who are her2 positive?

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vivo
vivo Member Posts: 532

I was told by the docs I am her2 positive.This is why I took Herceprin for about 6 5 months till my recurance. However a doc told me today that if the fish turns out her2++ this means you are her2-, meaning that the 2 or less plus is equal to negative. If so why all docs said I was her2 positive? My new treatment plan is going to have herceptin but the new doc told me it is not going to work!

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  • orange1
    orange1 Member Posts: 930
    edited March 2010

    Hi vivo -

    There are 2 commonly used methods for testing Her2 status: IHC and the FISH test.  IHC is relatively inexpensive to do, but is hard to interpret and may be subject to error.  The FISH test is more reliable, but more expensivie.

    Typically, tumors are tested by IHC and results fall into these catagories

    0 = negative

    1 = usually negative

    2 = uncertain

    3 = positive

    Her2 (2+) is sent out for FISH testing to confirm results (a few institutions also send out 1+ results too.

    About 75% of the time, tumors testing IHC 2+ come back as negative on FISH testing and are then considered negative.  About 25% of the time they come back as positive.  This was the case for me - I was IHC 2+ and came back FISH positive, so was eligable for Herceptin. 

    Very important for you:  In the early days of Her2 clinical trials, they did not have reliable Her2 testing.  After the trial was over, they went back and looked at results after retesting tumors.  It turns out, that tumors that had tested positive for Her2 BY ANY METHOD, FISH or IHC regardless of degree of positivitey (even 1+ and 2+ tumors that did not subsequently test positive by FISH), had a significant benefit from Herceptin.  So no way would I go off the Herceptin.  if you PM me with your private email address, I will scan the article abstract for you and email it (I can't post scanned articles directly here).

    Based on my understanding, you are likely to benefit from Herceptin. 

  • chainsawz
    chainsawz Member Posts: 3,473
    edited March 2010

    Great info orange!!  I really appreciate you writing all that out, because this is been very confusing for me. 

    Vivo - maybe they will consider tykerb for you?  I take it along with herceptin and so far it is holding the line on my mets. 

  • orange1
    orange1 Member Posts: 930
    edited March 2010

    I mis-spoke in my previous post.  This data comes from a Herceptin study that was testing Herceptin in the  adjuvant setting, not the metastatic.  But I see no reason why it wouldn't apply to the later stage as well, since the test methods are the same in both settings.  Since I can't sleep anyway.  I'll type it in:

    From Journal of Clinical Oncology, 2007 ASCO Annual Meeting Proceedings (Post Meeting Edition).  Vol 25, No 18S (June 20 Supplement), 2007: 511

    Abstract

    Benefit from adjuvant trastuzumab may not be confined to patients with IHC 3+ and/or FISH-positive tumors:  Central testing results from NSABP B-31

    S. Pal, C. Kim...others

    511

    Background: Trastuzumab is a humanized monoclonal antibody targeted to HER2 protein and currently indicated for Her2 positive breast cancer defined by overexpression of Her2 protein (3+ IHC staining by HercepTest) or Her2 gene amplification (Her2/CEP17 ratio over 2 by PathVysion FISH assay).  These criteria were determined for advanced disease but have not been formally tested in the adjuvant setting.  We examined these tests' ability to predict benefit from adjuvant trastuzumab in NSABP B-31.  METHODS:  All available tumor tissue blocks from the B-31 trial were sujected to HercepTest and PathVysion assay as defined in the B-31 protocol.  Formal statistical test of interaction between HER2 levels measured by these two tests and benefit from trastuzumab was performed.  RESULTS: 207 or 1795 cases (11.5%) showed gene amplificiation as as determined by PathVysion, and 255 of 1662 (15.3%) showed overepression as deterined by HercepTest.  161 of 1662 (9.7%) had neither gene amplificiation nor overexpression  There was a consistent benefit from trastuzumab in every subset defined by IHC or FISH.  No statistical interaction was found between DFS benefit from trastuzumab and level of protein (p = 0.26) or Her 2 gene copy number (p=  0.60).  Benefit was observed in patients with tumors that were negative for FISH and had less than 3+ staining intensity on IHC by HERcepTest (RR= 0.36, p = 0.32).  CONCLUSION:  Current definition of HER2 overexpression/gene amplificiation based on data from adjvanced disease may need to modified for the adjuvant setting.

    In all categories of Her2+, regardless of degree or how measured, relative risk with Herceptin was less than half of what it was without.  And all results were highly statistically significant, meaning results were likely not due to random chance. 

  • orange1
    orange1 Member Posts: 930
    edited March 2010

    I was hoping to find an easier way to do post this, but haven't been able too.  Here is the risk reduction with Herceptin treatment for the various groups:

    FISH+ :  Relative risk was 0.47 (that is reduced risk to 47% of what it was without herceptin)

    FISH- : Relative risk was 0.40

    IHC 3+ : Relative risk was 0.45

    IHC - (0 to 2+) : Relative risk was 0.28

    FISH- IHC- (0 TO 2+) : Relative risk was 0.36.

    This does not mean that all women should be getting Herceptin regardless of Her2 status.  All the women in this trial tested positive for Her2 at least once, by some method (often a method called "the clinical trial method") that is different than the methods in use now.  

    So vivo, back to you.  You must have tested positive, even if 2+ by IHC, at some point.  This data suggests that you should have a very good chance at benefitting from Herceptin.  

  • nicko44
    nicko44 Member Posts: 5
    edited March 2010
    hi my name is paul and I live in new zealand, my wife is called wilma and I would like to contact orange 1 as I am confused about what has happened to my wifes treatment. Our e-mail is nixon.family@slingshot,co,nz I am not sure how to send an e-mail threw this board.
  • vivo
    vivo Member Posts: 532
    edited March 2010

    So orange you suggest I could take out the tumour and check it. However it is on the neck area and I am afraid of the wound. When I had a surgery at the same place (one year ago) it had trained back chemo.

  • orange1
    orange1 Member Posts: 930
    edited March 2010

    Hi vivo: I thought that at some point you were considered Her2 postive.  That means at some point a test result must have come back at least slightly positive (IHC 2+).  Based on this slight degree of positivity, If it were me, I would continue with Herceptin, and try any other Her2+ drugs available to you such as lapatinib or TDM-1 trial if you can get in.

    I do not think you should have the tumor checked. 

    I was trying to say that based on the article I sited above, since your tumor tested somewhat positive for her2+, with any test method, and then later tests negative with a different test method, that Herceptin still decreased risk the study sited above so may be of some benefit to you.

    Sorry for the confusion

  • orange1
    orange1 Member Posts: 930
    edited March 2010

    Hi nicko44/Paul:

    I tried to respond to your email address, but my computer would not accept it.

    Just so you know - I am not a doctor, I am just a pharmacist who reads a lot.  I am not qualified to offer medical advice, but sometimes I do anyway.

    I read through your post history so I think I understand what's going on...your wife's tumor tested IHC 3+, then tested negative by FISH.  So the questions are 1.  Is she Her2+? 2. Should she continue Herceptin?  Is this correct?

    My thoughts:

    -IHC 3+ is a positive test result.  Therefore she is Her2+.

    -Based on the study I posted (that was conducted on early stage women), many women that are considered Her2- by current test methods, but have tested Her2+ positive, even slightly psotive, at any time by any method, as a group, seem to get a lot of benefit from Herceptin.  I don't know that if it would be the same in metastatic patients, but I see no reason why not.

    -If it were me, I would stay on Herceptin unless there is a strong reason not too (such as serious heart issue).   If there is progression, I would also try other anti-her2 therapies such as lapatinib, if available.  If Herceptin is not holding your wife's cancer in check, I would still continue Herceptin and add other treatments.  I have read that women who continue Herceptin, even with progression, still do better overall than if Herceptin is stopped.

    Please let me know if I've misinterpreted your situation.

    Best of luck to you.

    Jackie

  • vivo
    vivo Member Posts: 532
    edited March 2010

    Orange I didn't know you're a pharmacist! That's good... Well thank you so much for the infos. They are very very interesting and helpfull. I am her2++ with fish test. Since I was tested for estrogen receptors and the first doc found that I am er+ but a second one said I should not be considered er+ because of the status of the normal cell that are also overexpressed for estrogens!?#@. I understood something like this. So that's the reason why Femara didn't work and I am not considered er+. The only drugs except from chemos are those for HER2 and this is the reason why I am willing to be her2 positive. Also my doc votes for my her2 positivity and she is a good researcher (I wish doctor too!) She is going to talk about her2 in a medical symbosium in China this month I think. She seems to know a lot on the issue. I wish we will have a good result with all of these..

    Thank you very much for the infos :)

  • kjbell
    kjbell Member Posts: 974
    edited March 2010

    Vivo-Is that a real tree? How unusual!

  • vivo
    vivo Member Posts: 532
    edited March 2010

    No it's not:) But it is very nice picture that reminds me the beauty of a woman's body!

  • brazos58
    brazos58 Member Posts: 261
    edited October 2010

    I was not tested  for Her2..... is there a criteria?

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

    Brazos I would ask why you were not tested. All breast cancers should be tested for HER2. If you insurance won't pay for it you or your doctors can contact the companies that do the test and they can help.

  • brazos58
    brazos58 Member Posts: 261
    edited October 2010

    I pulled out my Path report and there it was. If it were not for this PLACE.... I would not have even known that I needed to KNOW THAT...Tyvm Lago.

    ((All))

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