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Her2 Positive with Estrogen negative Surviors Stories wanted:

jengrsq Member Posts: 3

Is there any Her2 Positive with estrogen negative Surviors Stories. We need hope and encourageement.

Thanks Deb



  • Annaanne
    Annaanne Member Posts: 7
    edited October 2007

    Hi Deb:

    Read the her 2 roll call thread below this and you'll find lots of her+, hormone neg thrivers!

    I'm one -- dx stage 3a May, 05. Completely recovered now and doing great.


    PS. Let me know if you need more specific info or encouragement.

  • Valsul
    Valsul Member Posts: 7
    edited October 2007

    Hi Deb

    I am Her+ and ER-/PR+ - so I fit your bill for Eneg.

    Dx 1 Aug 06 - had mast, chemo (FEC & Taxotere), rads, Arimidex for that PR+, and today have had my 13th infusion of Herceptin.

    So far NED -Yippee  Smile

    Valerie S

  • bevnurse
    bevnurse Member Posts: 1
    edited October 2007

    Hi Jen,

     I am Her2 +++ pos and er/pr neg. I was dx 11/2004 with IDC 4 cm and 1 positive node. I am doing great, am NED, and finally working on my recon. I did AC&T, MRM, rads, and nearly 2 years of herceptin (long story).

     There is not much good news in the literature regarding her+ patients so stop looking. I know I scared myself to pieces when I got my diagnosis!

    What you need to keep in mind is that with the new treatments (herceptin and tykerb) the picture for us has improved dramatically and the literature has not had the opportunity to catch up yet.

    Hang in there,


  • BethNY
    BethNY Member Posts: 74
    edited March 2008

    I've only known 1 person that got mets after taking herceptin w/ initial dx.

    Like my oncology nurse said the day it became available for early stage BC, 'this is the best security blanket you will ever have in your life.'

    3 yrs later, I still believe it.

  • KLynn
    KLynn Member Posts: 490
    edited October 2007

    Hey Beth, Well I'm another, I had herceptin as a trial drug with my original dx.  I was part of the original clinical trial. I had it for 1yr every week. 4 1/2 yrs later mets to the lungs. I had a/c taxol , bilateral, raditation, tamox, and of course the herceptin,. I'm er/pr++++and her2++++ way off the charts doc says. Went back on herceptin again with different chemos, for the last 2 yrs, and I am now in remission. I will stay on herceptin (hopefully forever) I will receive it every 3 weeks now instead of weekly. for me, I think herceptin is the key ingredient in staying ned. Wish I had stayed on it after the trial , but that wasn't part of the protocol then back in 2000. I've never had a security blanket before, but I sure do now, and its herceptin. Take care and stay healthy  KLynn  (by the way loved your speech)

  • Verjim
    Verjim Member Posts: 1
    edited October 2007

    I too have that same diagnosis, but too early on to call myself a surviror but then again, every day that goes by, we are stronger!!!!  I am positive and upbeat and know the awareness of breast cancer is growing and money is pouring in for more research....hopefully our prognosis will only continue to improve. I start chemo next week, am scared and excited, nervous but have peace inside also...It was wonderful to read your posting as I had that same diagnosis and have not found anyone else that did. Take care and know you backside is covered by so many of us pushing for you!!!  V

  • raluca63
    raluca63 Member Posts: 3
    edited October 2007

    Hi Deb,

    I am one of the survivors whose cancer was HER2 +++ and ER/PR-, diagnosed almost 2 years ago. I think I am one of the few girls with a HUGE 13 cm tumor and numerous positive lymph nodes ( the biggest one was 6 cm), but after 2 years from the day I've heard that I have cancer I am still here and NED. I had neoadjuvant chemo (A/C , followed by Taxotere/Herceptin), then mastectomy and radiation. After 3 cycles of chemo my tumor was gone and the pathologic report indicated no cancer in either breast tissue or the 12 nodes taken out. So there is hope for us too. Herceptin is a miracle drug and now NeuVax looks very promising for treting HER2+++ breast cancer.


  • nagem
    nagem Member Posts: 46
    edited October 2007

    I passed my 2-year mark in September. I was Her2neu+++, ER/PR-, 1.3 cm, 1 positive node. AC/T-H + 25 rads + bilateral mastectomy, and I'm strong and fit.

  • lexi4
    lexi4 Member Posts: 59
    edited October 2007

    Wow, Calipso! Thanks for sharing! That is an awesome response to your chemo and herceptin txs!! WooHoo!!! I am so grateful for the herceptin.

    I was diagnosed two years ago in August w/ stage IIIb bc. I had a/c then taxol and herceptin began after my 1st taxol tx. I had to take a break for about 4 weeks with some heart issues, but was able to restart and finish out my herceptin txs. 


  • bluewillow
    bluewillow Member Posts: 28
    edited October 2007

    Hi everyone,

    I just want to say how much your positive stories mean to me too, because I am also HER2 positive.   I am currently doing A/C (and doing very well and working every day), will start Taxol and Herceptin next month, then radiation after chemo.  I hang on your every word, because as I have stated in my earlier posts on this forum, my doctor wasn't at all encouraging, although his nurse practitioner certainly has been, thank God for her!  Again, thanks and keep those positive stories coming our way!   

    Hugs and best wishes to all,

    Mary Jo

  • maryannecb
    maryannecb Member Posts: 74
    edited October 2007

    Count me in too. My tumor was 9cm, I had two positive nodes, 2 years ago in Sept.

    Back to life, back to work and about to be two-breasted again.

    Herceptin does appear to be giving more of us a better chance.

    Fists up! 


  • DebbieB
    DebbieB Member Posts: 14
    edited October 2007

    Hi Deb,

    6 yrs ago on Halloween I found out I had bc.  The tumor was 2.4 cm and the surgeon couldn't believe I didn't have any positive nodes.  I was Stage 2, Grade 3, Highly HER+++ and ER-/PR-.   Herceptin wasn't even offered unless you were Stage 4 so I only received 4 rounds of AC chemo.  Here it is 6 years later and I am still NED!!!

    Keep in mind only about 20-25% of us are HER+++ and doctors only started routinely testing for the HER-2/neu oncogene in the last 6-8 years.    On the website you will find lots of women who are HER+.  A lot are NED but what I find encouraging is the fact there are a lot of Stage 4 women who are HER+ and surviving!


  • jengrsq
    jengrsq Member Posts: 3
    edited October 2007


             Thank you so much for your stories. You are all uplifting and encouraging to all of us who are in there journeys. Presently I am doing chemo. Second round will be November 2/07 I will be taking Taxotere. The stories you have shared give all us Hope, Courage and Faith.

    Thanks Debbie

  • kimf
    kimf Member Posts: 14
    edited October 2007


    Coming in late, but count me in too. I'm approaching my third anniversary...dx'd 12/04 with IDC, er/pr -, her2+++, 15/23+ nodes, completed 4 dd A/C, 4 dd Taxol, 28 rads, a year of herceptin and I'm NED. I was 39 at dx with three young children and am doing great today.

    Hang in can do it!

  • mmcmom
    mmcmom Member Posts: 26
    edited October 2007


    Coming in late with Kim.  I was diagnosed April 3, 2006 at 39.  4.5 cm tumor, 2 satellite tumors.  Neoadjuvant, dose dense chemo, 4 a/c, 4 taxol and herceptin, mrm, snb, 37 rads, 1 year of herceptin.  Complete pathological response at surgery !!  Yeah!  NED, now.  Also have 3 young, very active children! The targeted therapies are amazing now!!


  • Brenda_R
    Brenda_R Member Posts: 52
    edited October 2007

    Yep. Her2+, ER- PR-

    3.7cm tumor, lumpectomy. 1 positive IM node. A/C chemo, rads, and now doing Herceptin.

    Latest scan shows no evidence of metastatic disease. I am now almost 1 year out from dx.

  • EachDay
    EachDay Member Posts: 29
    edited October 2007

    Count me in this group.  I'm her2+ and er/pr -

    Diagnosed in May 2005, lumpectomy, axillary node dissection (1 node with traces discovered in SNB during other node involvement).  2 cm. tumor...did 8 rounds chemo, 30 hits of radiation, 1 full year of herceptin (which finished in May 2007)...and I am currently and loving my life.  Taking it just one day at a time.

  • goldengirlmk
    goldengirlmk Member Posts: 3
    edited October 2007

    Hi All:

    I just found out last week that I am HER2+ and do not quite know what it means.  I asked a hemotology oncologist and he said the people who order the study, do not quite know what it means.  He made it sound like an insignificant finding.  I am also ER+/PR+.

    Thanks for your input.  I do plan on doing a google on this test, as well.


  • kimf
    kimf Member Posts: 14
    edited October 2007


    Being Her2+ is far from an insignificant finding! Thankfully, knowing you are Her2+ allows you the ability to take a drug called Herceptin for one year. Those who take herceptin are 52% less likely to have a recurrence than the women who do not take it. It is truly a miracle drug and one that all Her2+ women should take, in my opinion.

    Definitely talk with your Oncologist about treatment and how Herceptin will come into play in your treatment plan. Demand the drug if they are wishy-washy about it. It is a life saver, I promise!

    Good luck


  • jengrsq
    jengrsq Member Posts: 3
    edited November 2007

    Dear Ladies,                                                                    11/03/07

                       Thanks again for the stories. You really have given courage and hope. Every night I pray for all of us women who have breast cancer and to give us courage, hope and faith. I ask 'God" to watch over us. In my heart I know we will all be fine and there will be miracles along our path.

                                                                        Your Friend Debbie

  • janie44
    janie44 Member Posts: 25
    edited November 2007

    Hey ladies,

    Count me in.

    Dx 3/11/04  /   HER2+++  /  ER/PR negative  /  grade 3's /              7 positive nodes with one as big as the tumor and two wrapped around the supraclav /   Stage III

    Lumpectomy and double breast reduction

    AC/Taxol/Followed by Herceptin


    Over 3 & 1/2 years out still dancing with NED

    May we all dance until we die at age 100 from all the dancing!

    Love and hugs to all,


  • lkc
    lkc Member Posts: 179
    edited November 2007

    Coming in late, too! Dxed may 05, er/pr neg,HER post 12/14 positive nodes.Partial mast, then full mast ,AC dose dense x4, TaxotereX 4 W herceptin , 35 rads, prophylactive left mast.

     Bilat Reconstruction  9 still on Herceptin- prophylcatively ) and NED,

    Life is great, and herceptin is a god send.

    You will be fine

  • Jenniferz
    Jenniferz Member Posts: 25
    edited November 2007

    T1a, N0,M0, maste. on May, 2006. Tumor was less than 3 mm., no chemo, no rads, no herceptin. I was told by 3 different drs. that my not having chemo has no effect on survival.  So, I count myself lucky, and move on with my life. ( Also have been told by one person I just had "a little cancer" and to move one, but that's a whole other story!!)

    I too am not secure with the word "survivor" yet, but getting stronger each day.  I'm NED, so life is good right now!! Cool

    May you continue in good health.

  • mother78
    mother78 Member Posts: 2
    edited October 2008

    My mother is 78 years old. She was diagnosed with BC a couple of months ago. Her tumor was only 1.2-1.6cm. She had a lumpectomy but then did not get clear margins so had another one. Her nodes were all clear. She is Estrogen negative , but HER2 positive. Her surgeon didn't think she would need chemo, just some radiation. She is/was a very healthy 78 and loves her independence. In fact, she live alone. She told her oncologist she wants 10 good, healthy years so he recommended a combo of taxol/herceptin weekly for 12 weeks and then continue with herceptin every 3 weeks for a year. I just wonder if anyone thinks this is (pardon the expression) overkill? We hate for her to have to go through this if she doesn't really need it. What do any of you think? Is it a difficult to handle chemo?


  • cmharris59
    cmharris59 Member Posts: 111
    edited October 2008

    Hi all ,

    I am out of treatment now. The docs had to stop my Herceptin infusions after only 4 months. Anyone know of anyone that has had to stop taking Herceptin?


    The initial chemo was not that bad for me.  Taxol and Herceptin were another story but I am the exception. If your mom wants 10 more years encourage her to do the chemo and Herceptin. It is not overkill. This is one of the deadliest breast cnacers out there and is very aggressive. Without treatment I would think 10 years is a stretch. I encouraged my father in his 80's to get the treatment for prostate cancer and he is still with us in his 90's. 

    I can tell you the problems that I had with Taxol adn Herceptin. They are possible side effects but they are not common and are usually temporary. With Taxol, I had peripheral neuropathy which is nerve damage commonly associated with a lot of diabetics. With Herceptin, I had congestive heart failure. Once the treatment stopped my heart function has resumed normalcy, but I still have neuropathy. 

    I hope that you help your mother thru this horrible diagnosis. 

    Good luck to all of you survivors.

  • mother78
    mother78 Member Posts: 2
    edited October 2008

    cmharris, what do you mean this is one of the dealiest breast cancers? do you mean the HER2 part, the estrogen negative, the combo, or what? when we were told it was a smallish tumor, no nodes and basically stage 0, we thought all was good. the neuropathy is one of the things i fear most for her.

    good luck to you.

  • cmharris59
    cmharris59 Member Posts: 111
    edited October 2008

    The way that I understand breast cancer.... 

    Before herceptin, Her2+ killed a lot of women so please get the treatment. Neuropathy is a terrible side effect from Taxol, but it is doable. Believe me, I am 49 and I was suicidal just contemplating the surgery that I had to have. So if I tell you it is doable, you can rest assured that I am not trying to sugarcoat it.  I have trouble moving around every day, but I know a lot of women that have taken Taxol and never had the neuropathy.  I take Neurontin/gabapentin daily for the neuropathy. Some days are better than others. My oncologist doesn't even know how to treat the ongoing pain from the neuropathy. She has never seen someone get it like I have it. But then, I had every side effect known to man. 

    Hormone positve cancers were the first ones that doctors could actually treat effectively.  Since Herceptin was developed, Her2+ cancers are now treated as effectively as hormone positive cancers. Prior to that, due to the aggressive nature of the cancer and the lack of treatment for it, many women died. Today, the hardest cancers to treat are the women who are triple negative. 

    I had no positive nodes and prior to my surgery my tumor had completely disappeared due to Adriamiacin/Cytoxan  chemo prior to surgery.  I still had to take the Herceptin and Taxol afterward due to the aggressive nature of this cancer.

    I hope this helps.

  • ladybug15
    ladybug15 Member Posts: 1
    edited November 2008
    hi all i was dx. in 1995 i had a lumpecpomy and rad.and chemo it was so hard because i had small children at the time . I was at that time only 29 i was cancer free for 12 years then i found a lump when i was in the shower in 2006 it was cancer my tumor was 5 cm and her2+ er- stage 2 and grad 3 herceptin is why i am alive today i am cancer free for 1 year and back to work be brave and safe love all Rita K.Wink
  • EGAL
    EGAL Member Posts: 19
    edited November 2008

    Unfortunately, I am not one of the lucky ones~I am Her2 +++ but just dx'd with brain mets.  I had 4 AC's, 4 Taxotere, 36 rads, one year of Herceptin and 3 months after finishing that, I got the mets. 

    I hope all the Her2 gals get great results~Wink

  • lfasano44
    lfasano44 Member Posts: 8
    edited November 2008

    Thanks so much to everyone for all their positive stories, we need all the help we can get, keep them coming!!!!