Please help with my Herceptin decision...

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Sharon789
Sharon789 Member Posts: 56
edited June 2014 in HER2+ (Positive) Breast Cancer

Hi folks,

I have Stage I BC and was tested for Her2neu and it came back in the gray zone which was 2.0 for both FSH and the IHC test. I was also tested again during the Oncogene DX test and it has come back negative.  I don't know what to do because my oncologist got two other onc's opinions and one says I should get Herceptin and one says I shouldn't get it. My oncologist says the decision is up to me. It is still an option for me since there has been some benefit shown for patients with a FSH test of 2.0.

I will be getting chemo as per the Oncogene DX test recommendation but don't know what to do about Herceptin??  Can anyone share any experiences that might help in my decision?  I'm in Canada so maybe experiences in other countries might be different???

Thanks for your help,

Sharon

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Comments

  • Xena58
    Xena58 Member Posts: 5
    edited December 2010

    Hi, Sharon!  Unless you have heart problems or are at high risk of suffering loss of left ventricular function, I think it's a no-brainer.  I had Herceptin because it was necessary and it was a piece of cake.  I had no side effects and am convinced that it saved my life.  My philosophy is to hit it hard initially so you can move on with your life and not have doubts.  If it's available, get the Herceptin!

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  • Sharon789
    Sharon789 Member Posts: 56
    edited December 2010

    Thanks for your note Xena58!  I was thinking along those lines so it is nice to find out that it is not so unusual.

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  • swimangel72
    swimangel72 Member Posts: 1,989
    edited December 2010
    Sharon - you could get more information about the benefits and side-effects of Herceptin at www.her2support.org I didn't have any SEs from Herceptin - my onc checked my heart function and although it dropped a tiny bit, it was really fine. I even went to a cardiologist afterwards (just to be safe) and everything was fine. It was a drag though going every two weeks for a year for infusions but I got a lot of reading done. Good luck with your decision!
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  • REKoz
    REKoz Member Posts: 590
    edited December 2010

    Another Herceptin advocate here. My situation was the reverse of yours. Prior to getting back the HER2 results, it looked as though I would be escaping the biggest fear of my life- chemo. Small tumor, BMX and clear nodes. At the time, I didn't even know about HER2 or that it was being tested for. I need not explain how I felt when the surgeon told me I was highly positive and began talking about the efficacy of having the chemo port put in during my bmx surgery. Let's just say that I walked out of her office with an unsolicited script for valium.

    As you may have learned, the general protocol is that Herceptin is administered at first with some sort of chemo and then by itself for a total of one year. Since you are already a candidate for chemo, Herceptin would be added insurance that I wouldn't pass up.

    I wish you all the best..if I could get through it, anyone can!

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  • lago
    lago Member Posts: 17,186
    edited December 2010

    I've had 4 tx of Herceptin with my chemo. The only SE I associate with the Herceptin is on day 8 I get several manageable bloody nose episodes for about 5-7 days. No big deal.

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  • flash
    flash Member Posts: 1,685
    edited December 2010

    I also would support the decision for Herceptin.  I did have the heart ejection fraction decrease but wouldn't stop or think of not doing herceptin.  It's made too much of a difference for the her2+.

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  • negirly
    negirly Member Posts: 318
    edited December 2010

    Another Herceptin fan - big tumor and had herceptin prior to having surgery - my tumor got a lot smaller and my onc replied "its the herceptin"...

    Karyn

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  • blondie45
    blondie45 Member Posts: 580
    edited December 2010

    I am another one that says go for whatever herceptin you can get. If you are having  other chemo anyhow there is nothing to adding herceptin as far as additional side effects etc except for the VERY small percentage of heart problems. Even though I fell into that category after now being off herceptin for a while my ejection fraction is back to normal. I got 6 months of herceptin and I would take whatever you can get if it were me.

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  • Sharon789
    Sharon789 Member Posts: 56
    edited December 2010

    Hey Ladies,

    Thanks so much for your thoughts on this.  It really makes my decision so much easier!  You are a great help.

    Sharon

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