TRIPLE POSITIVE GROUP

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  • cgesq
    cgesq Member Posts: 319
    edited January 2013

    What is this about TCH not being as effective for highly +er/pr women?

    I'm 96% er+, 71% pr+, ki67 93% and her2 ratio of 4.6  and just finished my 6th and last TCH treatment.  Still have one more regular herceptin, and then I switch to every 3 weeks.

    I'm 50, and peri-menopausal, so I'm not sure what anti-estrogen protocol I'll be put on.  I still have my ovaries, but I'm willing to have them out if it will lessen my chance of a recurrance.

    Now that I'm finished the chemo portion, I will have to have have a discussion with my MO about how best to proceed.  

    Thoughts???

    Thanks,

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited January 2013

    cgesq - I don't think it is TCH specifically, but chemo generally.

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  • TonLee
    TonLee Member Posts: 2,626
    edited January 2013

    Amy,

    I had a uniMX  with alloderm and TE placement.  THEN I had rads on top of it.  My advice is make sure you are fully expanded BEFORE Rads.  Expanding radiated skin is tricky and in some cases it simply can't be done...it gets too thin.

    Here's the problem.  The breast that will be radiated is most likely going to get tighter and higher with radiation....but don't freak out.  Once your done with rads, and after several months, a good PS can go in and "even" them up.  Just make sure your fully expanded BEFORE rads.

    My radiated breast with the TE pulled really high up...but at exchange my PS made a pocket for it, I wore a band for 2 months to push it down into that pocket...and now my boobs match!

    I was leery because so many women on this board who were touted as "experts" told me rads was going to ruin my reconstruction blah blah blah.  But when I researched it, I found less than 35% of women TOTAL (that means for all reasons including rads) lose their reconstruction and have to start over.  I've had worse odds!

    So I followed the Omaz Skin Care During Radiation regimen, and NO perm DAMAGE!!  Not even discoloration.

    My PS said occasionally the alloderm won't "mesh" with your skin and that can cause a problem....but mine did just fine.

    You should def. ask if you can be fully expanded before rads.

    Good luck!

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  • Lsl327
    Lsl327 Member Posts: 22
    edited January 2013

    Arlene, I think I need an acronym translator! Lol! What is EF?



    Pbrain (cute), what is the big D?



    Sorry I am all new to this.

    Have a great day ladies!

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  • LindaKR
    LindaKR Member Posts: 1,577
    edited January 2013

    EF= Ejection Fraction (what they watch with Herceptin to see if you heart is doing ok)

    bid D=diarrhea

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited January 2013

    Here is a link to the abbreviations thread.  The two you asked are not on here, lol!  EF is ejection fraction - it is a measurement of effectiveness of heart pumping capability with each heart beat - it is measured with an echocardiogram or a MUGA scan.  This is watched carefully because of the cardiotoxicity of some chemo regimens and Herceptin.  It is recommended to have a baseline measurement prior to the start of chemo/Herceptin, then have periodic measurements done during chemo/Herceptin and after.  The Big D or C is diarrhea or constipation - aren't you glad you asked!

    http://community.breastcancer.org/forum/62/topic/735716?page=84#post_2986223

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  • cypher
    cypher Member Posts: 508
    edited January 2013

    Cgesq, I’m almost thinking there needs to be a new thread for highly er/pr+ women with aggressive-type cancers.  I am highly er/pr+ and not sure how to make sense of this stuff about chemo not being too effective on us.  One thing that worries me is that if my best line of defense is then tamox, I won’t be on the stuff until probably early February.  I found my lump and it was in LATE February, so that is almost a year out.  Also, doesn’t seem like there is any particular reason this should correlate, but my chemo SEs were relatively mild.  How have yours been?

    Lsl, ejection fraction, diarrhea.

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  • ArleneA
    ArleneA Member Posts: 1,309
    edited January 2013

    LsL:  Goodness, we forget how foreign all of this is! 

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  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited January 2013

    Don't we love learning a second language,or third, if you count medical terminology for the path report! LOL.

    I had Alloderm and it hurt for a bit, not horrendously, but enough I got worried. Felt almost like a broken rib. Not telling this to scare you. But I guess so you know that's one if the semi normal side effects. it went away, and I was taking meds for my BMX anyway. It just surprised me. I was one of those they had to change chemo dose on as I had a few problems, ie, hospital, LOL. Also Herceptin lowered my EF rate to 47, when 50 to 75 is considered normal. I started at 59% so they were watching it. I had to stop Herceptin after 6 months. So, us it any wonder I DON'T allow them to use EITHER ARM for BP? LOL my track record for normal is screwed up! LOL. However, my EF came back up to 66% , so even better then before I started Herceptin. I guess I am trying to say, things can go wonky, or what I call, on a scenic detour! But you get to the same place sooner or later. Much love to all.

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  • beckstar18
    beckstar18 Member Posts: 253
    edited January 2013

    Cypher and Cgesq, I'm in the same boat as you. High ER/PR+, high Ki67, grade 3, Her2+. I need to read that article to see what it says about TCH.  I just finished round 2 of 4.  My MO said I could get by with 4 since my nodes were clear.

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  • Kelloggs
    Kelloggs Member Posts: 965
    edited January 2013

    cgesq - I am highly ER/PR+, Her2+ and was diagnosed stage IV from the get go.  I had 6 TCH treatments and have been on Herceptin alone since.  TCH kicked my cancer's butt....complete resolution of all lung nodules after treatment.  Everyone responds differently but for me, it was a wonderful result!  I am now on Herceptin indefinitely and Tamoxifen.

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  • PatinMN
    PatinMN Member Posts: 920
    edited January 2013

    Moonflwr, did you consider restarting Herceptin after your EF came back up?  I started out with an EF of 55% - 60%, and apparently my echo after finishing chemo was at 55%, so I'm low normal.  I'm so concerned about not being able to get my year's worth of Herceptin.  I just finished chemo on 12/7, and I have my second Herceptin alone tomorrow.  Did you have any symptoms when your EF was at 47%?

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  • Rhonda2
    Rhonda2 Member Posts: 133
    edited January 2013

    Hey everyone,

    Good news! My pathology report came back clean!!! Hurray, no more surgery and no cancer in the nodes! As my surgeon said " go celebrate", so I'm off to do just that. Thanks everyone for your continued prayers, love and support.

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  • ArleneA
    ArleneA Member Posts: 1,309
    edited January 2013

    Congratulations Rhonda!  Celebrate is right.

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  • Amy4978
    Amy4978 Member Posts: 473
    edited January 2013

    Moonflower and tonlee... Thanks for the response. I see my Bs and an additional ps on the 8th I have a whole arsenal of questions for the both of them! I love others insite and beyond greatful for this site. I have not meet my OR yet but this is one of the questions I have for my BS. Even if others insite might make me a little nervous I think knowing is better..Knowledge is power!

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  • ang7894
    ang7894 Member Posts: 540
    edited January 2013

    Great news Rhonda!! Go celebrate Wink

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  • LeeA
    LeeA Member Posts: 1,660
    edited January 2013

    Congratulations, Rhonda!!

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  • Bren58
    Bren58 Member Posts: 1,048
    edited January 2013

    WooHoo Rhonda!!! Have fun celebrating!

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  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited January 2013

    Congrats Rhonda!



    Patin, I thought about it, but my MO does not recommend going back on Herceptin. I also have a pacemaker, perhaps that is why. However, Herceptin works best with Chemo, and I did manage to finish that. So I have to hope that will be enough. It is what it is. Much love

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  • Lsl327
    Lsl327 Member Posts: 22
    edited January 2013

    Yay Rhonda! Congrats!



    Ok so now I know. There is so much to learn...being new at this is hard enough and now I get to learn a new language too. I thought I always wanted to learn Italian, guess that will have to wait! Lol! Thanks again everyone.

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  • Kelloggs
    Kelloggs Member Posts: 965
    edited January 2013

    Congrats Rhonda - woot woot!!!!

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  • dechi
    dechi Member Posts: 173
    edited January 2013

    Happy New Year Everybody!  Hope everybody had a great New Year's Eve and that this will be our best year ever!  I had my last Herceptin on New Year's Eve.  Rather fitting if I do say so!  Feels totally awesome and kind of strange to be done with that part of treatment.  I'm so thankful I've made it through the last 15-16 months!

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  • Kelloggs
    Kelloggs Member Posts: 965
    edited January 2013

    Congrats on finishing Herceptin dechi!  Happy New Year indeed!

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  • ang7894
    ang7894 Member Posts: 540
    edited January 2013

     Congrats to Dechi for last herceptin!! Great news happy new year.

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  • Lsl327
    Lsl327 Member Posts: 22
    edited January 2013

    Yay Dechi! Happiest of new years!

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  • Omaz
    Omaz Member Posts: 5,497
    edited January 2013

    cgesq - I think herceptin is equally effective against strongly or weakly er+ tumors (please correct if that's not so) and the herceptin works better with chemo. Also, if you were having your periods before chemo and they stopped with chemo (as it went with me) that is a good side effect of chemo for er+!

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  • Bren58
    Bren58 Member Posts: 1,048
    edited January 2013

    dechi - What a great way to the end last year and start this new one!

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  • ArleneA
    ArleneA Member Posts: 1,309
    edited January 2013

    Congrats Dechi!  So exciting!

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  • TonLee
    TonLee Member Posts: 2,626
    edited January 2013

    Congrats Rhonda!

    We need a Rosetta Stone for BC!Surprised

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited January 2013

    Yay for Rhonda and dechi!!!

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