Is it actually better to be Her2 positive than not?

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  • tobyholic
    tobyholic Member Posts: 96
    edited September 2014

    i agree....not enough information for us. I go to my surgeon on monday for a check up and I'm going to ask him about it. When i was diagnosed, i didn't know what questions i needed to ask him, since i was in shock.

  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited September 2014

    For the person who can't handle Herceptin, encouraging, cause the first time around it was extremely toxic to my heart. My EF dropped about 23 points in 4 months. Now that I'm stage iv, not stage 1a, I have to have Herceptin to live. With prayer, I believe for sure, I am doing well on Herceptin/Perjeta along with hormone blockers (shots). In fact, before starting Herceptin again this time my EF (after 2 yrs) went up to 56 (normal). I just had another echo and my EF is back to 65. It is doing fantastic.

    I did have a lung biopsy, nodes too, all is HER2+ ... HORMONE POSITIVE, GRADE 3...ALL BREAST CANCER.

    The biggest concern about being HER2+ is that this type of cancer tends to go to the brain and with the bbb (blood brain barrier) it is almost impossible to treat. Because I didn't know for the last two years, my grade 1a was actually in the hiler lymph nodes that I probably was stage 3. The whole time I had a bomb in my chest. The HER2+ moves fast, and when it exploded shrapnal everywhere...liver, lungs, bone, spine, and now brain. I felt good, and thought with the mastectomy and 5 months of Herceptin I was ok until recent mammo on good breast and PET scan. HER2+ cancers I read even for stage 1 can be sneaky and dangerous.


     

  • Hillk3
    Hillk3 Member Posts: 2
    edited September 2014

    I have my heart checked every three months because I'm on Herceptin. This is probably what she will do also. 

  • JeninMichigan
    JeninMichigan Member Posts: 2,974
    edited September 2014

    I am Stage IV (liver, bone mets) right from the start.   I have been NED now since June of 2008.  My Path is very slightly ER+ (<5%) and strongly HER2.   Herceptin has been a miracle drug for me.  Although I have been getting infusions every three weeks since May of 2008, it continues to keep my cancer not active.  In the case of mets, being HER2 + is a definite plus especially since my heart tolerates the Herceptin and it seems to still be working for me.  

    Jennifer

  • ben50
    ben50 Member Posts: 46
    edited September 2014

    This new vaccine I read about made me think of this thread. It did well for every BC survivor taking it, but for those with Her2 +3, it made the recurrence rate 0%. Something to do with the interaction and supplementary power of Herceptin plus the vaccine. It's being studied by MD Anderson and just finished its phase II trial. Pretty exciting stuff! 

    http://www.thepharmaletter.com/article/novel-vaccine-cuts-recurrence-in-her2-positive-breast-cancer-patients

  • Mommato3
    Mommato3 Member Posts: 633
    edited September 2014
  • Kay_G
    Kay_G Member Posts: 3,345
    edited September 2014

    very exciting!  I am participating in that study.  Hope I am not getting the placibo.

  • Girlstrong
    Girlstrong Member Posts: 438
    edited September 2014

    kayG have you heard when they will be opening up phase 3 of the trial? 

  • clarrn
    clarrn Member Posts: 557
    edited September 2014

    Thanks for the link!   Very exciting! 

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