HER2/neu

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nanabolini
nanabolini Member Posts: 61

What is her/2neu?  Would someone please explain?  It was on my pathology report and I asked the doc about it who said it was inconclusive at this time. we would know at time of surgery. 

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  • REKoz
    REKoz Member Posts: 590
    edited May 2009

    HER2 is a gene we all have. In bc, they check to see if it "overexpresses itself." If it does, it causes the cancer to grow faster and multiply. Used to be that us HER2 gals has a poorer prognosis due to this characteristic. Now with Herceptin, our odds are almost as good as one who does not have that overexpression.

    What that would mean for you if you are found to be HER2 pos after surgery is a chemo protocol with the drug Herceptin. Some do chemo x 4, some x 6. After chemo, you will continue on Herceptin once every 3 weeks for a year.

    I was more upset about having this pos result then I was having a bi lateral mx. Without it, I most likely would have been spared chemo. HOWEVER, it's a no brainer that we need Herceptin and in most cases, it is started with chemo. I have my LAST chemo tomorrow and am looking forward to just Herceptin which causes little side effects compared to chemo.

    Hopefully, you will turn out to be negative. If not, know this, Herceptin saves lives!

    Best of luck to you and God Bless,

    Ellen

  • lmt041409
    lmt041409 Member Posts: 45
    edited May 2009

    Does Chemo always come with Herceptin? Or can you just take Herceptin?  I just found out Friday I am triple positive.

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

    There is a ton of information here at BC.org about Her2+ cancers. Check out this link and the links provided on the left side of this page:

    http://www.breastcancer.org/treatment/targeted_therapies/herceptin/how_works.jsp

    You can also find out more about Her2+ breast cancer at www.her2support.org

    To give a quick answer to your question - Herceptin is usually given WITH chemo - to my knowledge there are no completed studies proving it's effectiveness alone. Let us know if you have any other questions - good luck with all your treatment decisions!

  • kim40
    kim40 Member Posts: 904
    edited May 2009

    The chemo that I am taking is FEC x 3 and Taxotere x 3.  I am starting the Taxotere on Wednesday.  I asked my onc about the Herceptin and he told me that I will not be starting it until chemo is over.......  Confusing!!!

  • NanaA
    NanaA Member Posts: 293
    edited May 2009

    lmt041409 - I am a triple positive like you.  Herceptin gives us the best chance with this cancer and protocols do not usually call for herceptin without chemo to start.  I am doing #7 today of taxol weekly x 12 with herceptin every 3rd week.  Today will be herceptin #3. Had I not been her2+ they would not have done chemo just rads and femara. My complaints with the taxol has been numbness and tingling in hands and feet, but it has not progressed to the place where we are stopping or chaging to something else although he has talked about taxotere being a sister drug we could do instead.  Since it was the herceptin I really needed not the chemo, I am trying to get far enough along with the taxol that he would let me quit if the SE's in feet got too bad and just continue on with the herceptin every 3 weeks.  I saw another onc for a second opinion and she thought my plan was well thought out and agreed that it was not a bad plan and thought my onc would be more willing the closer I got to finishing.  She was going to e-mail him and send me a copy, so I knew what he got from her.  I see him again on the 19th when I will be 3/4 done. That may be the day we stop or the week after would be #10 which would be my last herceptin with chemo.  I think he might let me stop on one of those dates if we need to for my hands and feet.  The 2nd opinion onc said the decision of when the SE's are too much is mine.  I need to ask myself if it remains like this forever can I live with it.  The answer so far is still yes. I am taking each week as it comes and seeing how it goes.  Otherwise taxol has been fairly easy.I have continued to work 20 hours a week.  The worst day is day 5 and that is mostly bacause all the steroids you take have worn off and you crash and are extremely tired. I have not lost my hair.  It has thinned a little.  They told me from the beginning that I could lose it, keep it or it would thin.  With taxol no way of knowing.  Chemo is worth doing to get the herceptin.  The onc told me there was no protocol allowing herceptin without chemo to start and insurance is very much into acceptable protocols to start.  Herceptin is not cheap,so you need to make sure what you decide on will be covered  by your insurance, because you will be doing herceptin every 3 weeks for a year.  You also need to think about having a port put in.  Having chemo is so much easier with a port than having someone try to put an IV every week especially when you are doing a whole year.  Being a triple positive is not all bad.  With herceptin and either tamoxifin or an AI depending on your age you are much better off than the  triple neg, who only has the choice of chemo.   Take someone with you to listen to the onc give you choices and reasons for them and take a list of questions you want answered.  You have to be comfortable with your choice.  My onc did not think the ach was appropriate because the a can cause heart problems and the herceptin can be hard on the heart, so he does not do them together.  TCH or the weekly taxol that I am on seemed to be the choices he was leaning towards.  You will have either an echo cardiogram or a muga scan to check your heart before you can start herceptin.  I have tried to remember anything that might help make your visit to the onc and your choices and herceptin not so scary. Best wishes.  Annette

  • lmt041409
    lmt041409 Member Posts: 45
    edited May 2009

    Wow, Nana! You are knowledgeble! The lumpectomy went well and the sentinel node biopsy was negative for cancer cells. I see the bs next Tuesday.

    Thanks for all of the information. I'll keep you posted.

    Where do you live in IL? I live in the Quad-Cities--northwestern edge of the state on the Mississippi.

    Linda (lmt041409)

  • NanaA
    NanaA Member Posts: 293
    edited May 2009

    lmt041409 - I live just outside of Champaign.  I am doing ok with #7 and hoping to make it thru #10 and then stopping so the neuropathy does not get worse.  If it is too bad before then, I will have to stop sooner.  I did get the letter and copy of what my second opinion onc had to say to my onc  and she did recommend my onc stop the chemo if hands and feet got too bad and just continued with the herceptin, which is what I want.  I do want to do as much chemo as I can, but not at the expense of permanent damage.  i see my onc a week from Tuesday which would be treatment #9.  We will see where we are at that point with hands and feet unless something happens sooner.  Keep me posted and I would answer any more questions if i can.  Annette

  • lmt041409
    lmt041409 Member Posts: 45
    edited May 2009

    Thanks so much, Annette! I hope you have had some improvement in hands and feet! If not, I hope your onc is willing to listen to what you want. I was great that you went for a second opinion. I have discovered that we are our most powerful advocates. I want to see every pathology report and understand everything that is coming my way!

    Given your experience, I know that I may have to have to chemo in order to take Herceptin and that's fine by me. I just want to know that the cancer is out of my breast, radiated to kill off any errant cells , chemo'd, Herceptin'd and Tamoxifen'd to death!!! Know what I mean! ;-) Have a great week!

  • lmt041409
    lmt041409 Member Posts: 45
    edited May 2009

    Thanks for the links. I found a great deal of information there but you all have such great firsthand knowledge.  It means a great deal to those of us who follow you up this "hill" before we go back on our merry way of living life without cancer!

  • suemed8749
    suemed8749 Member Posts: 1,151
    edited May 2009

    Linda - Last year I had Taxol/Carboplatin/Herceptin and just finished my year of Herceptin only. I'm from Rock Island (my niece is a chemo nurse there), and please feel free to PM me if you have any questions about treatment.

    Best wishes,

    Sue

  • lmt041409
    lmt041409 Member Posts: 45
    edited May 2009

    Sue--I see the med onc for the first time on Monday. Will be interesting to see what his treatment plan will be. Scared of chemo but if that is the best way Herceptin works OK. Saw the surgeon this past Tuesday. Path report was good although only 5mm clear margins. No venous/lymphatic vessels involved. Turned out to be PR negative instead of positive.

    All--Wonderful day in the Quad-Cities today, but the rain yesterday was relentless! Love the sunshine, either outside or on this website! It is good to have comrades in this fight!

    A team of about 24 are walking in Komen Race for the Cure in the Quad Cities for me on June 13. I am going to walk with them. Hope it isn't too emotional--I haven't cried a lot yet....

  • suemed8749
    suemed8749 Member Posts: 1,151
    edited May 2009

    Imt - Your diagnosis sounds like you have a very good prognosis. What side of the river is your doctor? My niece was here visiting this week and wants to know where you go! She and my sister-in-law will be in QC race - I've done it there a few times when I've been in town.

  • lmt041409
    lmt041409 Member Posts: 45
    edited May 2009

    Hi Sue,

    The Illinois side-went to Trinity 7th Street and everyone was wonderful! My med onc is on both sides of the river but they had an opening on the illinois side but I would have gone to the moon to see the med onc. Wanna get this thing moving along.

    I'll know tomorrow what will be happening...

  • suemed8749
    suemed8749 Member Posts: 1,151
    edited May 2009

    Linda - Hope your appointment went well today. Let us know.

    I know what you mean about wanting to get moving! I had a lumpectomy, re-excision, and then a mastectomy before being able to start chemo. I was going nuts by the end - my surgeon gave me the choice of trying a third lumpectomy or just having the mastectomy, and I almost shouted "TAKE IT OFF!"

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