Any ER+, Her2+, node positive 3+ years??

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  • elliejdan
    elliejdan Member Posts: 28
    edited January 2013

    i am encouraged to hear these stories. im newly diagnosed and a wee bit scared. thanks to you all!!

  • sarahlou1967
    sarahlou1967 Member Posts: 153
    edited March 2013

    Hi all,

    Just reached my 2 year post dx anniversary, although I did have spread to both lungs from the start I beleive the herceptin is keeping me going and providing the stable status. I also take tamoxifen and now beta blockers for the migraines. Love to you all sarah xxx

  • lago
    lago Member Posts: 17,186
    edited March 2013

     Congratulations Sarahlou! I know my onc has at least 2 patients HER2+ stage IV. One is 6 years out (who I've met, actually she's a reporter and interviewed me this past fall) and another that is 10 years out. Herceptin is truly amazing.

  • missy_111
    missy_111 Member Posts: 141
    edited March 2013

    Congratulations to you all, and thank you for coming back to inspire us!!

    Hi Lago :)

  • sarahlou1967
    sarahlou1967 Member Posts: 153
    edited March 2013

    Hi all

    Lago - thank you for your words of encouragement especially as I am stage IV, 6 and 10 years out is truly amazing and yes thank god for the amazing miracle drug herceptin.

    Love and light to you all

    Sarah xxx

  • lago
    lago Member Posts: 17,186
    edited March 2013

    {{{waves at missy}}}

    Sarahlou1967 I have a now friend that I met just as I was doing herceptin. I joke and tell her that I've know her 30 minutes longer than our onc. She too is HER2+ and was just diagnosed with mets last month. Really hoping all this stuff gives her 10+… because there is "living proof" now that it can.

    The longer you survive the more likely a new treatment or even cure will come along to extend life. They seem to be doing so much for HERe2+ these days. Many more options.

  • DEAK95
    DEAK95 Member Posts: 121
    edited March 2013

    Hi everyone,

    I am a 7 yr Survivor with Bone Mets (17 overall yrs). I am a triple positive and have had Herceptin weekly and have skipped 3-4x/yr for being out of town on vacation or with family or friends out of town. I , too had to stop for a 42% Muga Scan for 11months after 5 yrs on the drug. I'm 51 and had Adriamycin during my Stage 3 BC treatments at 34 yrs old. My Onc thinks it was the combination having Adriamycin early in life then having cumulative Herceptin. I had returned to 60-65% after the break but have been declining the past yr and am at 50% and have a Echocardiogram next week to check on it!!! I am on weekly treatments and we run it at 45 min-1 hour infusion since I was getting a migraine and hot flashes on 30 minutes or less. Best of luck to everybody!!! Pat

  • lago
    lago Member Posts: 17,186
    edited March 2013

    Wow Pat, 17 years!  You go girl!

  • mom2twins34
    mom2twins34 Member Posts: 185
    edited April 2013

    Hi Girls,

    I know I posted here when I was 2 years out. Just wanted to update that I'm now at 3 years since diagnosis of Stage 3C er/pr+, Her2+++.

    Warmest wishes to you all!

  • LeslieVilla
    LeslieVilla Member Posts: 95
    edited April 2013

    Hello Ladies, I'm her 

    Hello, Its been 2 years.. I had 2 lumpectomies -denied chemo and radiation -they didnt' get clean margins  so i tried hemp oil for a year and vegan diet but stopped on bothafter 1 year  2 years later i have a new lump its very large same breast with suspicious lymph nodes. Need to make some tough decisions now.  I am Her2 and er pos.  found a new oncologist that says she will consider Herceptin without chemo, unlike the one who did my surgery.  I'm considering massectomy.

  • LeslieVilla
    LeslieVilla Member Posts: 95
    edited April 2013

    Hello What tratments have you been doing ?

  • LeslieVilla
    LeslieVilla Member Posts: 95
    edited April 2013

    Missy How are you doing now?

  • lago
    lago Member Posts: 17,186
    edited April 2013

    LeaslieVilla c'mon and join the triple positive thread too. We do have some gals that are PR- over there. Hey I'm only 3% PR+ although my onc considers it +… my BS considers it -.

    linky to triple positive thread.

  • LeslieVilla
    LeslieVilla Member Posts: 95
    edited May 2013

    Thanks will go there now :)

  • LindaKR
    LindaKR Member Posts: 1,577
    edited May 2013

    Hit the 3 year mark last  month! And though I don't have any studies to back it up. My breast surgeon told me this week that in his patients (he only does BC patients and has for many years) and his many years of experience, that in cases such as mine, if a recurrence happens it's almost always within the first 2-3 years.  He did say that doesn't mean I can't happen, but that he has seldom seen it happen.  Dance of Joy!!!!!  Still going to be vigilent, but it felt nice to hear a positive! I'm sure happy that I made the choice to hit it with all they had! And another reason to continue on that lovely AI I take!

    Modified Radical MX w/axillary dissection; 6xTCH, Hercpetin for a year, Rads, trying 3rd AI Aromasin. No Reconstruction. Lymphedema.
    Dx 3/19/2010, IDC, 4cm, Stage IIIa, Grade 2, 5/18 nodes, ER+/PR+, HER2+Surgery 04/02/2010 Mastectomy (Left); Lymph Node Removal: Axillary Lymph Node Dissection (Left)Chemotherapy 05/15/2010 carboplatin, TaxotereTargeted Therapy 05/15/2010 HerceptinHormonal Therapy 09/15/2010 AromasinRadiation Therapy 09/25/2010 External

  • txsurvivor
    txsurvivor Member Posts: 8
    edited June 2013

    yes, 7 years out.. dx at 36..herceptin for a year amoung other things.  sentinel node positive but took 11 out and now have lyphedema.  

  • saralmom
    saralmom Member Posts: 329
    edited June 2013

    Hi - I used to be on these boards all the time a while back but haven't been here in a while.  (Hi to everyone from back in those days!!).  I remember how much I loved hearing stories about people years out from dx and tx.  

    It feels great to post that I am 3 years 4 months out from diagnosis!  I did lumpectomy, ACT, radiation and Herceptin in 2010/11.  I feel great and am still NED. I actually recently graduated to 6 month onc appts (v. 3 months).  

    My onc told me at my last appt in January that Her2+ that recurs usually does so in 1-3 years - but most often in the first year.  And her "years" count from finishing treatment - as in finishing Herceptin.  So while I'm 3+ years from dx, I'm currently at the 2 year mark from finishing Herceptin.  But I think every doc says something different with regard to those stats!  

    Take care everyone!!

    Sara

  • Linda2222
    Linda2222 Member Posts: 9
    edited June 2013

    I have a friend who had several lymph nodes involved and was H.E.R. positive and is 5 years out. I am getting on all of the breast cancer forums that I can find. PLEASE ladies pass this on. I was diagnosed a year ago with breast cancer. I was told that I was H.E.R. positive and was given herceptin that ruined my heart. I only had 4 rounds of it and it caused a blood clot in my heart, congestive heart failure, and an enlarged heart. The worst part about it is that a different hospital retested my slides and I was found to be negative for H.E.R. so I didn't even need this medication to begin with. I didn't know, and most ladies probably don't, that the test for H.E.R. is not real definite sometimes and if I had known that I would have gotten a second test done to be sure. Any woman out there who has been recently diagnosed as being H.E.R. positive please get another test at another facility to make sure that you need herceptin. I am trying my best to get the word out so that this will not happen to another woman. We sometimes put too much trust in our doctors and they make mistakes too. Be in charge of everything that is done to your body and don't be afraid to ask questions. It is your body and you have every right to get second opinions on everything. It is so devastating when you are diagnosed that it is very hard to make rational decisions about your treatment but you really need to. That is something that I learned the hard way. My email is finallyaborland@yahoo.com if anyone wants to ask any questions about my post. 

  • lago
    lago Member Posts: 17,186
    edited June 2013

    Hi saralmom I'm right behind you (although no nodes just a big tumor)

  • marcy4
    marcy4 Member Posts: 162
    edited July 2013

    I had my surgeries in Feb. 2010 and treatment throughout 2010-2011.  Had Herceptin, Tamoxifin and am now on Exemestane since I am post menopausal.  Feeling absolutely great.  I was discharged by my oncologoist this June 2013.  I had been using a personal trainer for the past 2 years to help stay in shape and hopefully ward off lymphedema.  My advice is to stay active and think positive.....sometimes I have to remind myself that I ever had cancer!  All the best the ladies on these discussion boards.  You were an amazing source of support and strength to me when I really needed it.

  • sallyw
    sallyw Member Posts: 15
    edited August 2018

    I just posted under the success stories.

    I was diagnosed 10 years ago, 3.7 cm IDC, Grade 3, 1/15 nodes, ER+/PR+, Her2neu+. I was on the clinical trial for early bc herceptin. My oncologist just discharged me. She said that she's never had a patient with a recurrence with my type of bc after this long so that's why she discharged me. She said it was possible I could get bc again but that it would be a new primary rather than a recurrence.

    I'm feeling fine (and very lucky!).

    Sally

    Update 8/18/18: Make that now 15 years post-bc! Woohoo!

  • geewhiz
    geewhiz Member Posts: 1,439
    edited July 2013

    Sallyw, That's awesome news! Congratulations!!

  • lago
    lago Member Posts: 17,186
    edited July 2013

    Sally what great news! It's not often triple positives post.

  • sallyw
    sallyw Member Posts: 15
    edited July 2013

    Glad to provide encouragement/inspiration.  Smile  I got it in truck loads from this site when I needed it.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2013

    I'm new to the forums. I'm 9 years out since diagnosis with triple positive stage III. Finished one year of Herceptin in Feb. 2006. I am still on Arimidex, since May 2005. Feeling great! Really no side effects from either -- surgery, chemo & radiation weren't good, though.



    I really believe the Herceptin & Arimidex have been the saving graces for me!

    Have been traveling world-wide since completing radiation, am in Hawaii right now.
  • lago
    lago Member Posts: 17,186
    edited August 2013

    ★ ✩ ★ ✩ ★ Today marks 3 years NED for me. ★ ✩ ★ ✩ ★

    No nodes but a really big (6.5cm in totally… 5.5 IDC) HER2+,Er+, Pr+ tumor
    Plans on playing the lottery later today. Wish me luck.

    BTW I thought it was more common for HER2+ to have node involvement. We have such fast growing tumors.

  • Annie54
    Annie54 Member Posts: 247
    edited September 2013

    Whoo Hoo lago! Congratulations!  So happy to see so many Her2+ women doing well.

  • my2boys
    my2boys Member Posts: 339
    edited September 2013

    I was her2+ with positive nodes (2). Grade 3....not too good. I had a mastectomy and 22 nodes removed. I underwent Taxotere, Carboplatin, Herceptin. The cancer returned Her2+ and ER+ ....in the scar....right when my year of Herceptin had just finished. I went back into treatment Adriamycin, Cytoxin/Taxol , and then I did year of Tykerb/Herceptin. I underwent radiation (33 treatments) and now I am on Herceptin every three weeks (no big deal) and daily aromasin (also not a big deal). This will continue for an indefinite time. My hair is back....long and pretty....my reconstruction isn't looking too good because of the radiation and surgery I had to do last summer to remove a scar capsule that formed, so I don't wear tight tops anymore. I have lymphedema, but it isn't too noticeable and not that hard to manage.



    I just passed my 5 year mark and I honestly feel good. These past 5 years I have had some amazing vacations with my hubby and kids....celebrated weddings with my nieces and nephews....watched my kids go from elementary to high school....and loved every minute of these events.



    I am officially 5years and 1 month from original diagnosis and 3 1/2 years from recurrence. I am thinking it will only get easier from this point on and I am hoping I am right.

  • Bren58
    Bren58 Member Posts: 1,048
    edited September 2013

    Congrats my2boys! You sound like you have an amazing attitude about all you have been through.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited September 2013

    It will be 3 years since diagnosis on 9/27, had BMX on 11/1, but I usually count my cancerversary from the first week of Dec. since that was when my positive nodes were removed.

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