Any ER+, PR+, HER+ members?

PlantLover
PlantLover Member Posts: 622

I've only been active here for a short while, but it seems I'm not seeing many folks that have the same markers, if that's the correct word, as I do.  Even if you're not stage III, feel free to jump in.  I'm sure there have got to be some others on here & I'm just missing it.

I'd really like to know what treatment plans others have been through.

Thanks!

Comments

  • mmm5
    mmm5 Member Posts: 1,470
    edited October 2010

    I am triple positive as well, although barely on the er positive, had 6 rounds TCH then continued Herceptin for balance of a year.

  • lago
    lago Member Posts: 17,186
    edited October 2010

    I'm only stage IIB. Just got lucky with the nodes otherwise I would have been a IIIa too.

    When I first landed here I didn't notice many triple + but  you'll start to see more. Remember that HER2+ status only hits 20%-25% of us. Then within that finding triple+ makes the percentage even less.

    Just click on my name and read my bio. The details are all there under "Biography. BTW we are the same age too.

  • sheila888
    sheila888 Member Posts: 25,634
    edited October 2010

    I'm also a triple positive. There are some women with that DX.

    I had A/C 4X Taxol 4X Herceptin for one year once a week and radiation.

    Again this was at 2005 and some Oncologists want different chemo regimens.

    Good Luck.

    Sheila♥

  • geewhiz
    geewhiz Member Posts: 1,439
    edited October 2010

    I am...TCHx6 then herceptin which ends this December! Woo hoo!

    I am on tamoxifen, but I wonder at my age (44) if I should have an oo and switch to an AI. My onc says that there is not enough study to warrant it. Still remains a HUGE question in my mind.

  • krcll
    krcll Member Posts: 343
    edited October 2010

    Triple positive here, too. I did FEC100 x 4 (normal in Europe and Canada instead of A/C) and Taxol x 12. I was on the ALTTO trial and ended up on the Tykerb only arm. That means I took Tykerb instead of Herceptin and I am hoping that it will be proved that Tykerb is just as good as Herceptin, but also gets by the blood/brain barrier.... I'm done with Tykerb in December.

  • PlantLover
    PlantLover Member Posts: 622
    edited August 2013

    Lago ... yep, with HER2+ only hitting about 1 in 4 I know it further decreases the chances of finding all three.  I'm sorry but we are not the same age. My birthday is in September so you are MUCH older * wink *

    I had Carboplatin, Taxotere & Herceptin (6 rounds) before surgery, bilateral, 7 weeks of radiation, and am almost finished with 9 rounds of Navelbine. Doc is letting me skip the last three we previously had scheduled. I will be on Herceptin until the end of 1 year.

    I've seem some posts here that mention being on Herceptin for longer than a year.  My Doc seems to be adamant that it will only be for one year.  Is the two year treatment a trial?  

    geewhiz or mmm5... what is TCH?  Also what is an oo and AI?

    I also don't know what it means when someone says they are just barely ER positive.  I don't recall being told a percentage.  Should I find out and does this factor into treatment?

    Chemo put me into menopause.  I haven't had a monthly cycle since Jan. 2010.  My doc told me that we can simply monitor my ovaries and that it will not be immediately necessary to start tamoxifen.  He mentioned he will be starting me on something called pemedrian - every 6 months for 5 years.  We were talking on the phone and I must have misunderstood the name because I've googled and can't find anything close to the spelling.  Anyone have any ideas?

    Thanks!   

    edit ... krcll ... what is FEC100?

  • PiscesMoon
    PiscesMoon Member Posts: 206
    edited October 2010

    i'm triple positive.  no nodes, though, thankfully.  so i believe that puts me at stage 2a.  i had a uni MX (no recon), then 6 rounds of TCH (no radiation due to no nodes) and will be taking herceptin every three weeks until early spring of next year.  onc wants me to take arimidex but i will talk to him about that when i see him.  :-)

  • krcll
    krcll Member Posts: 343
    edited October 2010

    Bec- FEC100 is 5-fluorouracil, epirubicin and cyclophosphamide. The "normal" dose is 60 or 75 mg/m2 of Epirubicin (which is FEC60 or 75), but for those of us with cancer in the nodes, we get FEC100 (100 mg/m2 of Epirubicin). Epirubicin is red like Adriamycin and I think does basically the same thing. My onc said that Epirubicin is easier on the heart than Adriamycin. I have also heard that it is more expensive than Adriamycin. I don't really know why USA uses A/C while Canada and Europe uses FEC. I have noticed that there are some HER2+ Americans that use FEC and I assume that since Herceptin is hard on the heart it is then judged better to use Epirubicin.

    I think it is basically thought that one has gotten most, if not all, of the effect out the Herceptin in the course of one year. There was a study in Finland that had the women  on Herceptin for only 16 (?)  weeks and they did almost as well as the women taking it for a full year. There is a study comparing one year vs. two years (HERA, I think it is called) but the results aren't out yet.

  • lisasinglem
    lisasinglem Member Posts: 315
    edited October 2010

    I'm triple positive.  Because my tumor was exactly 2cm, my onc put my "stage" right on the cusp of I and II, so I chose to be Ia, because I liked it better. :-)  I had a lumpectomy, no node involvement.  I'm in the midst of TCH (Taxotere, Carboplatin, Herceptin).  I just had tx #4 of 6, then I will continue with Herceptin until August 2011. I will also do rads, due to the lumpectomy.  My onc is wary of tamox because of some recent studies showing it isn't quite as effective on Her2+++ patients, so he wants to shut down my ovaries (or remove them) and put me on Arimidex.

    Don't worry Bec9861, you are not alone.  You can also look at the Her2 Positive boards, and will find many more triple positive people.

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

    To be honest I don't want to be on Herceptin for more than a year. You can build up a resistance to it. Just in case there is a problem in the future I want this drug to still be an option for treatment if I need it. HER2+ status doesn't just pertain to breast cancers.
    ----------------------------------------------------

    Al is aromatase inhibitor ( only for post menopausal women chemo, surgical or natural induced… doesn't matter how).

    oo is oophorectomy

    TCH seems to mean Taxol/Cytoxan/Herceptin.
    Not sure if it also means Taxotere/Carboplatin/Herceptin

    just barely ER positive. According to my path report anything 1% or over is considered positive. I don't think all places used the same percentages though.  I was 30% ER+ and 5% PR+. IMO I am just barely PR+
    __________________________________

    Bec9861 We were born in the same year but if you want to say you are younger go ahead even if it is a few months. ;-)

  • PiscesMoon
    PiscesMoon Member Posts: 206
    edited October 2010

    'TCH seems to mean Taxol/Cytoxan/Herceptin.
    Not sure if it also means Taxotere/Carboplatin/Herceptin'

    i think it can mean both.  :-)

    ~M

  • Drim
    Drim Member Posts: 302
    edited August 2013

    I'm triple positive as well. Due to my low grade and low intermediate oncotype score I was on Taxotere/Cytoxan x 4 with Herceptin which I started after my 2nd TC. I think when people say TCH they are most often referring to Taxotere/Cytoxan/Herceptin. Herceptin is thought to work well with the taxanes which includes both taxotere and taxol.

  • Xena58
    Xena58 Member Posts: 5
    edited October 2010
    I am highly triple positive, diagnosed at age 47 in 2006.  I had 4 rounds of AC every two weeks, then 12 weeks of taxol and herceptin together weekly, followed by 10 more months of herceptin every three weeks.  No rads.  Bilateral mx with gummy implants.  I am currently on femara (which I started when I went to herceptin alone) for 1.5 more years (5 total).  Tumor 1.5 cm with one positive node.  I am doing extremely well but the sudden menopause stinks.  I did everything in the Mojo thread and still, sex is very painful.  But I will take it--I have outlived my cousin who was diagnosed at the same age and only lived four years.  Exercise, good for you food, a purpose in life, and strong faith keep me happy!Smile
  • mary840
    mary840 Member Posts: 7
    edited October 2010

    I am also triple positive.  4 X AC followed by 12 X Taxol/Abraxane, had an allergic reaction to Taxol so switched to Abraxane.  Modified radical mastectomy.  6 weeks radiation.  Herceptin for a year.  I have a gene mutation making me susceptible to blood clots ruling out Tamoxifen.  I received my first injection of Zoladex and will be starting on an Aromatase Inhibitor (AI) soon.

    I haven't had a period since chemo either, however, my estrogen levels are high enough that I'm still considered pre-menopausal.  This is what warrants the Zoladex injections.  I'm considering having my ovaries removed so I won't need monthly injections for years to come...  I hate the idea of more surgery, does anyone have any experience with the side affects of ovary removal?

  • worldwatcher
    worldwatcher Member Posts: 205
    edited October 2010

    Triple positive.  Quality of life at age 71 my paramount concern. Refused chemo. Considering hormonal. 

  • Omaz
    Omaz Member Posts: 5,497
    edited October 2010
    Hi Bec9861 - I am triple positive too.  Have done 3 rounds of TCH (Taxotere/carboplatin/herceptin) out of 6, continuing the herceptin until next August.  Had lumptectomy and will do radiation therapy after the TC part.  Then hormone (or really anti-hormone!) therapy, don't know which one.  Chemo has put me into menopause too, lots of hot flashes since the second treatment!  For me it will probably be permanent since I am 51 even though I was having regular periods before the breast cancer.   Welcome!
  • PlantLover
    PlantLover Member Posts: 622
    edited October 2010

    Thanks everyone!

  • Soccermom4force
    Soccermom4force Member Posts: 631
    edited October 2010

    Me too!

    AC/T dose sense ,1 year weekly Herceptin and 4 1/2 years Tamox then Arimidex.

  • mimi791
    mimi791 Member Posts: 92
    edited October 2010

    Hi,

     I am also triple positive.  I did 4 rounds of dose dense AC and then 12 rounds of Taxol & Herceptin and then another 9 Herceptin treatments to balance out my 13.  When I did it with the taxol I was onl getting a third of the dose I got when I did it by itself.  I also had 28 radiation treatments.  Since I was barely 40 when I was diagnosed, my onco wanted to throw the kitchen sink at me- which was fine with me!

  • whatRstatsanyway
    whatRstatsanyway Member Posts: 53
    edited October 2010

    Hi Bec9861 - welcome!

    I am triple positive too!( very high for all 3) Had a unilateral mastectomy and SND. Have done FEC100 X 6 followed by Herceptin at 3 week intervals. Had to stop when ejection fraction went too low after treatment #10 - restarted again 3 weeks ago and ejection fraction is 9 points above what it was before this BC ride began! I'm also on Tamoxifen, soon to be changed to an AI as I haven't had a period in over a year.. So far, so good. Looking forward to loosing the PICC line on December 31. I bike, walk and stay very active - I refuse to let this problem overshadow everything else. It's always there (all I have to do is look at a mirror) but I try, as hard as it is, to focus on living with cancer, not dying from it!

  • Omaz
    Omaz Member Posts: 5,497
    edited October 2010
    Hi whatRstatsanyway - How was the FEC?  I haven't seen this treatment as often for the triple positives.
  • whatRstatsanyway
    whatRstatsanyway Member Posts: 53
    edited October 2010

    It was a bit easier, at least for me, than 3 FEC/3 taxane. I had a major issue with avoiding neuropathy, so I took my chances with cardiomyopathy instead! Had the infusion on Thursday afternoon, took Friday off and was back to work on Monday. I was able to give myself Neulasta on Friday - I took Claritin 2 days before, and after, and, luckily, did not experience any pain. I had a script for odantasedron (Zofran) for nausea - took it Friday and Saturday, as a precaution, but was not seasick. My white cell count dropped by the sixth infusion, but was high enough to be in the acceptable range to continue. The MUGA was 51 at the start and 53 at the end (virtually the same). I stayed hydrated throughout the infusion (I can't look at gatorade- I would down 3 bottles during the two hour drip). Used Biotene mouthwash religiously (seemed to work better than the bicarbonate/lidocaine/antibacterial cocktail that the pharmacist made up - but that's just me) .

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