Any Her2-negative patients on Herceptin?

Options
TectonicShift
TectonicShift Member Posts: 752
edited June 2014 in Stage III Breast Cancer

I'm wondering if there is anybody out there who is Her2 negative but is being given was given Herceptin anyway. There is some preliminary data that shows it might help Her2 negative patients too.

I know there is a big trial going on right now testing Herceptin in low Her2 patients, but I'm wondering if anyone was just given Herceptin outright by their oncologists as an aggressive way of treating stage 3. (Sort of like some people are getting metformin directly from their doctors rather than going on trial.) Thanks.

If I could find an oncologist to give me Herceptin I would take it. (Too late to join the trial.) Hey you MD Anderson patients, do they give Herceptin to Her2 neg patients? MDA seems like a place that might do it. They are so aggressive in their treatment plans.

· Share on FacebookShare on Twitter

Comments

  • kathleen1966
    kathleen1966 Member Posts: 793
    edited May 2012

    bumpin it for you!

    · Share on FacebookShare on Twitter
  • TectonicShift
    TectonicShift Member Posts: 752
    edited August 2014

    This is the article from NEJM that makes me think they WILL eventually approve Herceptin for low Her2 patients. That could mean a benefit for about half of all breast cancer patients. Fingers crossed!

    http://www.nejm.org/doi/pdf/10.1056/NEJMc0801440 

     OH - sorry, the link doesn't work. Google the following title and you will find the article:

    HER2 Status and Benefit from Adjuvant Trastuzumab in Breast Cancer


    page2image212312
    page2image212584
    page2image212856
    page2image213128
    page2image213400
    page2image213672
    page2image213944
    page2image214216
    page2image214488
    page2image214760
    page2image215032
    page2image215304
    · Share on FacebookShare on Twitter
  • TectonicShift
    TectonicShift Member Posts: 752
    edited August 2014

    bump

    · Share on FacebookShare on Twitter
  • Gitane
    Gitane Member Posts: 1,885
    edited August 2012

    I'm glad you are keeping up with this.  I'm interested in it, too.  I hope the ladies who are participating in the B-47 trial ( is that the number? ) post to let us know what their experiences are.  Thanks, G.

    · Share on FacebookShare on Twitter
  • TectonicShift
    TectonicShift Member Posts: 752
    edited August 2014

    Some important new information on this topic: 

    HER2-POSITIVE STEM CELLS FOUND IN HER2-NEGATIVE BREAST CANCER

    Summary: many Her2 negative breast cancers have small clusters of stem cells that are actually Her2 positive. This may explain why Herceptin seems to work on Her2 negative BC.

    If you can get into the Herceptin for Low Her2 trial, do it!!

    · Share on FacebookShare on Twitter
  • Gitane
    Gitane Member Posts: 1,885
    edited December 2012

    Fantastic information from reliable source!  Thank you so much for posting this.

    · Share on FacebookShare on Twitter
  • lightandwind
    lightandwind Member Posts: 754
    edited December 2012

    This is wonderful news! Thanks for posting TS!

    · Share on FacebookShare on Twitter
  • TectonicShift
    TectonicShift Member Posts: 752
    edited August 2014

    Even more new info and data:  http://journals.lww.com/oncology-times/blog/FRESHSCIENCEforClinicians/pages/post.aspx?PostID=44

    · Share on FacebookShare on Twitter
  • TectonicShift
    TectonicShift Member Posts: 752
    edited September 2013

    Bumping, just in case anyone knows anyone who is low Her2 and getting Herceptin (off trial)

    · Share on FacebookShare on Twitter
  • Pure
    Pure Member Posts: 1,796
    edited January 2013

    Funny I was just talking to a bc researcher about this a few days ago-the problem is Herceptin can be toxic for your heart so I think ( me personally) I would want to know it would benifit me before I took it...I was actually asking if they find out that LOW her 2 patients would benifit would I get to go back and get it..The answer was no and shute I am forgetting why!lol

    · Share on FacebookShare on Twitter
  • TectonicShift
    TectonicShift Member Posts: 752
    edited September 2013

    Oh, Pure, that makes me crazy! Ha ha! I don't see why we can't have it when it's approved, even if it's approved in five or six years... 

    · Share on FacebookShare on Twitter
  • TectonicShift
    TectonicShift Member Posts: 752
    edited August 2014


    Latest update on the topic of Herceptin for low Her2: http://www.newsdaily.com/health/ca0ac5669598390ca24b8db87a3be677/study-predicts-moderate-benefit-of-trastuzumab-in-her2-negative-breast-cancer






    They are still recruiting people for the phase III trial.


    I think this is the trial page from clinical trials dot gov: http://clinicaltrials.gov/ct2/show/study/NCT01275677?term=trastuzumab+her2+negative&recr=Open&rank=15&show_locs=Y#locn


    There are 1032 trial locations. If you can get on it, I honestly believe you'd be doing yourself a favor. I really think in four or five years' time they will know that Herceptin does reduce recurrences in Her2 negative (Her2 low) patients.






    To you newly diagnosed patients, I know you are probably overwhelmed but this is a trial you have to start right away near the beginning of treatment so take a look at the list of places that is offering it and maybe you can find a good match for yourself. You must advocate for yourself.

    · Share on FacebookShare on Twitter
  • JennaJMU
    JennaJMU Member Posts: 97
    edited December 2013


    tectonic, I'm in the B-47 trial and have been getting Herceptin since June. First with 12 weekly Taxols and now every 3 weeks. I was 2+ on IHC but FISH ruled me negative. My ER was 100% and my PR was 80%. Now I'm kinda freaking out that its going to show that Herceptin won't benefit those with strong hormone receptors. What do you think?

    · Share on FacebookShare on Twitter
  • TectonicShift
    TectonicShift Member Posts: 752
    edited August 2014


    Hi, Jenna. I think you are doing the right thing. They don't really know yet exactly what's going on with Her2 expression and ER expression and the effects of trastuzumab. It's all in the theoretical stage, except they do know people who are HER2 positive do benefit. BUT NOT ALL people who are HER2 positive benefit, and they don't really know why. (A gene mutation on the PIK3CA gene might be one reason.) The phase III trial going on right now is the first one testing Herceptin in lower Her2 patients, plus the genetics stuff is SO NEW, so they really are just at the beginning of figuring it out.


    I suspect the reason low HER2 patients with extremely high ER didn't benefit is because people who are 100% ER already do so well. There are relatively few recurrences in 100% ER patients so there isn't really much room for even fewer recurrences if you know what I mean. Not much room for improvement. That is my a guess.


    That said, when a paper says "This group didn't benefit," that is statistically speaking - AS A GROUP. That does not mean that certain individuals didn't benefit. That's why statistics break down in small populations.


    Herceptin is a relatively benign drug. Really no side effects to speak of. I think you are absolutely doing the right thing to take it now when you can get it.


    I'm about 77% ER+ and HER2 2+ and I'm on Herceptin. I'd happily trade my tumor for one that is 100% ER+ if I could still stay on Herceptin.

    · Share on FacebookShare on Twitter
  • martha323
    martha323 Member Posts: 79
    edited May 2014

    Greetings! I'm in the B-47 trial and finished Herceptin on March 14 - a little over two months ago. Thanks for posting the links to the articles - I've read as much as I can find, but found new information here. My tumor was ER 90% and PR 50%, Her2 1+ . I don't know if I'll be fortunate and have moderate benefit, but I'm happy to be in the study. My echos were normal (hope my heart stays healthy in the future!) and the side effects I had were manageable - more fatigue and bloating toward the end, slower hair (re)growth, but it's hard to know if the SEs I experienced were/are lingering effects from chemo. Hope to hear from others in the study! 

    · Share on FacebookShare on Twitter

Categories