? I am inundated with so much "advice" on "go vegetarian/vegan, eat organic, don't eat sugar, don't eat dairy, don't eat fast food" etc etc etc that I am afraid to eat anything at all, in case that is a contributing factor to reoccurrence! Would love to get your input on this.

  • girlstrong
    girlstrong Member Posts: 299
    edited May 2014


    Oh great question...I would like to know this too.  For me the dietary changes I have made are daily Vitamin D, lots of fresh vieggies daily (especially broccoli); no alcohol, and baby aspirin.  I have heard that some women have started also taking Curcumin...I haven't done this yet but have it already at home.  Oh I'm also exercising 4-5 times per week. 

  • annika12
    annika12 Member Posts: 92
    edited May 2014

    Was having one of those mornings when doubt creeps in and all the what ifs enter my mind (doesn't happen a lot) so I peeked in here and my hopes for a long life is back :) The what ifs are put away cuz what ifs are to time consuming and my life is to precious to waste waiting !!! Thank you for the success stories :)   

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