Any Stage 3, HER2+ (only), Node(s) + Girls here?

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Frankie_
Frankie_ Member Posts: 422
edited June 2014 in Stage III Breast Cancer

I  have noticed quite a few girls here that are dual/triple positive here on the Stage 3 thread. I 'm interested to see how many of us are here who are Stage 3, HER2 + (only). Please drop in to say hi.

Edited to remove "Node(s) +". SHOULD INCLUDE NODE + or NODE -  (sorry my bad)

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  • fightinhrd123
    fightinhrd123 Member Posts: 633
    edited May 2010

    Well i mightve been a stage 3, definitly had pos nodes, but did chemo first it killed them, so im not too sure, but thought id drop in and say hi :) 

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  • lkc
    lkc Member Posts: 1,203
    edited May 2010

    me! I had 12 pos nodes,  am er pr neg , her 2pos. stage IIIC and   am coming up on 5 yearsend of this mo.! NED!

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  • lexi4
    lexi4 Member Posts: 1,074
    edited May 2010

    Me too! Stage IIIB, er/pr- and her 2++++. 4 A/C, 4 Taxol and rads. Herceptin for a year.

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  • ango74
    ango74 Member Posts: 255
    edited May 2010

    I am also ER/PR neg and Her 2 positive with node involement. It nice to see the two above me are 5 yrs out.  I finished my Herceptin in Sept and just finished the AE37/GP2 vaccine trial yesterday.  I am so glad to be done with treatment.

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  • luvmyself
    luvmyself Member Posts: 146
    edited May 2010

    I am also er/pr heg Her2 positive. First diagnosised in feb 2006 IDC grade 3 no positive nodes.did 6 TAC along with 35 rad treatments and 10 herceptin only treatments, 2nd diagnosied November 2008 IDC grade 3 er/pr neg HER2 positive, did 6 rounds of CMF. 3rd diagnisis IDC local recurreace did 6 months of Xaloda/ Tykerb. 4th diagnosis Dec 2009 1 positive node and mets to the skin.  I just finished 12 weekly treatments of Navelbine/ Herceptin and am waiting to my PET Scan. skin mets are gone. I'm only asking that I get a break as I've been on something for the past 4 years.

    Jill

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  • Melinda41
    Melinda41 Member Posts: 672
    edited May 2010

    I fit in here! Uni-mast, 4 AC, 12 T/H, ready to start rads and finish the H's.

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  • gogo_xago
    gogo_xago Member Posts: 131
    edited May 2010

    hi girls, my mother has HER2-, but it's not clear for me the difference from HER2+. I suppose that when the HER2 is +, you can have Herceptin, but what else make the difference?

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  • Frankie_
    Frankie_ Member Posts: 422
    edited May 2010

    Hi Girls,

    Nice of you to check in and say hi. I am inspired by IKC/Linda & Lexi4 for nearing their 5 year mark/journey. I sure hope you both have many NED years ahead!!! 

    I have just started my rads (1 week) 5 to go! I will continue to have Herceptin until March /10, unless the study reveals that we may benefit longer. That remains to be seen. 

    Fightinhrd123- Yep, definitely hard to tell about nodes after chemo. Glad to hear that the chemo crushed those nasty things!!!

    Anjo74- What is the AE37/GP2 vaccine trail all about? Could you please provide more info?

    Luvmyself/Jill - I am so sorry that you have done this several times now. I am glad to hear the skin mets are gone. I am sending you positive thoughts and pray that your PET is clear and shows NED! You much deserve a break, talk about an emotional roller coaster and the havoc your body has gone through. How did you find the Navelbine?

    Melinda41- I see that we were diagnosed around the same time.

    gogo_xago- HER2+ is very aggressive. It's when the tumor presents an overproduction of the HER2 protein. The protein basically tells the cancer cells to grow faster and faster.

    Hope to hear from other girls out there...with either Node(s) negative or positive. Please continue to drop in!

    Edited: To include node - or +

    Frankie

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  • fightinhrd123
    fightinhrd123 Member Posts: 633
    edited May 2010

    Oh i forgot to add i am in the naratinib trial, so not really done with treatment yet, except im pretty sure im on the placebo :)

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  • ango74
    ango74 Member Posts: 255
    edited May 2010

    Frankie,

    The AE37/GP2 vaccine is for Her2 +.   It is suppose to reduce the chance of recurrence. It is in stage II now. I go every 3 wks and get 4 shots, 2 of each AE37 and GP2 peptide. In a nut shell this is raising your cancer fighting cells and teaching it to fight the Her2 + protien.  This is a good link explaining the trial although it is from when it was still in Phase l.

    http://journals.lww.com/oncology-times/Fulltext/2009/02250/GP2_and_AE37_HER_2_neu_Peptide_Vaccines_Show.20.aspx

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  • amlg1
    amlg1 Member Posts: 596
    edited May 2010

    I too am ER-PR- HER2+++, which is a rare combo for my ILC.I had 31 positive nodes.I will be on  Herceptin until Aug.

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  • Ca1Ripken
    Ca1Ripken Member Posts: 1,254
    edited May 2010

    I am ER+/PR+/HER2+, with N+.  No surgery yet, biopsy of 1 node so far.  Starting chemo 1st on 5/13.

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  • Gabrielle
    Gabrielle Member Posts: 73
    edited May 2010

    Hi,

    HER2 Neu/ 9 positive nodes out of 21/ Stage III ....  10.5 years out.  Smile

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  • Frankie_
    Frankie_ Member Posts: 422
    edited May 2010

    Hi Girls,

    Amig1-I have not seen another ILC with HER2+ (that does seem to be a rare combo).  Nice to have you join us here.

    Gabrielle- That's my middle name! YOU GIVE US SO MUCH HOPE!!! Thank you for joining us here! I didn't even realize that they did the testing for HER2 status back then. WOW, you have made my day!!!

    I still think that the HER2 (status) ALONE is quite infrequent to see on the boards. I hope to see some more ladies join in.

    Frankie

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  • cat60
    cat60 Member Posts: 61
    edited May 2010

    Hi Frankie,

      Im ER-/PR-, HER2+++....1 out of 26 nodes- Grade 2- IDC-4 A/C- Surgery-just finished Taxol/Herceptin 12 Treatments,  Onto Rads now...I know how you feel about being HER 2 +, it makes you feel alone sometimes, as so many women are not, well only 20 to 25 % of women are HER2 + that have breast cancer...

    My Onco said she wants me to start Tamoxifin after I complete radiation to reduce risk of new BC on good Breast ...but I thought that was only for ER+/PR+ BC ?? Any thoughts on that ? I am interested in the AE37/GP2 vaccine...havent heard of that ..

    Glad you started this thread Frankie.

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  • ihatescreennames
    ihatescreennames Member Posts: 35
    edited May 2010

    I am 33 y/o, 32 when diagnosed in Nov.  I am ER-/PR-, HER2+,Grade 3, BRCA-.  I'm either a stage 2B or a 3, but I haven't had surgery, so I don't know for sure.  My doc said it would depend on just how much node involvement there was.  At my initial core needle biopsy, one of the spots they biopsied was a node, and a subsequent MRI showed enlarged nodes.  So, we know I have lymph node involvement.  I finished neo-adjuvant chemo a little more than two weeks ago.  I had dose dense AC for 4 cycles, and then 12 cycles of weekly Taxol and Herceptin.  I have my first Herception only infusion scheduled for Friday of this week, and I will continue every 3 weeks.  Right now, I'm waiting for a call to find out when my surgery date will be.  I'm assuming in the next week or two.  I've opted for a bilateral mastectomy, though I only have cancer on the right side.  I will also have an axillary node dissection, and tissue expanders placed at that time.  When surgery is done, I'll have radiation as well.

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  • maryannecb
    maryannecb Member Posts: 1,453
    edited May 2010

    I will check in too.

     I will be 5 years out in September! 

     My life is absolutley running along as before.

    My second child is about to graduate from high school...who would think? I am so thankful for modern medicine and continued research...

    I may not be cured but I am living well and celebrate that every day.

     Life is good.

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  • Leslie1962
    Leslie1962 Member Posts: 233
    edited May 2010

    I am ER/PR neg, HER2+++ positive with many positive nodes. Went through 4 AC, 6 taxol, 2 taxotere and am continuing herceptin every three weeks. Starting rads next week for six weeks.

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  • annamari
    annamari Member Posts: 82
    edited May 2010

    Hi !!! I am Her2 +++  11cm x 6cm lesion with at least 3+ nodes.  Did 6 rounds TCH and continued to have another 11 Herceptin.  Had surgery Mastecomy 05/15/09 followed by 30 rads started05/15/09.  I am currently in the Neratnib Trial.  I could possibly be on the real thing as I still have a fair bit of diarrhea 4 months into it.  Good luck everyone

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  • Frankie_
    Frankie_ Member Posts: 422
    edited May 2010

    Hi ladies,

    I haven't checked in for a few days. I have started rads (2 weeks ago) and have had low energy.

    Cat60- Looks like your starting rads too. Funny, you should mention your Onc wanting to start you on Tamoxifen even through your ER/PR neg. I was just talking to my friend who has bc too but she is ER/PR + HER2+. We were talking about how someone could have a local recurrence and it come back ER/PR +. I was just saying why don't Onc's prescribe us Tamoxifen (as a back up). But seriously, you should ask your Onc what is his/her reasoning for wanting to do this? Do you know if your are weakly ER/PR positive? Perhaps he/she just wants to throw everything out you. If you happen to ask and find out for his/her reasoning, let us know!

    Leslie1962- I think were were in the chemo-Dec/09 group. Gook luck with RADS!

    Maryannecb-  I am so happy that you dropped in and that you are approaching 5 years!!! That's WONDERFUL and gives us so much hope!!!

    annamari-What's the Neratnib Trail about? Is it post herceptin treatments? 

    Ihatescreennames- Good luck with surgery. I hope all goes well and you have a quick recovery!

    Hugs,

    Frankie

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  • jc2010
    jc2010 Member Posts: 1
    edited May 2010

    stage 3b, Her2+ 16/16 positive nodes, reoccurance, just started chemo

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  • Annaanne
    Annaanne Member Posts: 190
    edited May 2010

    Hi Frankie:

    I'm 4 and a half years from surgery, 5 from dx.  Her+. er/pr-.  Stage 3a.  Did the standard treatments and am doing AOK.  

    Annaanne 

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  • LuvBitsy7
    LuvBitsy7 Member Posts: 1
    edited May 2010

    I'm new here  Smile but I'm glad I'm here.

    My Mom is in Stage 3 (we thought it was Stage 2 until today), HER 2+, ER/PR- and 5 of the 21 lymph nodes removed were positive. 

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  • Gayleebug
    Gayleebug Member Posts: 166
    edited May 2010

    Hey Frankie

    I think my "signature" has most of the details but yes, HER+ only, stage IIIa, grade 2-3, positive nodes before adjuvant chemo (TCH).  All clear (NED) after my first mast where they took ALL my nodes on my left (cancer) side.  Had prophylactic skin-sparing mast on my right side when I had bi-lat DIEP in Oct 09 (took no nodes taken, thank God).  Still NED after that path report.  Holding the terror at bay that the cancer may come back somewhere else (putting me in stage IV, of course), at least most of the time.  Have more "fine-tuning" surgery planned for better symmetry from the DIEP (make right breast smaller & lift it more) then nipples of some sort... possibly as same time.  PS wants me to wait on trials/vaccines until I am fully done with reconstructive surgeries.  I want this done with! so I am impatient.

    Thnaks for starting this thread, Frankie.  We are a rare breed. 

    Gayle

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  • Frankie_
    Frankie_ Member Posts: 422
    edited May 2010

    Hi: Jc2010-Looks as though you just joined this site-WELCOME! When were you first diagnosed? Sorry to hear about your reocurrence. Was it local? I hope you come back and let us know how you are doing.

    Annaanne -Glad to hear that you are doing AOK Wink

    LuvBitsy7- So glad your mom has you to support her through this. Welcome to this site. You will find many supportive women here to help answer any questions that you may have as you and your mom go through this journey!

    Gayleebug- Glad to hear your in the "fine tuning" phase of PS. You have been through a lot understandably you are impatient...I think most of us if not all live with fear of the beast returning.  I am so happy for you nearing your 2 year mark. Wishing you MANY,MANY,MANY years NED free!!!

    Frankie

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  • raluca63
    raluca63 Member Posts: 20
    edited May 2010

    I am in the same category: ER-,PR-,HER2+++. I am 4 1/2 years out and enjoying my life like I did before my diagnosis.

    I was diagnosed with locally advanced breast cancer, with a very big14x12 cm tumor, 18 positive nodes, skin involvment and I am still here after more than 4 years from the day I was diagnosed and still cancer free. I had 4 rounds of AC, 4 Taxotere and Herceptin followed by radiation and 1 year of Herceptin .

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  • nobleanna007
    nobleanna007 Member Posts: 641
    edited May 2010

    1s one t.- Thank-you Frankie for starting this thread!

    As I have read through posts I have yet to see someone who is ,ER+/PR+/Her-2+++ stage 111a, 5/28 nodes+. Have had Bil.W/recon. had one breast rejection so stil dealing with it. Definatly have lasting effects from this all. I still after 3 yrs need more reconstruction, Hystroctomy, etc. feels like its never ending, and until its all done it is always hanging over me.

    I could care less if I only had one breast done but having 2 and one being rejected and having side effects from chemo etc. sucks!! I feel like by the time I have everything done I will be facing it al over again.

    Not trying to not feel positive but realisticllay it will come back at some point. We never know!!!!

    Thanks for listening and I wish you all the best!

    B

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  • Pure
    Pure Member Posts: 1,796
    edited May 2010

    I am going to stop in to say that NO realistically  it's not coming back -in fact it's the other way around. So for those of you reading that comment written above that "it will come back at some point", know the odds are in your favor and the end result is not is always coming back.  I hate comments like that-it brings us all down.

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  • Frankie_
    Frankie_ Member Posts: 422
    edited May 2010

    Hi: raluca63- So glad you stopped in to share your status. That's wonderful news and very inspiring! I too had quite a large tumor. I hope that it's possible for me too to got back to my life before bc. Thanks you made my day Laughing

    nobleanna007- You have gone through so much after 3years! I wish you all the best for your upcoming breast reconstructionget stuck wit surgeries. I understand that you just want to get this all over with and move on with your life!  I think many of us have fears that this MAY come back (after all that we have gone through). I know that I am scared with thought of the possibility that it may indeed rear it's ugly head BUT I try to fight those thoughts (difficult at times). As Pure states (the statistics) are higher that is WONT come back! That's what I am banking on! I created this thread to seek out or (POLL) Stage 3 HER2+ only gals -as I seemed to notice more dual/triple girls here (like yourself) on the Stage 3 forum and less HER2+ (only) girls. 

    Pure- Thanks for chiming in and reiterating that the "odds" or in our "favor" that it WONT return...I know that I need to hear these comments more often as I often worry or think about the chance of it coming back. Yell

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  • Frankie_
    Frankie_ Member Posts: 422
    edited May 2010

    I was browsing in the HER2+ (Forum) and found on page 15 an older thread was created there to looking for HER2 Positive and Hormone Negative Survival Stories. I saw a couple of the girls (above) posted there as well.

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