New here with HER2+ questions

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taiga
taiga Member Posts: 75 Member
I was dx. with stage 3, grade 3 clear cell ovarian in July 2010. I have been in a clinical trial, so this whole year I've been on Avastin maintenance every 3 weeks. My chemo was IV/IP taxol and cisplatin along with the Avastin. I was dx. with breast cancer in my right breast on November 16th. The initial path report said invasive with lobular features, grade 2. My tumor is about 2.5cm. The final path showed it was ER+, I have been placed on 1mg of Arimidex, and also HER2+. The HER2+ was confirmed by the FISH test and my score was 3.5, which I was told was pretty definitive - no gray area as to whether it was/wasn't.

My surgeon has discussed this with the oncologist and I meet with her on Tuesday. I get the impression they are leaning towards chemo plus Herception for 3-4 months. Is this the standard treatment for HER2+ or am I getting chemo now because I can't have surgery for at least 8 weeks due to being on the Avastin. The drug sheet on Herceptin is really scary! I've had an MRI that showed nothing in my left breast and my PET was clear other than the right breast cancer.

Also discussion as to whether to do the sentinel lymph node biospy prior to chemo. My MRI and PET indicated nothing in the lymph nodes and doing that would further delay chemo. He said he could do the sentinel biopsy at the time of my surgery (hopefully by then a lumpectomy).

I've always been told I had dense breast tissue. I'm 51 and my surgeon said he had never seen such dense tissue in someone my age. He said reading a mammogram on me would be very difficult. Yet, despite my OC, I got the "all clear" letter last month and in October 2010 after my mammograms. This thing didn't show up on a diagnostic mammogram, but did on ultrasound and of course, the MRI. Any answers/thoughts/questions for oncologist are appreciated. Thank you so much!

Comments

  • Dwwilburn
    Dwwilburn Member Posts: 19
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    Complicated
    Hi! Your story and diagnosis sounds very complicated. I was diagnosed in Oct 2011 with breast cancer. I had my cancer removed and the sentinel lymph node biopsy prior to chemo. However, in your situation, I would lean towards not doing it and just doing the chemo. Why? I would ask this. If the sentinel nodes showed any cancer, would the chemo treatment differ in anyway. If not, why go through the surgery.

    I am on Arimidex as well. If that is making your joints hurt, which it is mine, I hate running, but I find running two or three times a week seems to help with the joint pain.

    That is my two cents. I wish you the best.
  • Kgy
    Kgy Member Posts: 30
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    I had Her2 + survivor 2 years now
    Sorry to hear that you are going throu this. I was given Herceptin and that is what actually reduced my tumors. They did not reduce much until the herceptin then by the time I got to surgery and the reconstruction there was no more cancer! The herceptin is hard but it was worth it.

    Mine also was not seen on a mamo but had to confirm with an altrasound. No one ever said anything about my very dense breasts until I was diagnosed.

    Hope all goes well for you. I was 50 when diagnosed.

    Kim
  • mckevnic
    mckevnic Member Posts: 71
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    I was ER+, PR+ and HER2+
    re: herceptin. i got this weekly during the 6 rounds of chemo, then every 3 weeks for a year total. Never heard of it being given less than that. I would clarify with your onc.

    re: sentinal node-I had this done at the time of surgery. Was told it would show if the cancer spread to the nodes and if so, surgery would be different than what I had hoped (lumpectomy). This sentinal node procedure is painful, not gonna lie. But at least I was given almost immediate answer, and in my case there was no node involvement so we were able to go through with lumpectomy.

    re: arimidex. I was on this from Nov 2011 to this past Friday. I couldn't take the pain/stiffness anymore. Doc switched me to Aromasin. Supposedly same type of drug. If you suffer with side effects, speak up....they have other drugs out there.

    I had 2 tumors (1 was 2cm, other was 3cm)removed in Mar 2010- I was 42.

    I wish you all the best as you go through all these decisions/treatment etc. There are plenty of ladies here who will help you through!

    Chris
  • Bella Luna
    Bella Luna Member Posts: 1,578 Member
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    Her2 positive
    Sorry to hear you are having to battle another cancer. Just wanted to say that, yes, I tested positive for Her2. I had six rounds of chemo( taxotere, carboplatin, and Herceptin). I continued with Herceptin for a year. I was Stage 1, Grade 3. Underwent 2 lumpectomies,radiation followed chemo. I am currently taking Tamoxifen.

    Oh, yes, it's best to be followed by a cardiologist when taking Herceptin. I had echos and met with a cardiologist every quarterly for a year.

    Best of luck with your recovery.
  • BetsyJane
    BetsyJane Member Posts: 127
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    I am HER+
    I am Stage II HER+ (2 out of 10 lymph nodes tested positive). I had a lumpectomy, 8 rounds of chemo (AC followed by T), am currently getting 33 rounds of radiation (ends December 23) and I receive Herceptin treatments every three weeks for one year. I am also on Arimidex.

    On Herceptin you should be getting muga scans every 3 months as Herceptin can effect your heart function. In fact, my next muga is next Thursday. Hope all turns out okay.

    I never heard of only getting Herceptin for only 3 months but then again everybodys treatment is different. Sometimes they give Herceptin before surgery to shrink the tumor before operating.

    You should purchase the movie "Living Proof". It's all about Herceptin. You can purchase it on EBAY for $3.99 + shipping. I too was extremely afraid of getting Herceptin --- but now I feel it is a God send. It has saved countless lives.
  • debi.18
    debi.18 Member Posts: 850 Member
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    BetsyJane said:

    I am HER+
    I am Stage II HER+ (2 out of 10 lymph nodes tested positive). I had a lumpectomy, 8 rounds of chemo (AC followed by T), am currently getting 33 rounds of radiation (ends December 23) and I receive Herceptin treatments every three weeks for one year. I am also on Arimidex.

    On Herceptin you should be getting muga scans every 3 months as Herceptin can effect your heart function. In fact, my next muga is next Thursday. Hope all turns out okay.

    I never heard of only getting Herceptin for only 3 months but then again everybodys treatment is different. Sometimes they give Herceptin before surgery to shrink the tumor before operating.

    You should purchase the movie "Living Proof". It's all about Herceptin. You can purchase it on EBAY for $3.99 + shipping. I too was extremely afraid of getting Herceptin --- but now I feel it is a God send. It has saved countless lives.

    Me too
    I'm also stage 2, HER2+, ER+ & PR+. I had a lumpectomy and sentinel node removal in June. The sentinel node and one other node were positive, so had a 2nd surgery to remove 11 more nodes -all were negative. My pet scan did show activity in the node area.

    Finished 12 rounds of taxol and also currently doing rads. Finished # 10 today, 23 more to go.
    Like the others, I also am on Herceptin (52 treatments). I receive the herceptin weekly. I tried it every 3 weeks, but the 3 doses at one time was too much for me. I had a reaction to it that made my feet, ankles and legs swell. I think the chance of this is only about 20% - have no problems with the weekly treatment.

    Your ONC should monitor your heart to make sure there is no damage from the Herceptin.

    Let us know how you're doing.

    Hugs,Debi
  • Alexis F
    Alexis F Member Posts: 3,598
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    Dwwilburn said:

    Complicated
    Hi! Your story and diagnosis sounds very complicated. I was diagnosed in Oct 2011 with breast cancer. I had my cancer removed and the sentinel lymph node biopsy prior to chemo. However, in your situation, I would lean towards not doing it and just doing the chemo. Why? I would ask this. If the sentinel nodes showed any cancer, would the chemo treatment differ in anyway. If not, why go through the surgery.

    I am on Arimidex as well. If that is making your joints hurt, which it is mine, I hate running, but I find running two or three times a week seems to help with the joint pain.

    That is my two cents. I wish you the best.

    I always have a mammo,
    I always have a mammo, ultrasound and a MRI, as, sometimes bc might not show up on a mammo. I don't know what I would do if I were you. I would probably have the sentinel node biopsy just to make sure.

    I am ER and PR+ and HER2-.

    I know you will make the right and best decision for yourself.

    Good luck,

    Lex
  • cupcake7
    cupcake7 Member Posts: 17
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    positive strong her
    I had breast cancer and my chemo cocktail was Carboplatin, Taxotere and my best friend Herceptin. I took it a year after chemo over too. It saved my life. Beings we have so much Estrogen in our body the cancer feeds off it. The Herceptin blocks the mouth I call it of the cells so it cant get it. thus the cancer cell die. It is a miracle drug and the story behind it is awesome. A movie was made about it and can find the name of it if you want. They did a mamo and nothing, they did an ultra and nothing, but the needle biopsy found it
  • DebbyM
    DebbyM Member Posts: 3,289 Member
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    Her2 positive
    Sorry to hear you are having to battle another cancer. Just wanted to say that, yes, I tested positive for Her2. I had six rounds of chemo( taxotere, carboplatin, and Herceptin). I continued with Herceptin for a year. I was Stage 1, Grade 3. Underwent 2 lumpectomies,radiation followed chemo. I am currently taking Tamoxifen.

    Oh, yes, it's best to be followed by a cardiologist when taking Herceptin. I had echos and met with a cardiologist every quarterly for a year.

    Best of luck with your recovery.

    I just want to say that I
    I just want to say that I wish you all the best!