herceptin therapy in stage IV how long is too long?

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kayfh
kayfh Member Posts: 790
edited February 2015 in HER2+ (Positive) Breast Cancer

It's not that I'm not grateful for this treatment, honest. I just want to know if there are any Her+ mets people out there who have oncologists who are talking about seeing if going off herceptin after 2-3 years is a reasonable thing to do.

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  • kayfh
    kayfh Member Posts: 790
    edited May 2012

    I am going to post this elsewhere, I think.

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  • Jejik
    Jejik Member Posts: 191
    edited May 2012

    My oncogist in Arizona said he would keep me on it indefinitely. I ended up getting pregnant so I had to stop temporarily, and I live in a different state and see another oncologist now but I plan on pushing to stay on it indefinitely as originally planned. As much as I hate my port and having to go in for infusions every three weeks. My doctor told me that he has seen women stay NED on it for years. I know there are no guarantees...but I don't have any terrible side effects so I figure why not.

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  • Lauriesh
    Lauriesh Member Posts: 692
    edited May 2012

    I did a vaccine trial in Seattle, and the research dr I saw there (who also still sees patients) told me that she takes her stage 4 patients off Herceptin after they have been NED for one year.

    She said that there is no evidence that staying on it longer is beneficial.

    I know there are a few women on the HER2support site who went off after 6 or 7 years of being  NED, and are still doing well. 

    I have been NED for 15 months and am on both Herceptin and tykerb.  I don't have any plans to go off of it anytime soon.  

    Laurie  

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  • kayfh
    kayfh Member Posts: 790
    edited May 2012

    Lauriesh. Do you remember the name of the researcher? This is intriguing!

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  • MemaSue56
    MemaSue56 Member Posts: 2,129
    edited May 2012

    Hey Kay - How long have you been on Herceptin?  I'm a year now as of May 23 I think.  It was weekly during my TCH, then NED end of Sept and NED since.  Still doing H every 3 wks with Aromisin daily, and my onco intends to keep me on for minimum 3 years, as long as I can tolerate it...after that I don't kno.  I give credit where credit due...as far as keeping me alive...But this research thing is intriguing.   

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  • Lauriesh
    Lauriesh Member Posts: 692
    edited May 2012

    Hi Kay,

    I don't feel comfortable putting her name out on the internet, but if you think you want to contact her for a second opinion, pm me and I will send you her contact information.

    I wanted to clarify that what she said was that there is no research that staying on Herceptin for more than a year is beneficial.  My criticism of her position is that , at least for us,  there is never going to be a study that looks at this.  Someday there may be a retroactive study, looking back at survival rates of women who stopped at 1,2 or 6 years, but for now, no one knows.

    Dr. Slamon, who created Herceptin, reccomends that a woman who is stage 4 and NED stay on Herceptin for at least 4 -5 years. (A woman had went to him for a consult and that is what she posted on the Her2support site)

    Laurie

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  • kayfh
    kayfh Member Posts: 790
    edited May 2012

    Laurie: I understand completely, your point about not putting the researchers name out on the Internet. If she wanted to be known she'd be there already. I will pm you.

    You are right. The study which demonstrates the most efficacious length of treatment with herceptin in the mets setting will have to be retrospective. I can't imagine a randomized controlled study that could get past an ethics committee. Herceptin works well,but it has side effects, some of them life threatening! Most of us taking herceptin can deal with most of the side effects, but not all of us can. That small subset of women and men might be the source of the data on how long.

    I wish that there was someway that I could contribute to the body of knowledge for future people who get breastcancer.

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  • MiracleMileM
    MiracleMileM Member Posts: 103
    edited May 2012

    I am triple positive and diagnosed with Stage IV December 07.  I started herceptin in December and am still on it.  Scans indicated NED in about October of 08.  My oncologist recomends staying on it until it stops working or I develop a heart problem.  Then we'll figure out a different strategy.  My side effects are minimal. I like being NED and feel lucky to be on herceptin.  I only wish the herceptin could be shot into my cerebrospinal fluid because I am very fearful of brain mets and herceptin does not pass the blood-brain barrier.  And the herceptin seems to be very effective against my particular cancer.

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  • ninismom
    ninismom Member Posts: 20
    edited May 2012

    kayfh - I've been on Herceptin for 3.5 years, and so wish that there was some research that showed that those who are NED for a significant amount of time could stop at some point...

    Have you ever thought of stopping, despite what your doctor says? Are you experiencing negative side effects?

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  • PamelaA
    PamelaA Member Posts: 1
    edited January 2015

    I'm new to this site but happened to be searching info on how long to stay on Herceptin and found this discussion so thought I'd sign up and join in. I've been on Herceptin for 3 1/2 years and have been NED since Sept. 2011. Now that I am feeling so much better, I am beginning to wonder if I could feel comfortable to go off of it. I have stents in my LAD artery so am always afraid of the heart problems it can cause. We also never see anything showing what the long-term effects are. I just started seeing a new oncologist and my next visit I intend to discuss this very thing. I would love to see some statistics about patients going off of Herceptin, how long they've been off, and how they are doing. Don't know where to begin looking.

    I'm curious also to hear from anyone that has been brave enough to go off Herceptin.

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  • MiracleMileM
    MiracleMileM Member Posts: 103
    edited February 2015


    I'm stage IV from initial diagnosis with bone mets.  Adjv. carboplatin, taxotere, Herceptin for 6 treatments, then lumpectomy and IMRT radiation. 

    From the middle of December 2007 until the fall of 2013 I had a herceptin infusion every three weeks.  I changed to every 4 weeks so that I only had to come in about once a month for the infusion and an xgeva shot.  I like the every-four-weeks option and recommend it to other long-timers.  Per pet scans, markers and corroborated by how I feel, I've been NED since the fall of 2008.  It is tiring.  I go in at 3pm to minimize impact on work with infusion actually starting at about 4:45 or 5 p.m. (where I go they do not start defrosting the herceptin until the lab results are in and I am sitting hooked up in the chair (I have a port thank goodness).  I go home and go to bed and sleep through to the next morning.  Also on Wednesdays.  I refer to the herceptin treatment as an infusion or a biological.  I am very grateful for Herceptin and I'm on it until there is a progression and I get switched to somethin else.   My biggest fear is brain mets which as I understand affects 30 to 40% of HER+++ stage IV women..

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