HER2/neu positive reccurence fear

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anireh
anireh Member Posts: 4
edited June 2014 in HER2+ (Positive) Breast Cancer

Hi

I am new to this site, I was diagnosed with stage 2, ER/PR negative, HER2/neu positive, grade 3 back in April 2010 (age 38), I had to have a total mastectomy since I cannot have radiation, I had too much radiation when I was 16 because of another type of cancer (hodgkins). I have completed 6 treatment of TCH chemo, every 3 weeks. I was supposed to continue the herceptin for a year, every 3 weeks but was asked to see a cardiologist first because my MUGA scan went from 51% prior to starting chemo to 42% after 6 treatments. In the meantime prior to seing the cardio, I had a hearth attack and needed an agiosplast, 2 of my arteries were blocked at 85% and I had to have 3 stents(this was due to my past radiation and not related to chemo).

SO for now my herceptin has stopped and it might stop for good, this is waht worries me because from what I know the recurrence rate is high if you have HER2 positive, has anyone had to stop herceptin completely after 6 treatment or have any info on the recurence rate.

thanks a lot

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  • Soccermom4force
    Soccermom4force Member Posts: 631
    edited October 2010

    anireh,

       There is a website that is specific to anyone Her2+, it is

    www.her2support.org

    The message boards there would probably be a wonderful resource for you!

    I am sorry that i cant help, but I know that the Her2 folks will have some helpful inofrmation for you,

    Warmly,Marcia

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  • Lady_Madonna
    Lady_Madonna Member Posts: 472
    edited October 2010

    Anireh, The fact that you completed the TCH chemo is great!  It would be ideal to be able to take some more Herceptin but if you can't you still have given the breast cancer a powerful hit.  The Herceptin works in sync with the T & C to make both the chemo and the Herceptin more powerful. 

    I'm sorry you've been through so much and I'll be hoping things go well for you.  We have so many great gals here for support.  Hopefully you'll hear from some other ladies with more information.

    Big (((hugs)))

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  • Jenna1961
    Jenna1961 Member Posts: 71
    edited October 2010

    anireh,

    it would probably help to be aware of controversies regarding the duration of Herceptin therapy. You can google Herceptin in Finland or New Zealand or "dr Love and Herceptin" etc.
    Here are some examples:

      "Dr Love said she wouldn’t be at all surprised if a 9-week course of the drug is eventually found to be as good as 12 months. "
          or:

    "Until further research whose results are not controlled by the drug company reveals whether 12-months is actually more effective than the nine-week course of Herceptin, the AWHC supports the subsidising of treatment with Herceptin for HER2 positive early breast cancer patients when it is administered for nine weeks concurrently with taxane. ..."

    Etc.

    All the best,

    Jenna

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  • Lee_Asbell
    Lee_Asbell Member Posts: 12
    edited October 2010

    anireh - You have really been through the wringer! Just wanted to offer some encouragement about the HER2-neu status. I am over twelve years out since diagnosis and when I had treatment Herceptin was still in clinical trials and only available to Stage 4 patients. Here I am, still disease-free all this time later and no Herceptin. Hang in there!

    Lee

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  • eileen1955
    eileen1955 Member Posts: 365
    edited October 2010

    I'm no expert, but it seems to me that having a bilateral mastectomy would lower your risk of recurrence even more/as much as herceptin.  when you wrote "Total" mastectomy I am not sure if you meant bilateral.            I also don't know if being her2 positive puts you at risk of recurrence in both breast or just the one affected by cancer already.

    did you have positive lymph nodes?

    The bottom line is that you just cannot have herceptin similar to my bottom line being that I am triple negative so none of those drugs would prevent a recurrence in me. so I had a PBM and I feel such great relief.           Best wishes to you. sorry to hear of your cardiac complications.    

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  • LJ13-2
    LJ13-2 Member Posts: 235
    edited October 2010

    Even though you aren't getting Herceptin infusions, the Herceptin you did receive will continue to work for several weeks ... perhaps even months after the last infusion. It stays in your system quite a long time.

    Hopefully, after a period of not receiving Herceptin, your heart will recover and you can receive more. This has happened to many women.

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  • meglove
    meglove Member Posts: 267
    edited October 2010

    I am Her2 + too. I read that gene is overexpressed in the tumor. Just wondering after taking herceptin, can the overexpressed gene will put into normal form, thus people originally Her2+ becomes Her2 -? Just curious. 

    Best luck to you. 

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  • anireh
    anireh Member Posts: 4
    edited October 2010

    HI

    thanks for the reply, no i did not have bilateral mastectomy, also no positive lymph nodes

    thanks

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  • anireh
    anireh Member Posts: 4
    edited October 2010

    thanks a lot everyone for your replies and encouragement

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  • simba
    simba Member Posts: 46
    edited October 2010

    Hi Anireh, 

     I have stage 4 metastatic BC. It has metastasized to my liver and lungs. After 8 months of being on Herceptin every 3 weeks, my heart ejection fraction dropped from 60% to 40%. I had to go off the herceptin. After about 2 months my ejection fraction came back up to over 60%. Then I had 9 treatments of T-DM1 on a clinical trial. T-DM1 has Herceptin in it. However, my ejection fraction has stayed up over 60% the whole time. Someone on the discussion boards recommended that I start taking Co-Q-10 when my EF went down. I did, and I feel it has made the difference. Co-Q-10 is a dietary supplement in pill form. Almost all drug stores carry it. You can take 200 to 400 mg per day.

    Remember to take a deep breath and tell yourself your in God's hands every day. Love, Simba

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  • anireh
    anireh Member Posts: 4
    edited November 2010

    thankyou

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