Triple postive??

Options
24

Comments

  • frostyiris
    frostyiris Member Posts: 8
    edited April 2008

    I'm also a triple positive.  Have just four more Herceptin treatments (mine have been weekly). 

    I did A/C and Taxol, 52 weeks of Herceptin and have been on Arimidex for 8 months of my five years.

    I opted not to do Radiation. 

    I'm not a young woman and I'm tired and I'm anxious to get on with the life that I have left.Smile

  • SusieSwan
    SusieSwan Member Posts: 111
    edited May 2008

    I'm triple positive as well...and highly positive on all three markers.  As one sister said, we're such over achievers!

    Did lumpectomy, re-excision, 4 DD A/C, 36 radiation tx, in the midst of Herception and also on Tamoxifen.

    Kicking the beast hard.

    Hugs,

    Susan

  • dunna
    dunna Member Posts: 3
    edited May 2008

    I'm triple positive too. Diagnosed in June 07. Started chemo in July and done in November. Surgery in December (double mast). Started radiation in January. My tumor was large but responded well to chemo and herceptin. I had 8 nodes removed and 1 still had evidence of cancer after chemo. I'll continue herceptin until September 08 and am currently on tamoxifin. I'm 37 with no family history.

  • sassyone
    sassyone Member Posts: 26
    edited May 2008

    I'm also a triple positive overachiever!

    NED and three years out last February.

    Doing great and plan to stay that way!

    And I have every reason to believe that Herceptin has made that possible.

  • laureg
    laureg Member Posts: 21
    edited June 2008

    I'm also triple positive, diagnosed 11/07, ALD; 1node +, 11 neg. My primary tumor is occult, meaning it could not be found by all the diagnostcs. Chemo: 4 AC followed by Taxotere (was switched from 3 weeks to lighter dose weekly) and Herceptin. Will need rads too. I feel weird not knowing what kind of cancer I have as I only had the encapsuled lymphnode (5cm) that showed the BC and triple pos. Anyone else have occult BC?

  • GrammyNancy
    GrammyNancy Member Posts: 666
    edited June 2008

    Count me in...another over achiever.

    Mast Feb '07 ILC, TAC, Herceptin weekly for a year (only 7 more), Arimidex for 5 years.

    Nancy

  • nobleanna007
    nobleanna007 Member Posts: 641
    edited June 2008

    I am also +++ found out in Nov.07 and am been through bilateral masactomy with reconstruction. I had to have 1 expander removed due to infection. I had 5/27 positive nodes which through me into stageIIIa I was finally able to start chemo in March which was 4 rounds of A/C and then 4 rounds of Abraxane do to steroid problem so they decided to go that route instead of 12 taxol. I got neropthy from the abrazane and major joint aches with the herceptin which will go on for a year. I was stopped at the 2nd abrazane and did not get the 3rd and this Thursday they will decide on the 4th. It scares me cause I really want to beat this but they also don't want to disable me at the age of 44. So I will just have to trust there decision. I am trying to figure out if I am ever going to be able to work in the future do to the neropthy and pain. I work in a restraunt and need to be on my feet. I have taken the last 2 weeks off and will talk to onc. this week about it. Hopefully they can give me some clue!!!! If there is a se to have I have gotten it!!! Nothing seems to come easy and sometimes its hard to stay positive but I know I must. I need to listen to my heart and body, but I am a very active person and this is trhoughing me for a loop. And I think when you have constant pain it just does something to your mind. When I am around people I put on this act like its no big deal I hate people feeling sorry for me. So instead what have I done but vent to all of you!! I still have rads to go through and I am exhausted to think of it. I know their is not alot of out there and that scared me too having young kids and all but reading these posts have definatley made me feel better. Thank-you!!!!!!!! I hope we can keep talking cause I know I sure need it!!!

                                                   Bridget 

  • victorygirl
    victorygirl Member Posts: 2
    edited July 2008

    Hello, I am also triple pos. I was originally dx in 2000 with a very small tumor and 3 pos nodes.

    was original on the Herceptin study did it for a year along with chemo and rads. so in 2005 it came back in my Bone and lungs, went back on herceptin and arimadex and did fine till now, herceptin has failed and I have a neck  node that is refusing to shrink, so now Im about to start on Tykerb with Xeloda.... does anyone out there have any experience with Tykerb?

    Jen

    ps...we need our own chat room! 

  • spencerlarz
    spencerlarz Member Posts: 7
    edited July 2008

    hey there kimbly, i am also triple pos.Im so glad to finally discover some other people the same.Was begining to thionk i was the only one!! iwas dx when i was 26, just turned.i had a/c taxol and herceptin (thank god) , rads ,and am now taking tamoxifen daily, prob for 5 years. i absolutely hate being triple pos! but very lucky to have the herceptin, which was for one year.im finished hercep now.and im doing really well, healthy !

    love spenc.xxSmile

    oh also,i was dx in 2006 (i think) im now 29. with no family history, which i hear is common with her2+.

  • Summers
    Summers Member Posts: 5
    edited July 2008

    Hi

    Last October at the age of 36 I was given the new of being triple positive.  I had surgery removed tumor, 18 lymp nodes and a nerve from under my arm, got a port put in under my collar bone.  2 weeks later I started dense dose chemo (every two weeks) 4 treatments (that was rough!!), then started taxol and herceptin (taxol every 3 weeks and herceptin every week) for 3 months, then 7 weeks of radiation M-F, and now I only get herceptin every 3 weeks and will until mid January 2009 totaling 52 weeks.  Then I'm be finished!!

  • oldcat46
    oldcat46 Member Posts: 53
    edited July 2008

    Hi to all...

    It's so good to read all the comments from such heroines -- I'm proud to be a "triple overachiever" too, AKA triple positive (always wanted to become an overachiever -- didn't think it would be THIS WAY). 

    Diagnosed last Aug., DD AC X 4, then Taxol X 4 along with Herceptin each wk, then rads X 33 and now Herceptin until Dec.  Also, taking Arimidex for 5 yrs.  I didn't realize we were in such a minority -- I knew about HER-2+ happening in ~ 25-30% of breast cancers, but I didn't know ER/PR+ happened in only 10% of Her-2+ cancers.  

    I have a port and it hasn't bothered me at all -- it's so easy to get the Herceptin through it.  I don't know what the best tx is for any of this because I keep reading different things and it all changes faster than I can absorb it.  Truly, I just hand it to God every day and, while it hasn't been easy (understatement), I feel safe and cared for.  So far all my MRI's, CT's, bone scans, etc., etc. show NED.  Don't know what's coming -- don't want to know. 

    Kimbly, thanks for starting this thread.  I've learned a lot from reading everyone's comments.  You're definitely not alone as being triple positive.    And Jen, if you haven't already, why not start a new topic about Tykerb and Zeloda?  

    Hugs to all !!!    Wink

  • talbrig13
    talbrig13 Member Posts: 488
    edited July 2008

    Count me in too...finished my Herceptin Jan 31 08.   Taking Femara now.   I did 10 treastments of Taxotere, Carboplatin and Herceptin every 2 weeks.   That is now a full year behind me.   It seems like there are not as many of us around here.

    Love

  • lisettemac
    lisettemac Member Posts: 213
    edited July 2008

    Add me to the overachiever list!!

    I'm also triple positive -- didn't even know it until today when I was reviewing my OB/GYN records to send to my new doc.

    I argued with the onc about chemo.  I was 1.1 cm and node negative, so didn't want to do it.  But, I was poorly differentiated and my Oncotype came back higher than I wanted, so I gave in the towel.  I did ACT, 1 yr Herceptin and I'm on my 2nd yr of Tamoxifen.  Also did rads.  I will probably switch to an aromatase inhibitor since I had an ooph in April.

  • sue_m
    sue_m Member Posts: 24
    edited July 2008

    Hi all, I just saw this thread. Might as well stand up & be counted, as they say. I didn’t know that either, about ER/PR+ being in only 10% of Her-2+ cancers. Scary on hearing the triple pos verdict at first, but the consolation is the options for treatments. I had modified radical mastectomy, subsequent axillary surgery, dense dose 4 cycles each AC/Taxol, 33 rads, arimidex. No Herceptin yet (waiting for whatever is going to happen next, I guess). I have done very well so far. Cheers,

  • azsunn
    azsunn Member Posts: 201
    edited July 2008

    Add me to the list.

    I had a bilateral mastectomy in Dec 07, 6 carboplatin/taxol concurrent with 52 Herceptin.  I have finished the chemo and am now in my second month of Tamoxifen.

  • BethNY
    BethNY Member Posts: 2,710
    edited July 2008

    Just a question for all you trip positive gals... it really has no bearing other than my inquiring mind wanting to know...

    on your path report did you guys get the % of ER/PR positive you were? (sometimes it just says positive, sometimes it gives a number 1-3, or in other times it lists a percent- like 75% etc....

    Just wondering....

    oh- And I'm a trip pos girl too.  When I was dx back in 2004, Herceptin was only being given to stage 4, and in trials, and it was a scary time for a lot of us... however, in early 05 when I finished chemo, the FDA had haulted the trial due to overwhelming results, and I hopped right on board of the year long herceptin train.  Next month will be four years and loving NED...

  • Margerie
    Margerie Member Posts: 526
    edited July 2008

    Beth, I like inquiring minds myself.......

    They told me I was er+ 70% and pr + 30%.  I don't know where the cut off is for + is or what is considered strongly + .  I am tending to not look and worry anymore.

     I do recall them telling me I was strongly triple +.  My Her2 was 3++++.

    Congrats on your 4 year affair with NED.  I am almost at 3 years!! Cool 

  • coonie
    coonie Member Posts: 7,618
    edited July 2008

    I guess I'll join this club too. I'm also triple+. Thank God for all the treatments that are available. Finished chemo in March, and will finish Herceptin in January 2009. Arimidex for 5 years. Onward and Upward we go!!!

  • oldcat46
    oldcat46 Member Posts: 53
    edited July 2008

    Beth...   I dug out my path report and it reads:

                              ER:       80%       Favorable

                              PR:       60%       Favorable

                              Ki67      30%       Unfavorable (proliferation marker)

    My Her-2 just reads positive, not HOW positive.  I guess that's a good question for my onc this week. 

  • coonie
    coonie Member Posts: 7,618
    edited July 2008

    Here's my path report:

    ER:  57%  Favorable

    PR:  93%  Favorable

    Ki67  59%  Unfavorable

                                                  Reference Ranges

    Her2Neu by FISH    4.0        (Amplification Present)

    Does anyone know what BSR Grade means: 3+2+1

  • TriciaK
    TriciaK Member Posts: 362
    edited July 2008

    Another highly triple positive here, three years out and still NED!

    I believe herceptin has made such a difference to us all:)

    Triciak

  • coonie
    coonie Member Posts: 7,618
    edited July 2008

    That's encouraging! Thanks !!!

  • bill1951
    bill1951 Member Posts: 24
    edited July 2008

    Hi Kimbly, another tripple positive here. Being HER2/neu + is good 'cause now they have Herceptin for that.

    Taking TCH every 3 wk and H every week.

    Best of luck to you

  • Estepp
    Estepp Member Posts: 6,416
    edited July 2008

    Triple +++ here too...but er-/pr-.... just started DD A/C x4 then Taxol and herceptin.. then surgery ( bi-mast) and HOPeFULLY I can have immediate Reconstruction. My BS said I would have skin sparing with the implants I wanted . then rads.. but EVERYONE on here tells me that is wrong. I cannot have implants then rads... Funny.. that is part if this whole thing that keeps me in tears. I have yet to talk to a PS.. that will come very soon as I know my Bi-lat will be early Dec.

    Blessing to all of you ladies and Bill!

    Laura

  • Pugmama
    Pugmama Member Posts: 4
    edited July 2008

    I am also triple positive..dx'd in 6/06 at 41..stage 2, multi-focal 3 tumors, 3/21 lymph nodes, vascular invasion, grade 3....coming up on what I consider to be my anniversay date (the surgery date, 8/9) had the mastectomy, did the chemo, radiation and Herceptin..had the oopherectomy...almost 2 yrs..feeling well..celebrating life...

  • Estepp
    Estepp Member Posts: 6,416
    edited July 2008

    Hi everyone.. I will be going in for my second Chemo tomorrow. I hope I find you all well.

    I have been reading online about our cancer HER2+++... HAve any of you read a lot about us?

    I am very discouraged about this tonight. Can anyone add anything possitive?

    love and peace,

    Laura

  • oldcat46
    oldcat46 Member Posts: 53
    edited July 2008
    Laura, to be honest, I handled the dx of bc ok but I had to wait awhile for the FISH test to come back and I got my hopes up on that.  I figured I'd just have to be in the 70-75% of cancers that were Her2 neg.  Not so, and that bothered me more than the other parts of my dx.  I kept reading words like "aggressive" everywhere and it unnerved me a bit. 
      
    Then I looked up just about everything I could find on the Internet about Her2 and Herceptin and Tykerg and I started to feel more encouraged.  I also read a book called Her2+, the Making of Herceptin.  It was a long and pretty technical book (to me anyway), but I got the idea that it's a miracle this drug made it.  Lots of politics and such as with any new drug.  This one was in the making a long, long time.   It cuts our chances of recurrence about 52% and, along with chemo (and maybe radiation), the chance of recurrence is going to be lower.   I don't know much about Tykerg except that it's been in clinical trials for quite awhile and is available to those who need it and have tried other things. 
      
    I feel very blessed that we have options and such good ones like Herceptin.  Let's all be survivors together !!!   
      
    Love and hugs to all you ladies... and Bill.
  • Estepp
    Estepp Member Posts: 6,416
    edited July 2008

    Thank you Mary. I am usually the one in my world who pats on the backs and gives the hugs and say the prayers for others... it is hard for me to let go of my fears and sadness's about myself. I have never needed to before.( only to dh of 22 yrs )  This site helps me be freer that way. TY!

    Dh did my head shave tonight after my second Chemo... I donated 10-12 inches last week and he buzzed off another 2 inched tonight.. We laughed our @#@es off.... Most have trouble with this.. I do not. Hair is a decoration... just like make-up and lipstick.etc... so we all just need to redecorate! Thats all... get cool wigs... cool hats... and have fun with the new you for 6-9 months... how liberating. It is like the little bikini you ALWAYS wanted to wear... but just couldn't do it.... now.... we can decorate our heads with "coats of many colors" that are inside us~

    We Rock! God Loves us!

    Take care of all of you!

    Gods Love

    Laura

  • BethNY
    BethNY Member Posts: 2,710
    edited July 2008

    Laura it is possible to have implants with radiation due to a lot of amazing breakthroughs in reconstructive surgery.

    you can read here for more info www.breastreconstruction.org

    Also, don't even waste a breath thinking about being her2+ before herceptin- everything you read was probably published long before herceptin was given to everyone.  And back in the day, being her2 positive definitely wasn't a good thing- but now with the miracle drug herceptin, the 5 year cancer free survival rates are totally different than what they used to be.

    Is the 3+2+1 BR score... could be the Bloom Richardson scale which goes out of 9.  Maybe your score was 6/9... although on my path it was just listed as 8/9   not 3+2+.... I wouldn't fret over it too much.

    Interesting to hear your ER/PR results... they say with even 5% positive Estrogen you would benefit from tamoxifen--. My path report was so broad- it said ER + >11- <39.  well, which is it- 12 or 38??? LOL- b/c of this Tamox only gave me a 3% benefit, and for me it wasn't enough to outweigh the risks.

    Had I not taken herceptin, I never would've thought twice about opting out of anything.

  • Estepp
    Estepp Member Posts: 6,416
    edited July 2008

    Thanks Beth.. as you many have read in other posts of mine... the lack of rec. makes me the saddest.  I am only a big B cup.. but even at 40 they look perky and I love them. I am to thin for anything other than implants, and many people I know, have them. Even in reconstructed breast and with or without nipples they look just great.

    So yes..l my heart does ache about that part. I will be meeting PS very soon..

    Thank you for your note to me.

    Gods Love,

    Laura

Categories