Triple postive??

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kimbly
kimbly Member Posts: 398
Triple postive??
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  • kimbly
    kimbly Member Posts: 398
    edited March 2008

    Anyone else out there triple positive?  I am and well read alot on these boards but can't say I have seen anyone else that is her+ and er/pr + as well. 

  • kcq
    kcq Member Posts: 166
    edited March 2008

    Hey there--

    I am triple positive.  I was DX on 5/1/07-had 4 AC/4Taxol and currently doing Herceptin and Tamoxifen.  Had mast and recon in Novembwer 07.  Last Friday, I received the awesome news that my liver and breast (good breast) MRI's are normal.  Cool  Chemo has officially placed me into Menopause.  I am very thankful for Herceptin.  I have an echo scheduled for Friday.  Hoping that my heart continues to do well with the Herceptin.  I lost my mom ten years ago to BC.  I wish that Herceptin was around for her. 

  • Jenniferz
    Jenniferz Member Posts: 541
    edited March 2008

    Hi Kimbly,

    This causes a stir when I say this, but I am triple positive, and didn't have chemo or Herceptin.  Wish that I did.  This was two years ago, and at that time, I think you're tumor had to be at least 1 cm before you got chemo or Herceptin.  Mine didn't come close. Would I have taken it?  Yep. Not sure what the thought it now on how to treat tumors as small as mine.

     I am on Femara only.

    Jennifer

  • jbart62
    jbart62 Member Posts: 1
    edited March 2008

    I'm new here and I was dx on 10/20/07.  I am also triple postive.  My dx 1.2cm IDC ER/PR+ and HER2+.  Jeannine

  • thaltom
    thaltom Member Posts: 1
    edited March 2008

    We found out my wife is triple positive but still not sure what it means. I tried to google it and everything comes back triple neg.

  • kimbly
    kimbly Member Posts: 398
    edited March 2008

    I did the google thing too and came back with alot of triple negative stuff but no triple positive.  I am to have my last chemo treatment this thrusday which is Taxol/Carboplatin and herceptin.  I will remain on herceptin until December 08.  I am in chemopause right now but before this was experiencing perimenopausal symptoms.  Wondering what they do to figure out if you are in menopause permanently.  I am 46 yrs old.  I had two tumors in my left breast 1.2 and 1.8 and then a small DCIS as well.  The chemo has shrunk them to nothing.  I havent had any surgery yet but will have a mast. in the near future with immediate recon.  I am pretty nervous about this part now. 

  • miss-di
    miss-di Member Posts: 161
    edited March 2008

    Dear Kimbly,

    I answered on the "Eye Problem" thread.

    For those who didn't read that post, I will put it here.

    I am triple positive, this time.  My first time,  was 5 years in 12/07, I was HER2-, this time HER2+++.  Also, I was highly ER/PR+ first time, slightly positive this time.

    I had a quadrantectomy, chemo and rads first time.  This time Herceptin and Arimidex.  I had an oopharectomy in 2001, so this has obviously taken away alot of the estrogen.  I am 54 now.

    The Herceptin is working, I went from NED to mets in one day so to speak.  The 1st report this time stated "too many spots to count" in chest, abdomen and liver (3). Also had large area of "clumped" lymphs in clavicle.  These were removed.

    My scans in Jan came back with only 3-4 spots of concern, down to 1 in liver.

    As I stated though, I am happy with these results, but I do not feel "good".  Rescanning in May and my onc may take me of Herceptin for the summer. (this scares and makes me happy.)  I have been on Herceptin since Aug. 07.  Onc states she wants me to break because my heart needs it. I haven't really seen others on this site "taking a break" but my Onc wants to use it as long as we can.

    My best to all,

    Di

  • DR30
    DR30 Member Posts: 6
    edited March 2008
    Hi, Thalton.  Triple positive means that the cancer has positive receptor for progesterone and estrogen hormones and it's Her2 positive.  Sometimes cancer cells uses hormones to feed themselves, Her2 is a protein, so I've read, that tells the tumor to grow fast.  I'm also triple positive and so far I've done quimo, radio and next hormone therapy and Herceptin for 1 year.
  • pepperpot
    pepperpot Member Posts: 9
    edited March 2008

    Hi Kimbly,I am another triple +,was diagnosed may 06,aged 44,infiltrating lobular,  had a 2 1/2 cm lump removed by WLE,had 6 x fec chemo,15 x rads am now on tamoxifen.,was due to have 18 x herceptin but unfortunatly couldnt go ahead as muga scan reading on heart was considered unsafe for herceptin.....BUT.....good news is NED...so far so good....onwards and upwards Pepper...xx 

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited March 2008

    Another triple pos here.

    Did CAFx6 six years ago and less than 2 years of tamoxifen. Still NED, doing well. Didn't do Herceptin.

    Using exercise to be within proper BMI, moderate amount of sunshine as often as possible (when I can get it), organic diet, no sugar, no red meat, and balancing omega-3 fats with omega-6 fats.

    Going for at least 20 more,

    AlaskaAngel

  • caligal
    caligal Member Posts: 67
    edited March 2008

    I am triple positive too.  Almost done with taxol/herceptin combo.  Then 15 of herceptin til the end of the year.  There is another good website for triple positive www.her2.support.org

    hang in there. 

  • flyrzfan
    flyrzfan Member Posts: 557
    edited March 2008

    Hey girls ~ I just got my lab report faxed over and apparently I am +++ as well. My only question is this ~ from what I read, I gather that I can opt for a partial hysterectomy as opposed to doing the Herceptin x1 weekly for up to a year. Am I getting this right? I already have low blood pressure (average is 85/60) and have had angina attacks in the past because of it. I do not think I will be a candidate for Hercepting ~ but would take out my ovaries in a heartbeat to better my chances for a cure. I have my 1st appointment on Friday and intend to discuss a bilateral at that time ~ should I also bring up the hysterectomy now so they can plan my treatment to include that?

  • Caya
    Caya Member Posts: 971
    edited March 2008

    I am also triple positive, diagnosed at age 48.  Apparently we are a very small club, since only about 25 - 30% of BC cases are Her2+, and of those, most are ER-/PR-. I think I read somewhere that we are less than 10% of the Her2+ club.  I know my onc. was very surprised that I was Er+/PR+ and Her2+ - and highly ER+(90%) and PR+ (50%).

    The good thing about this combo is that we can get the anti-hormonal drugs (Tamoxifen and the AIs) as well as Herceptin - the wonder drug that has basically rewritten the Her2+ survival stats .

    I did FEC x3, Taxotere x3, and have 3 Herceptin infusions to go (every 3 weeks for one year schedule). I had 2 tumours in right breast, 1.7 cm. and 1.0 cm. had a MRM - did not need rads as all 16 lymph nodes were clear.  I had a mammogram and breast u/s in June 2006, showing nothing - went in for a breast reduction in October 2006 - my PS found the 1.7 cm. tumour.  Talk about shock.

    But I'm almost done treatment now, and being stage 1 etc., my onc. gives me a great prognosis.

  • miss-di
    miss-di Member Posts: 161
    edited March 2008

    Dear flyrzfan,

    I don't know about the partial hysterectomy thing.  I had an oopharectomy 1 year before my first breast cancer.

    An ooph may help with er+ cancer, but I still had to have chemo and radiation. First cancer er/pr+ Her2-.

    My second cancer was er+/pr+/HER2+++.  I don't think the ooph will help the Her2 portion as it is something totally different, your body is making to much human epithelial growth factor.  Herceptin is an antibody.

    Remember, my ooph was 7 years prior to my second cancer.  I would double/triple check on that.

    My best to all,

    Di

  • esserbre
    esserbre Member Posts: 82
    edited March 2008

    I am also +++.  Although these are indicators of an agressive form of cancer, the good news is that we get the new treatments.  I had 6 months of herceptin, then my LVF dropped too much, 3 times and you're out my onc said.  So that was that, now I am on arimidex for the 5 years.  The meno symptoms aren't much fun but I'm glad for the cancer fighting factors. 

  • KLynn
    KLynn Member Posts: 1,407
    edited March 2008

    Hey there fellow trip +++'s,

        Another trip here. I was dx almost 8 yrs ago, this May coming.I was just about to turn 39. I was in the origianl herc. trial, where half of the woman got herc for 6 months and the other half for 1 yr. I was put into the year program. I also had chemo and rads. Then tamox. for almost 5 yrs.  thats when I  had my recur to the lungs. So back on chemo and Herc. It took a few different chemos with the herc. and almost 2 yrs to go into remission. It really seems like forever the second time around, but I have been off of chemo and only on Hercp. now for about 5 months. I get hercp every 3 weeks, and I also get lupron shots  monthly to shut down the ovaries( I 've been getting them for about a yr and a half now. Still haven't gone into full menopause with all of this....I get 2d echos every 3 months , and so far everything is fine with the heart, I'll be on hercp. for life I suppose...Just had scans and everything seems fine for now..

        Yes trip+++ is aggressive but like esserbre said , we do have alot of options with treatment ..My mother also died of bc and I wish Hercp. had been available to her then... Every day is another day that a new drug could be found, so I'll take the se's and keep taking the hercp. until then...

        Best wishes to all of you...Hugs KLynn 

  • Maire67
    Maire67 Member Posts: 768
    edited July 2010
  • CindyB
    CindyB Member Posts: 43
    edited April 2008

    Hello all,

    Yes, triple positive is odd and I'm one of them too.  Also an oddity - grade 1 (most are 2 or 3) and that caused us to send pathology on to Mayo to be redone and confirmed.  I'm doing 6 of docetaxel, carboplatin (1 down), year of hercepting (2 down), radiation, and antihormone therapy.  Basically we're doing all we would have done for a more aggressive and larger tumor.  Mine was 0.7cm, node negative, grade 1, stage 1b.

    What a journey we're on!

  • blzngsam
    blzngsam Member Posts: 14
    edited April 2008

    I too am triple positive and grade one.I did 6 docetaxel,carboplatin and 6 months herceptin....3 down,then radiationMy tumor was 0.8 cm node negative grade 1 stage 1 b

    It is quite a journey. 

    Can anyone tellme what the side effects of the herceptin alone are besides the heart weakening?

  • CindyB
    CindyB Member Posts: 43
    edited April 2008

    Heart issues are the most significant issue, so far as I know.  I believe also rare possibility of lung/breathing complications.

  • TriciaK
    TriciaK Member Posts: 362
    edited April 2008

    Another triple positive here too..three years out this summer!

    For herceptin side effects go to www.herceptin.com I had very little side effects with it other than a little achey for a day or two. I had my ooph in '06 so I'm thinking thats helped lots to keep me ned tooSmile

  • swimangel72
    swimangel72 Member Posts: 1,989
    edited April 2008

    Looks like I'm joining this club - my oncologist just informed me today that my Fish score was positive - so that makes me a triple positive now. I had been so confident that I'd only need the anti-estrogen drugs since my tumor was less than 1cm and Grade 1 ("well-differentiated) with no lymph-node involvement, my Oncotype DX score was very low AND my BRCA1 and BRCA2 scores were negative. So it came as a complete shock to finally hear that the Fish results were positive. Surprised

    One funny emotion - having learned that my tumor was more aggressive than previously thought makes me happy I opted for the mastectomy......even after a month, I still had doubts that I did the right thing (with the Diep reconstruction - the staph infection - the stiff arm, etc etc). My oncologist is requesting a second opinion on the Fish report though because he was so surprised to see it read positive.......and because he doesn't trust Quest labs (they sent my original samples out for the Fish test). I'll know in 4-5 days if indeed I need chemo...........but as I've felt in my bones from the start of this roller-coaster ride - I feel like I've been strapped into the bad-luck seat and it's best to keep my eyes wide-opened and be ready for anything......sigh.....Frown

  • Sig
    Sig Member Posts: 138
    edited April 2008

    I am also triple positive, multifocal tumor size 2.6 cm and another < 1 cm. Grade 2, 2/6 positive node. dx Jan 07, Left mastectomy, did 4 AC and 4 Taxol every 3 weeks. Herceptin till Jul 08 (1 year). 30 Rads. Elligard shot every 6 months to suppress my ovaries and femara. So I am really hoping that all this will keep my cancer at bay.

    Sig

  • oldcat46
    oldcat46 Member Posts: 53
    edited April 2008

    I too am triple positive and getting Herceptin once/wk with 8 mon to go (following A/C X 4, Taxol X 4).   My onc put me on Arimidex recently and so far so good with no se's.  When I had surgery last Sept, my surgeon said it was good to be triple positive (I think she was trying to throw a good light on everything) since there were txs for each.  I wasn't too happy about the Her-2+ part though.  My path report didn't say how aggressive it was, just that it was positive.   I could accept that I had bc but not that it was Her-2+ -- that part took a long time to sink in and maybe it hasn't yet. 

    But I'm SO glad we have Herceptin, and Tykerg and other targeted therapies are on the horizon.  Last fall I read a book called Her2: The Making of Herceptin, a Revolutionary Treatment for Breast Cancer written by Robert Bazell.  It tells about the discovery of Her2, the clinical trials with Herceptin, the money and politics involved, etc. and I realized that there were many stops and starts before this drug was approved.   We are so fortunate to have Herceptin available to us.  

  • angie27
    angie27 Member Posts: 863
    edited April 2008

    Hi everyone

    I am also in the triple positive club, I start chemo 4/22, and very scared about it, however I am greatful that we have the right drug to treated. Having said that, does that mean that all the triple positive ladies, have no other alternatives?

    any feedback?

    thanks 

  • WendyV
    WendyV Member Posts: 596
    edited April 2008

    I'm triple pos too!  Don't panic by the Stage IV dx.  I was stage IV on initial dx and I'm here to tell you that Herceptin works!!   I'm not NED but I went from an initial dx of 27 spots on my liver and 2-4 small spots on my spine down to 3-5 small spots on my liver and stable to healing lessions on my spine!  I did 6 rounds of chemo along with Herceptin and I'll be on Herceptin for as long as it continues to work - which I hope is a very, very, long time.  In a very odd way, being stage IV, I'm glad to be triple positive as it gives me  alternatives to chemotherapy to keep my cancer under control!   It's been 1 1/2 years since my inital dx and so far so good.  Scans coming up next week and I'm hoping I continue on the herceptin/arimidex ride!!  But, even if the news isn't the greatest, I'm still encouraged as Tykerb/Xeloda is approved for Her2+ cancers and I've also found 2 other trials in Phase II testing that are specific to women with Her2+ cancers and of course there are tons of hormonal treatments out there!!!

    So......I'm hoping my story didn't scare anyone off, but instead gave you confidence that the treatments for triple positives do work!

    Wendy

  • KLynn
    KLynn Member Posts: 1,407
    edited April 2008

    Hey Wendy,

        I REALLY like your positive attitude!!!!! As I said (up above back in March) I am also trip+++ and stage IV, and on herc. as long as it works. Herc. has been very kind to me!!!! Good luck , staying positive is half the battle...

        Hugs KLynn 

  • thetrumumshow
    thetrumumshow Member Posts: 72
    edited April 2008

    Hi there, I'm triple positive too although I "only" have DCIS.  My hospital (The Royal Mardsen in the UK) routinely test hormone status of all patients in case that is info that is needed further down the line.

  • talbrig13
    talbrig13 Member Posts: 488
    edited April 2008

    I am triple positive, dxd in Dec 2006.   I did 10 Taxotere, Carboplatin, Herceptins, followed by a year of Herceptin.  Now on Femara.    Doing well...having a mammo next week, so we will see.  

    Best of luck to all of you!

  • susansblues
    susansblues Member Posts: 88
    edited April 2008

    Another triple positive here! Dx in Feb with IDC (including DCIS), stage 2, grade 3, ER+ (70%), PR+ (50%), Her2+. Primary tumor was approx 3.9cm x 3.4cm, or something like that. Had a wide lumpectomy with ALND 3/13; surgeon took 2 add'l tissue samples, adjacent to/just outside of tumor's immediate margins. Good thing he did that; immediate margins were clear, but one of the add'l samples had "islands" of cancer cells. Approx 3 or 4 nodes were positive out of 21 or 22 taken. (The positive nodes were clumped together; difficult to tell just how many!) Went back for a re-excision/wider lumpectomy 4/3; surgeon took 3 generous samples. Had post-op 4/10, all samples were clean! I'll be starting chemo on Monday (4/14): A/C x4 dose dense, followed by Taxol + Herceptin (12x weekly). Then I get radiation (33 tx, 5x/wk, for 6-7 wks), plus continuing on Herceptin once every 3 wks, til I've been on Herceptin for a year. After radiation, I'll get some hormonal therapy t/b/d. (Presently in that gray area between pre- & post-menopausal, so I think my onc is waiting to see where I am when I'm ready to start that. Right now it looks like Tamoxifen, but that could change.) Had bone & CT scans (chest, abdomen, pelvis) before 1st surgery; no sign of cancer anywhere else. I had a Muga scan on 3/27 & will have another approx 12 wks into treatment (I think - don't have the schedule in front of me) & every 12 wks til I'm done with Herceptin.

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