"late" herceptin gals

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dberg
dberg Member Posts: 16
edited June 2014 in HER2+ (Positive) Breast Cancer
Hi all,
I don't visit as much as I used to, but I'm just wondering how all of you "late" girls are doing. It's hard to believe 2 years have passed since the big news broke at ASCO and then we all started getting herceptin "late." I heard from BethNY awhile ago, but think about the rest of you who lived on the boards while our oncs tried to figure out what to do with us.
So far, so good with me.
Diane
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  • debic
    debic Member Posts: 216
    edited May 2007
    What is "late" herceptin gals? I start herceptin next week.
    Debi
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  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited May 2007
    When the Herceptin trials showed it worked pretty well there were quite a few people who ended up being stuck without it, since there was no trial demonstrating whether it was useful for those who had at that time been out of chemo for more than a year who still had no evidence of disease. So despite the vacuum of help from the medical providers in terms of guidance, a number of women opted to pressure their oncs to prescribe it "off-label" for them. They are the group who are choosing to get "late Herceptin".

    I was over a year out from chemo at the time. I talked with 2 oncs about doing Herceptin and although one did provide the prescription for me I elected not to get it. So far I am NED and have more recently been eligible for the TEACH trial, which offers lapatinib to those who missed out on having Herceptin and which is considered more likely to take care of brain mets than Herceptin, as well as deal with 2 types of HER positivity rather than just the HER2 positivity. Those who have completed Adriamycin treatment are eligible for the trial as long as they haven't done Herceptin -- but the catch is that because it is a blinded trial, some will end up on placebo and some on lapatinib.

    AlaskaAngel
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  • dberg
    dberg Member Posts: 16
    edited May 2007

    Actually there were several of us who had just finished chemo, 2-3 months out.

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  • debic
    debic Member Posts: 216
    edited May 2007
    AlaskaAngel you and I have the same dx I just finished 4DDA/C and will start Taxol and Herceptin next week. You are the second person I have read talking about brain mets with HER2 this weekend I was not told this was a concern?
    Debi
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  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited May 2007
    Hi Debi and dberg,

    It is theorized that one possible reason HER2s might be more at risk for brain mets is because for the 40-50% of us for whom at least trastuzumab does work, it takes care of most of the body but because trastuzumab is a large molecule it is thought not to cross the blood-brain barrier and that leaves the brain unprotected from mets, so for some of us cancer sneaks there.

    Just like with any other risk involved with bc, later stages are at higher risk for this than stage 1's like you and me; however, it can and does happen even if much less frequently to stage 1's.

    Higher staged HER2's who are most proactive advise annual MRI of the brain. I don't personally do this. However, at one point when I was having ordinary vertigo and happened to have elevated liver function tests and alk phos, I did feel it was reasonable to get an MRI of the brain and did so. It was basically negative. So I then did physical therapy for a chronic left shoulder and neck muscle problem and that took care of the vertigo for me.

    I was diagnosed long enough ago that I missed out on dose dense as well.

    My reading also indicates that unlike the HR- gals who tend to recur early on or else have lower risk for recurrence as time goes by, HR+'s like you and I have lower risk initially but our risk continues clear out to 20 years.

    AlaskAngel

    P.S. To dberg -- My thoughts are that the onc's did provide some guidance to those who were just a few months out from chemo by saying that anyone less than a year out from chemo probably would benefit from late herceptin. They abandoned the rest of us to the wind in terms of herceptin, but they are offering the TEACH trial to us (placebo or otherwise). Hope that explains in more detail what I meant in my previous post.

    A.A.
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  • nagem
    nagem Member Posts: 353
    edited May 2007

    Just curious about your statement, "My reading also indicates that unlike the HR- gals who tend to recur early on or else have lower risk for recurrence as time goes by, HR+'s like you and I have lower risk initially but our risk continues clear out to 20 years." By HR, do you mean Her2neu? I thought the hormone-positive cancers had the longer window of recurrence high risk and the Her2neu+ cancers had a shorter but "riskier" window. But maybe by HR you mean hormone-responsive?

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  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited May 2007

    Yes, I mean ER+ and/or PR+ -- in terms of all bc.

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  • daisybell
    daisybell Member Posts: 58
    edited May 2007
    I had heard the opposite- that aggressive cancers were more likely to recur sooner rather than later.?

    Sue
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  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited May 2007
    Hi Sue, yes in general aggressive cancers recur sooner; but as I understand it, if you are comparing HER2, ER and/or PR negative with HER2, ER and/or PR positive, the HER2 positive and ER/PR negatives have a stronger risk in the first 2 years than the HER2 positive and ER/PR positives do; however, what risk there is for HER 2 positive ER and/or PR positives continues out to 20 years whereas it drops off somewhat for the HER2 positive ER and/or PR negatives as time goes by.

    A.A.
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