NSABP B-47 Herceptin for HER2-Low Invasive Breast Cancer

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  • CityFi
    CityFi Member Posts: 95
    edited June 2012

    Jenrio, I'm reading HER2 which is referred to as the biograph of herceptin, and it recounts the same anecdotes. Going to see if I can find the EMPEROR OF ALL ILLNESS.  

    And, yes, I am leaning towards enrolling in the trial and having faith that I will be in the group that is in my best interest regardless of what it might be. It's a process. :-) 

    Hope everyone is having a wonderful weekend.  

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  • CityFi
    CityFi Member Posts: 95
    edited July 2012

    So, ladies, I did join the study and was randomized to receive Herceptin. There's only on other woman at my hospital, and she's in the control group so I'm the first. Gonna milk it for what it's worth lol!  I asked if there was any transportation service because I really don't want to be on public busses and trains during chemo and may not always be able to get rides.  I think my wonderful nurse put her head together with the social worker to secure me a service. I wonder if Genentech is getting the bill. ;-) 

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  • Natlie38
    Natlie38 Member Posts: 39
    edited July 2012
    I joined the clinical trial and just received phone call from the study nurse that I am not part of the group that is going to be receiving Herceptin. Kind of feeling a little bad, on clinical trial but with no Herceptin makes me bad!
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  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited July 2012
    Natlie38- Chin up.....  you are still helping with the continued research.  Just because one receives the Herceptin in the trial is no guarantee that it benefits one who receives it.  The fact that you are opted to participate is a good thing !!!   
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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited July 2012

    I think the book is called The Emperor of All Maladies by Siddhartha Mukherjee. It is a wonderful historical perspective on cancer, cancer treatment and deals with fairly recent times as well. I was supposed to go into this trial but took the express train to stage IV instead. C'est la vie. Caryn

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  • dltnhm
    dltnhm Member Posts: 873
    edited July 2012

    Natalie. I am not receiving the Herceptin either. I just completed my chemo on 7/11. First 4 AC Dose Dense every other week followed by a 3 week break and then 12 weekly Taxol.



    It is what it is and I admit from time to time it bothers me. Participation will help others but honestly potentially being a statistic that proves worse without H down the road is not a comforting thought. Anyone who dismisses that with a "look at how you're helping others" and doesn't acknowledge the potential loss we might experience isn't really understanding the study and is dismissing our lives and emotions.



    A silver lining for me was the 12 weekly Taxol. I have read here on BCO of many women struggling with the Dose Dense Taxol and others receiving Taxotere and having a very difficult time. I am thankful for the study for that portion.



    My oncologist's follow-up schedule is more rigorous than the study protocol for us non H recipients. That also means a great deal to me.

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  • Natlie38
    Natlie38 Member Posts: 39
    edited July 2012

    Thanks Melrosemelrose! 

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  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited July 2012

    dltnhm- I wanted you to know that I appreciate your comments and feelings about the study.  It was not my intent to ever ignore or minimize the significance of the effect of not receiving Herceptin.  I am truly sorry that my comment to Natlie upset you. 

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  • jenrio
    jenrio Member Posts: 558
    edited July 2012

    Natalie and dltnhm,

    Sorry you did not get assigned to the arm of your preference.  AC+T12 is a good protocol.    Adding H may or may not prove to make a big difference for individual patients.   

    But the success/failure of this study could have enormous implications: because in future other effective Her2 biologicals could work well for Her2-low patients.   So that would increase treatment options for you and 30% of all BC patients.

    Thank you for joining this study and hope everything goes well.    

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  • dltnhm
    dltnhm Member Posts: 873
    edited July 2012

    jenrio.



    No need to explain what this study means. I get it. I understand research and I understand this study. I didn't enter it blindly and not ignorant. And the chemo did not render either of those. Why the mini-lesson on study research results?



    You definitely do not get it.



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  • dltnhm
    dltnhm Member Posts: 873
    edited July 2012

    Melrosemelrose.

    Thank you. I appreciate your sincere response.

    There are times ... as I wrote above "from time to time" ... when it bothers me. It doesn't consume me as I also wrote "it is what it is".

    And I think, from your response, you read all my posts in this thread, so you get me.



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  • jenrio
    jenrio Member Posts: 558
    edited July 2012

    i suppose joining a clinical trial and get assigned to control arm gave anyone the right to be a b****.   A sincere GL...

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  • dltnhm
    dltnhm Member Posts: 873
    edited July 2012

    Wow. Unbelievable. Just unbelievable and proof positive.

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  • jenrio
    jenrio Member Posts: 558
    edited July 2012

    I agree with you totally.   Internet is unbelievable and wow inspiring.   No matter what you say, how sincerely you say it, how carefully you say it, you may be talking to a cranky person at a cranky time and get a cranky response.    peace out.

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  • dltnhm
    dltnhm Member Posts: 873
    edited July 2012

    Calling someone a b or cranky doesn't make you sincere or thoughtful. Your true colors ring out with each post.

    Time for you to look in the mirror and stop this nonsense.

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  • 2miraclesmom
    2miraclesmom Member Posts: 131
    edited July 2012

    I am a little confused on this study. This is the exact treatment I am receiving except for one small difference. I started Herceptin in December when I was still receiving AC. Everything else was the same and is the same. I am now receiving the Herceptin once every 3 weeks and will continue until Dec. 12, 2012. I was never told it was a study though. Is it a study because it is being used on Her2- patients?

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  • dltnhm
    dltnhm Member Posts: 873
    edited July 2012

    The study has to do with women are classified as Her2- when in actuality they are Her2 LOW meaning the Her2 score is a 1 or 2 as opposed to a 3.



    A study was done retrospectively on women whose tumors were incorrectly identified as Her2+ based on the Her2+ definition of a score of 3. What they found was evidence that these women who should not have received Herceptin based on their 1 or 2 score and the standard treatment protocol actually showed a benefit of receiving Herceptin.



    The purpose of the study is to learn if adding Herceptin will help to prevent recurrence in women who are Her2 Low. A second purpose is to learn if adding Herceptin will help women who are Her2 Low live longer. Only women who are Her2 Low are involved in the study.



    They already know that women who are Her2+ benefit.

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  • jenrio
    jenrio Member Posts: 558
    edited July 2012

    Hmmm.   My true colors...   Not a politician, for sure.   I negate everything that I said, unless they are factually correct then negating it would be untrue.  

    In addition, I sincerely thank you for your mini-lessons, you explain the trial very well.    Peace.

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  • Natlie38
    Natlie38 Member Posts: 39
    edited July 2012

    jenrio and dltnhm, peace and lets all connect with each other without being judgemental to others! Thankyou for each of your response and contributing to this forum. Love. 

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  • MandaLynn
    MandaLynn Member Posts: 73
    edited August 2012

    Can you enroll in this trial even if you are finished with chemo?

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  • jenrio
    jenrio Member Posts: 558
    edited August 2012

    Nope.    Maybe there will be more study in future with different design for Her2-low patient.   But not this one.

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  • CityFi
    CityFi Member Posts: 95
    edited July 2013

    Well, it's been a while so I thought I'd post for anyone who might be following this discussion. I'm at the tail end of my treatments for this study.  Just two more to go and the next one is Friday. I actually feel great!  Interestingly, many women say that the Herceptin tires them, but that wasn't the case with me.  It could be because of the supplements I took. My oncologist was fine with my continuing with COQ10 and alpha lipoic acid during treatment. My infusions only took a half-hour. I also had ECHOS to check on my heart every three months. One ECHO was slightly different so I had a followup MUGA which was beautiful. I actually believe that the ECHO was off because it was the first after my implant exchange! I mean, if those things are based on sonar technology, surely, going from a hard tissue expander to a soft implant had to have  thrown off the technician, right? LOL!  I did gain weight, but that began during chemo since I was allowing myself to indulge after radically changing my diet before the mastectomy. Eating fairly cleanly for so long may have also helped with all the treatments. I pretty much sailed through chemo, and Herceptin being a targeted therapy, was much easier.  If anyone has any questions, don't hesitate to ask.  Love to all. 

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  • JennaJMU
    JennaJMU Member Posts: 97
    edited July 2013

    I'm in this trial, in the Herceptin arm. I was 2+ in my pathology. I just did round #2 of taxol and Herceptin last Friday...so far so good!

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  • Kellee318
    Kellee318 Member Posts: 20
    edited October 2013

    I am pretty new to this forum and did a search to see if I could find anyone who was in this trial.  I just told the nurse at my hospital today that I'll participate.  Of course I have no idea yet whether or not I'll receive the Herceptin.  My HER2 was 2+.

    I found it very interesting that she said only 3% of adults will agree to participate in clinical trials while 60% of children are enrolled.

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  • ashley2
    ashley2 Member Posts: 62
    edited October 2013

    hello Kelee, I am in this trial, in herceptin arm, with her2+. I have finished chemo in 29 08 2012  and herceptin in June 2013. I did AC+TH and radiation25. I am pretty OK now, I work full time and try to forget....

    please ask what do you want to know  about........

    I wish you good luck .....you'll be OK

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  • EJK
    EJK Member Posts: 1
    edited October 2013


    Hi, all. I just stumbled across this site while looking for information about this study. I'm eligible and have just decided today that I will participate. It's great to find so many others discussing their experiences with it, and I hope to be able to chat with you as the months go by.

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  • GraceBer
    GraceBer Member Posts: 43
    edited January 2014

    Hi all,

    I've been asked to participate in this study as well.  I'm very torn.  I am waiting for my Oncotype score (that comes tomorrow) but I was expecting to do 4 rounds of TC and then 5 years of Tamoxifen.  With this study, I would have to do either 6 rounds of TC or the ACT (of course, with or without Herceptin).  Also, to add to this, I just saw another oncologist yesterday for a second opinion and I really like her and her treatment center.  I want to switch but they're not participating in the trial (they are participating in a cold cap trial - so, that's something).   Part of the reason for seeing this second opinion MO (other than her amazing reputation) is I wanted to know her feelings on the trial.   She likes it for me.  However, she will give me her definitive opinion after I forward her my Oncotype score and she presents my entire case to her colleagues.  

    Anyway, if I do decide to participate, I just don't know if I can take yet another blow if I get assigned to the control arm of the study.  As I see it, I've had some sh*tty luck lately.  

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  • martha323
    martha323 Member Posts: 79
    edited May 2014

    Is this discussion still active? I completed this trial March 14, 2014 and would like to compare notes! 

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