Confused-am I triple negative or not?

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bak94
bak94 Member Posts: 1,846
edited June 2014 in Stage III Breast Cancer

I had a long talk with my mo today after my pet/ct, which showed a 90% reduction in internal mammry nodes and couldn't see any activity in the breast after 6 treatments of ac. although this is not the best test for breast.

Next step was to do abraxane/carbo, but he is changing his mind on the carbo. He now want me to do abraxane/avastin plus zometa. He then went on to say that he may put me on hormonal therapy and herceptin! I thought I was triple neg! I guess I have 3%er positive, 0%pr and her2 +1. He said doctors are now starting to treat her2 +1 gals with herceptin! Have any of you heard this? I am in shock to think I will be on hormonal therapy plus herceptin. My first breast cancer 8 years age was triple neg, but now my doc is having the tumor retested with todays methods to see if that still hold up. I am so confused!

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  • LRM216
    LRM216 Member Posts: 2,115
    edited July 2011

    I am triple neg - 0% readings on estrogen and progesterone, but go on over to the triple neg thread.  We have a few with your same situation.  I'm sure you can get some info over there. 

    Linda

  • Gitane
    Gitane Member Posts: 1,885
    edited July 2011

    This is amazing.  I haven't heard about Herceptin for Her2+1, but I have heard that there is some controversy about it working for more women than they thought it would in some trials.  I know they give hormonal therapy if you have even 1% ER positive. It's great that you have had such a good response already to treatment.  Best of luck as you tackle the next phase. Please let us know more when you know more.  G.

  • kathleen1966
    kathleen1966 Member Posts: 793
    edited July 2011

    Wow, good news with your reduction in nodes and no activity in your breast.  As to your other question, I have not heard of this.  I am Er- and weakly progesterone + (Less than 10 of cells) and I am considered hormone negative.  I do not receive hormone therapy.  I also have not heard of Her2+ 1 getting Herceptin. I don't think Herceptin works if you are not Her2+.  I believe that all breast cancer tumors have some Her2 on the surface, the Her2+ women just have a lot more which makes us Her2+. I'm sure someone will chime in with better facts and figures than I am putting in here but I would recommend a second opinion. It seems that clinically you are a triple negative.

  • Gitane
    Gitane Member Posts: 1,885
    edited July 2011

    http://www.nsabp.pitt.edu/B-47.asp

    Just lost a long post I wrote about the history behind this trial and how I found out about it.  Anyway,  it's exciting because there IS evidence that there is benefit in Her2 - and Her2 low patients for Herceptin.  This link is to a new trial NSABP B-47 , patients are randomized to TC or AC plus/minus Herceptin (for 1 year I think).  Exciting stuff.  You're breaking new ground here!

    I've also read that Avastin can have good effect in triple negative, especially BRCA +.  The PARP inhibitors look good, too.    

    Will be thinking of you.  Hope your treatments really do the job,  B. 

  • Miller1353
    Miller1353 Member Posts: 84
    edited August 2011

    My 1.4 cm tumor was 1% estrogen, 40% progesterone and Her2-. My oncologist treated me as a triple negative for chemo (4 rounds A/C, 4 rounds T), but put me on Aromasin for five years. I guess I'm in the middle, so she played both sides of the fence. She said that the Aromasin may not work for a large percentage of women like me, but the percentage was not zero that it might work. If I tolerated the side effects (which I can), it wouldn't hurt anything other than my pocketbook to try them.  From the onset, I said I would do ANYTHING to improve my odds of survival. I guess she heard me. :)

  • Bren-2007
    Bren-2007 Member Posts: 6,241
    edited August 2011

    Sherri .. I tried to locate that article in Cure magazine and couldn't find it online.  I was HR2 ++ and wasn't offered Herceptin.

    If you can find the article for me, I would really appreciate it.

    Thanks,
    Bren

  • bak94
    bak94 Member Posts: 1,846
    edited August 2011

    Gitane-are there any completed studies that show that herceptin is useful in low her2 patients?

    What about studies for low er/pr showing benefit?

    Thank you all so much for your information, it is so hard to sort through all of this sometimes!

  • Gitane
    Gitane Member Posts: 1,885
    edited August 2011

    In the NSABP B-31 study,  available blocks were tested centrally with FDA-approved Her2 FISH assay.  Surprisingly, there was no association between Her2 gene copy number and benefit from trastuzumab (interaction p=0.60)  Even patients with normal gene copy numbers appeared to benefit from Trastuzumab treatment (RR- 0.40)

    This finding was studied, restudied and scrutinized extensively by many experts in many ways.  Independent study results clearly suggest that the benefit may not be restricted to Her2 positive patients as currently defined. They don't know if current clinical essays are not precise enough or if there are other molecular determinants of response besides Her2.  The current thinking is that the latter is true.  Another possibility may be that there there are micromets that are Her2+ in patients with Her2-  tumors.  This has been demonstrated by several investigators in small-scale studies that measured Her2 in circulating tumor cells.  I am sorry, but I don't have those studies, but I'm sure your oncologist can find them.

    Analysis of NSABP B-31 outcomes did not find any genes or sets of genes or clinical variables (like age, ER, size, nodes, etc.) that predicted benefit, but they found that women with ER+, 1-3 positive nodes, and t-size <2cm didn't seem to benefit statistically, even those that were Her2+.

    There is an experimental assay, the NanoString-based HER2 assay, that the NCI is recommending be used in the NSABP B-47 protocol.  It has identified a set of genes, measures their mRNA, and seems to identify those that may benefit from trastuzumab better than other measures.  I believe that this either is or was written up in The New England Journal of Medicine, but I haven't looked for it yet.

    I was able to get all this info by googling NSABP B-47, then downloading a PDF document (30 pages long) I found on page 3.  It's called "Final Progress Report for Research Projects Funded by Health Research Grants" about research done between 2/08 and 12/09, then presented to NCI in 2/10.  

    I know this is long, but if it will help you I'd be very happy,  Hugs, G. 

    Edited to add this great discussion I found.

    http://podcast.researchtopractice.com/podcast/pdf/bcu/BCUTT1_09.pdf

    Starts talking about Her2 and B-31 down on page 9 with lots of references/history for your oncologist.   

  • bak94
    bak94 Member Posts: 1,846
    edited August 2011

    Gitane, I am impressed with your research! I will look at the links you provided. I must admit much of this I do not understand. I feel very fortunate to have a doctor that stays on top of all of this information and then people like you to help me understand what my doc is saying. This seems to be good news for many of us.

  • Bren-2007
    Bren-2007 Member Posts: 6,241
    edited August 2011

    Bumping topic .. hoping Sherri will see my note about the website article!

    Thanks,

    Bren

  • Bren-2007
    Bren-2007 Member Posts: 6,241
    edited August 2011

    Thanks Sherri ... I was hoping it was from a recent article on the website.  Of course, I'm four years out now from treatment, so I imagine it would be much too late to start Herceptin for a HR2++.

    hugs,

    Bren

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