Newbie: ER-, PR-, Her2+, I am confused

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Keena208
Keena208 Member Posts: 17
Hi, Everyone.

I am 37 years old, with 2 kids (my son 4, daughter 1).

I was diagnosed with triple negative (IDC, Stage III, Grade 3) 3 weeks ago. My oncologist started the chemo right away (taxol x 12 weekly, AC x 4). So far I am feeling fine with the chemo.

My original pathology result was HER2 Positive ++. So my oncologist ordered the FISH test. I just got the results, and it says I am HER2 positive. I was excited to see the test result thinking that I will have more treatment options, but as I started to do my research, everything says HER2+ is super aggressive, and has poor prognosis, etc. etc. I am totally depressed again.

I just send my oncologist an email.  My mind is panicking........ Is there anything positive to be HER2+?

I have been studying as much as I could (even though so scary) about BC, but I have a lot of homework to understand about HER2+.

I would really appreciate your thoughts, any advice, and success stories.

Thank you!!!

Comments

  • lkc
    lkc Member Posts: 1,203
    edited May 2012

    Hi Keena Yes, I know it is all scary. But rest assured. Her 2 positive dx was a very poor prognosticator PRIOR to HerceptinTx.

    I  was one of the " early" Herceptin Ladies that rec'd herceptin when it was just approved for NON Stage IV BC.

    Prior to herceptin tx , the news was really dismal for Her 2 dx. But it has become a MAJOR game changer.

    Anyway, I had a super aggressive Her 2 pos tumor with 12 positive nodes(Stage IIIC) and will be celebrating 7 years NED in 2 weeks.

    You will be ok!

  • Nevo84
    Nevo84 Member Posts: 94
    edited May 2012

    Dear Kenna28

    First I'm sorry that you're going through this. But remember that there is a light at the end of this tunnel. 

    The information in different webs and all the statistics are prior to HERCEPTIN which everyone calls it MIRACLE DRUG. So don't google a lot. There are a lot of ladies in this forum who were HER2+ and they are doing really fine. So you can search in this forum for long time survivors.The positive point about being HER2+ is that the chance of recurrance drops nearly 0% after 3 years. And also I read somewhere that Herceptin cut the chance of recuurance to 85%.Keep being positive and good luck with your treatment.

    I started a thread "ER, PR_, HER2+ Roll Call". There are ladies posting there who are long time survivors. You can check it out.

  • ma111
    ma111 Member Posts: 1,376
    edited May 2012

    Herceptin is a biological medication for Her+. It binds with the protein on the outside of the cells and prevents them from dividing. Not much information is on the net about it. There are benefits to it in that there is treatments for it.

  • Keena208
    Keena208 Member Posts: 17
    edited May 2012

    Hi, Ladies!!!!

    Thank you all so so much.  You have no idea how much hope you have given me!!!!

    Late last night, my oncologist responded to my email saying he will be adding Herceptin to my next chemo!!

    Yaaaaayy!!!!!!

  • Sassa
    Sassa Member Posts: 1,588
    edited May 2012

    Keena,

    Herceptin is our miracle drug.  I know it is upsetting to read about the aggressiveness of ER/PR-, HER2+ BC, but the very aggressiveness (fast dividing cells) of this type of BC makes chemo extremely effective.  Add on the herceptin and your odds just greatly improved to be NED.

  • Keena208
    Keena208 Member Posts: 17
    edited May 2012

    Sassa,

    Now I can't wait for my next chemo session!

    Thank you!!

  • ma111
    ma111 Member Posts: 1,376
    edited May 2012

    The Herceptin has so few side effects also.

  • Dutchie
    Dutchie Member Posts: 112
    edited May 2012

    Ditto to everything above, no doubt Herceptin did amazing things for me. And I didn't have a single side effect. If I had any advice it would be just to make sure you get it long enough. But sounds like you're in good hands and you have such a great attitude!! Keep us posted!!

  • Keena208
    Keena208 Member Posts: 17
    edited May 2012

    Hi, Ladies.

    I just had the first Herceptin yesterday. There was a mixed up and they had a wrong dose of herceptin, but the doc had to send it back and get the correct one, etc etc....... I was there for 6 hours total.

    But I finished my first herceptin and I feel great!! Totally tolerable!

    My Oncologist congralurated me and gave me a big hug too!

  • jittersmom
    jittersmom Member Posts: 165
    edited May 2012

    Hello ladies...I was very nervous when i found out about HER2 sometimes you read too much. I have been on it every3 weeks since last December. I was getting it along with my chemo, now i get a 30 minute drip every 3 weeks, its so nice to not be sick like I was with the chemo. I am also in the middle of radiation. I am very thankful for herceptin,and reading the positive remarks on here really help when I am a little down

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