Anyone er+, pr+ and HER2 +

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  • onlygirl4
    onlygirl4 Member Posts: 18
    edited March 2007
    Hi everyone. I stumbled onto your post tonight and was very interested to read the responses. I am not PR+ but am ER+, Her2/neu positive, Grade 1, with no lymph node involvement. My tumor was 2.5cm. My oncologist gave me the choice of just doing Herceptin or doing the Carboplatin/Taxotere/Herceptin route. It was an agonizing decision but I chose to do the chemo route. I haven't started yet and am terified if I made the right choice. Any comments?

    Beth
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  • Caya
    Caya Member Posts: 971
    edited March 2007
    Hi Beth,

    Glad you chose the chemo with Herceptin route. Recent studies have shown that Herceptin given either with chemo or right after chemo have lower recurrence rates. Also your tumor was over 2 cm. - even with no node involvement, you want to fight this beast with all the ammunition out there. Don't be terrified - chemo is very do-able, just keep reminding yourself you are killing any lurking cells out there, especially the HER 2 neu+ ones.
    all the best
    caya
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  • BethNY
    BethNY Member Posts: 2,710
    edited March 2008
    beth i think you definitely made the right choice...i second what caya said...
    if cancer ever came back, you'd kick yourself for not doing everything in your power now to kick the beast swiftly in the butt.
    chemo is totally doable... and it's beter to hit it hard the first time around.
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  • terrirites
    terrirites Member Posts: 16
    edited March 2007
    Hi Beth,

    I'm on the same treatment plan as you. I have 2nd round tomorrow. I'm also glad you decided to go chemo. Just remember that treatment is only temporary. I find it helps to just look forward. I keep "June 15th" in mind at all times, as that should be my last treatment. It such a small amount of time in relation to all the many years we will be on this earth!

    So far my scariest moments have been relating to side effects that I thought were lethal... only to call my Dr and him say, "oh yeah, that's normal, don't worry about it!" ha ha. I mentioned before I gained 8 lbs in one week and was sure I was having congestive heart or kidney failure. Doc was like, ok, here's a diuretic. Drop me a line if you want to talk side effects... sometimes it helps seeing other people are experiencing the same ones as you.

    So far for me it's not been nearly as bad as I thought it would be. The first week after tx is the worst, then it gets so much better... today I feel fantastic, only to know that tomorrow I after tx #2 I'll be feeling a little crappy again. At least I know after about 6 days, I'll be bouncing back again.

    I can't tell you how much all the girls here have helped me! What a great place to come and be encouraged!
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  • lwiseblau
    lwiseblau Member Posts: 4
    edited March 2007
    I'm triple positive, too. I was diagnosed 7/06, 4 cm tumor (which I was told was big, yet still early--okay, whatever. I'll take early). I was staged at II, grade III. I had a lumpectomy in July; A/C Aug-Oct; taxol/herceptin Oct-Nov; herceptin alone evry three weeks until Oct 07. I had radiation Jan-Feb and just started tamoxifen today. Good times--ha, ha!

    I'm hanging in there, though I have my bad moments. I tend to be an optimist, though :-)



    Laura in Ohio
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  • Jackie_C
    Jackie_C Member Posts: 4
    edited March 2007

    I too am triple positive IDC, stage 2, one +node. Thank goodness for Herceptin & Hormone therapy.

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  • debic
    debic Member Posts: 216
    edited March 2007
    I too am triple positive. Still trying to understand what that means. I was told I was HER2 neg then it changed with the final report to positive. Does anyone know what the ratio or scale is? I was 1.05 cm IDC, no nodes, stage 1 grade 3 I am starting 4 DD of AC 12 of Taxol with Herceptin.

    Debi
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  • jan125
    jan125 Member Posts: 411
    edited April 2007

    It means that we are lucky. We have chemo, hormonals, and targeted therapies (herceptin and tykerb) in our arsenals!!

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  • debic
    debic Member Posts: 216
    edited April 2007
    Jan
    Thanks for the answer. I have tried to read about it but not much positive but the group on this post seem really positive and I trust ya'll more then the reports.
    Debi
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  • lrs
    lrs Member Posts: 55
    edited April 2007
    Count me in as triple +++, Just starting radiation treatment at end of week. Will also get 4th herceptin treatment same day. First time without any other chemo drugs. I am pre-menapause my Doc was recomended chemical menapause first then surgery to remove overies along with Femera for 5 years. Alread did 4AC and 4Taxol (3 with herceptin).
    Has anyone else been given this option?

    Stage 2 grade 3, 5cm, no node, 100%ER, 25%PR, Her2+++

    Thanks LRS
    Were in it for the long haul!
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  • lwy
    lwy Member Posts: 153
    edited May 2008

    deleted

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  • colleen42
    colleen42 Member Posts: 50
    edited April 2007
    Count me in...I am also triple positive. Diagnosed in March 06 with IDC & DCIS. 2 cm, nodes negative. went thru 4 rounds of AC, then 12 taxol/herceptin..bilateral masectomy in Nov, exchange in March. Been on the "every three week herceptin till Aug 07. Also started tamoxifen Jan 1st..The side effects of the herceptin is really only the constant runny nose. The side effects of the tamoxifen is mild hot flashes, somtimes blurry vision....i complain about taking all this medicine, but when i read alot of these women posts i am thankful to have it!

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  • BeeMack
    BeeMack Member Posts: 40
    edited May 2007

    I'm a +++ myself. Just had the MRM two weeks ago. Awaiting removal of drain tube. Tumor 3CM, 4 nodes. Will see what the onc says after surgeon "signs me off".

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  • Dnicoletto
    Dnicoletto Member Posts: 76
    edited May 2007
    Hey Colleen! (We started chemo together) Good to see you !
    Count me in with the overachievers. I am a +++ Stage 2 IDC, (2) nodes positive. Chemo, herceptin, and a mast.

    Question ladies - Is the Arimidex keeping your hair from growing in fast? It is taking forEEEEEEEEEEEver. I am tired of looking dorky.
    ~Dorie
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  • Lakonia
    Lakonia Member Posts: 29
    edited May 2007

    Hi Caya
    In your post above you mention 'recent studies'.
    Do you have references please?
    thanks
    lakonia
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  • Caya
    Caya Member Posts: 971
    edited May 2007
    Lakonia,

    If you type in Herceptin Plus Chemotherapy Improves Survival into the Search bar on the main breastcancer.org website, a number of articles on Herceptin will pop up - look for one called Update on Treatments for Her-2 Positive Cancer, and in general look at any articles on Herceptin.
    Also look into the Research News links by month - there are many articles and trial results published.
    caya
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  • Lakonia
    Lakonia Member Posts: 29
    edited May 2007
    Many thanks Caya
    Best wishes
    Lakonia
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  • BeeMack
    BeeMack Member Posts: 40
    edited May 2007
    Laura, Optimism is a POSITIVE. So if we are optimistic and keep ourselves uplifted with other folks "positive" could we say we are ++++? Keep the faith. \0/

    Becky
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  • BeeMack
    BeeMack Member Posts: 40
    edited May 2007

    Overachiever is a good word. So's overcomer. We are positive overachieving overcomers!!!! YES.

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  • LFE
    LFE Member Posts: 25
    edited May 2007

    I'm another triple +. I have made it thru 4 AC, 33 rads and now currently doing herceptin x 52 week and femara x 5 years. My onc was surprised that I was her2 + and even had them to review the fish to be sure. I didn't even bother to ask him why just when do we start.

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  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited May 2007
    I read through the posts and unless I missed somebody, StacyO and I are the farthest out from treatment/still NED.

    I missed out on dose-dense, have never had Herceptin, and have never had a taxane. I did have tamoxifen for a while after CAF.

    Here's a toast to us all!

    AlaskaAngel
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  • SusieSwan
    SusieSwan Member Posts: 111
    edited May 2007
    I'm aslo Er+ 990%), Pr+ (90%) and HER2 + (Ratio 5.7).

    My oncologist only recommended 4 DD A/C and no Taxol due to negative nodes (1.9 cm). Seems like even though many of you were node negative, you're still doing the Taxol. I will also do Herceptin and Tamoxifen and radiation.

    did anyone else only do 4 DD A/C?

    Susan
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  • Ditasea
    Ditasea Member Posts: 27
    edited October 2009

    Hi, I´m a late comer. Node negative, 1,8mm tumuor, tubular-lobular, ER 90% and PR 99%, HER 2 +. 41 years old, pre-menopausal. Concerned about HER 2 (althoug glad we have Herceptin and Tykerb), but happy about hormone positive because it does give us something to fight with - although hormonal block is not nice to endure.

    Still, y onc is very positive about the whole thing and actually talks of complete curation...

    Will do 6 TC + Herceptin for a year, plus maybe Tykerb (am on the randomnized clinical trial BETH), plus hormonal block for at least 5 years, maybe for life.. 

    By the way, for those of you on Tamoxifen, ask to have your metaboliser status checked first. There is a line her for Tamoxifen and HER2 which you might want to follow... 

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  • FrannyinTexas
    FrannyinTexas Member Posts: 15
    edited October 2009

    Ditesea,

    Your diagnosis is the closest to mine to anyone else I have seen on these posts.  They are calling mine DSIC rather than IDC, but I have several microinvasions, one of which is actually 1.5mm, which is technically outside of the definition of a microinvasion.  So, some would call it IDC.  Anyway, I just had my first meeting with my onc, and we are going to meet again in another few weeks after she runs a hormone panel and runs the FISH test on the microinvasions.  Apparently, due to the small invasive component (the actual DCIS was not small, but the microinvasions were), but the Her2+ there is a great debate among the experts as to whether or not I should do chemo and Herceptin.  I also am going for a heart ultrasound to see how strong the old ticker is so we will have that information before we make a decision.  Was there ever any question about whether you should do chemo or not?

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  • kimbly
    kimbly Member Posts: 398
    edited October 2009

    My diagnosis was 90% ER positive, 70% PR positive and also Her+.  I had 6 tx of taxotere and Carboplatin.  I am so glad for herceptin!!!!

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  • LouLou40
    LouLou40 Member Posts: 180
    edited November 2009

    I was dx Feb 09 age 40, triple positve, IDC 2 x 2cm 2/10 nodes. Lumpectomy

    AC x 4, Taxol x 12, Herceptin 3 weekly. Rads 6 weeks

    Menopausal post Chemo just started Arimadex, will have ooph if blood hormone levels rise.

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  • swimangel72
    swimangel72 Member Posts: 1,989
    edited November 2009

    My dx was very similar to yours Kimberly - but I chose to have a mastectomy and was only informed that I was Her2++++ after being told I would only need Arimidex (I'm post-menopausal) - my Oncotype DX was 22 - which my onc said was "low".  So it came as a shock when my onc changed his mind after they located my FISH report which showed the tumor was Her2++++  - when he told me I needed chemo I felt the rug pull out from under me!  Still he didn't follow normal protocols - he put me on Navelbine for 4 months, every two weeks, with Herceptin - and I continued the Herceptin every two weeks for a year. I've had other oncs tell me this tx was fine (that it wouldn't cause heart problems). Three different oncs told me there was a study done in Finland which said Herceptin with ANY chemo (in very early stage BC) was effective. I just wonder why more oncs don't choose Navelbine with Herceptin like mine did? Often I feel like the ONLY person on these boards who had this treatment..........perhaps my onc felt confident that I only needed the Herceptin because I did the mastectomy? Well time will tell........and I pray always that none of us ever get a recurrence!

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  • Warrior517
    Warrior517 Member Posts: 355
    edited November 2009

    Count me in on our "Special Club"...I will never forget what my Oncologist said to me...If it wasn't for Herceptin, your prognosis would of been grim...even ONE dose can make a diff!! We have answers...but make sure girls you see the post on Tamoxifen for Her2 girls posted by orange1...talks about metabolizing tamoxifen correctly.

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