Her2 + not responsive to Tamoxifen?

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lisasinglem
lisasinglem Member Posts: 315

I met with my oncologist this week and we were talking about hormonal drugs (I'm also ER+), and he said there was new research to show that pre-menopausal women with Her2 + do not respond as well to Tamoxifen - the recurrance rate is higher, even if they had Herceptin.  So he is talking about shutting down my ovaries using a drug, and then giving me an aromatase-inhibitor like Arimidex, which is usually used for post-menopausal women.

I'm just wondering if anyone else had heard this.  He says it is new research, and we don't have to make a decision until after the chemo is over in December/January.  So, I'm doing some of my own research.  I've heard so many bad things about Arimidex. :-(

Comments

  • LouLou40
    LouLou40 Member Posts: 180
    edited July 2010

    There are a few threads here about Her2+ BC being resistant to Tamoxifen, or google her2 BC and tamoxifen for info.

    I'm 39 and my Onc started me on Arimidex last Nov as I was in Menopause from the chemo and he thinks it's a better option for Her2. He said we would discuss tamoxifen if my period came back or ovary removal to stay on a an AI long term.

    My blood tests that I have every 3 months indicate that Menopause looks permanent and I tolerate the Arimidex well with only minor SE's. I'm very fit and active and I think that really helps with any joint pain, I find if I sit for a long time that's when I get a bit of stiffness, but nothing to complain about.

    My BMD scan showed ostopenia before commencing the Arimidex so having Zometa to prevent further bone loss.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2010

    I did a quick internet search for Her2 and Tamoxifen, and on the Google page, a few entries under the link to this thread, I found a link to this summary of a study.  They conclude the summary:

    "Earlier suggestions to the contrary may have been due to failure to rigorously exclude ER-negative tumors, which are much less likely to respond to tamoxifen and more likely to have high HER-2/neu levels."

    http://clincancerres.aacrjournals.org/content/4/1/7.abstract

  • prairie-girl
    prairie-girl Member Posts: 5
    edited July 2010

    Lisa, I took the cyp2d6 test to determine if I was metabolizing tamoxifen efficiently because I was not having any side effects whatsoever. The result showed I was an intermediate metabolizer, which means I could be getting a reduced benefit from tamoxifen, and there is some evidence that reduced metabolism for her2+ patients could have significant implications regarding recurrence. My onc switched me to Femara (letrozole), which is an AI shown to be effective for her2, and goserelin (Zoladex) for ovarian suppression. I am having an oopherectomy tomorrow so I won't have to have the goserelin injections and can be sure the AI is doing its job because I will definitely be post-menopausal. The uncertainty about tamoxifen and her2 was causing alot of anxiety for me, and because I am 46 and not planning to have more children I feel this is the right decision for me. All the best to you.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2010

    Just my experience:  I have Zoladex injections every month and I am taking Arimidex.  (actually am having my ovaries removed on the 29th so as not to have that injection anymore).

    My Arimidex SE's really haven't been that bad.  Honestly.  I was thrown into menopause, so of course there are the expected symptoms of that.  Some joint pain.  Mostly shoulders and knees.  But nothing so bad that I can't handle it.  More of an annoyance than anything.  For me, it has been very doable.  Laughing

    Best of luck to you, Lisa.  Sorry this has happened to you.  If you need anything, just PM me.  I will help best I can. 

    Lisa

  • helena67
    helena67 Member Posts: 357
    edited July 2010

    Just my 2 cents, I removed my ovaries too for the same reason. I have been on an AI (femara) for over a year now. I think the side effects are quite managable and they are mild. What I notice the most is a slight joint stiffness, for example in my wrists (as I type), or when I walk down the stairs in the morning. It gets better with exercise. And perhaps I should say that I feel less energetic than I used to. The joint stiffness is worse in the beginning, the first few months. Then it gets better.

    I sleep well at night and I have not noticed any weight gain or hair loss. My hair is more dry than it used to be though. Tamoxifen has side effects too. But everyone is different so everyone will have a different experience.

    Of course it would be nice not to have to take this stuff, but what can you do....

    -Helena.

  • TriciaK
    TriciaK Member Posts: 362
    edited July 2010

    I had the same conversation with my onc and did'nt like tbe potential serious side effects of tamox.

    At the same time I read that our type of cancer may respond better to an A1  so had an ooph, it was the easiest op ever and recovery was quick!

    I've been taking arimidex for four years and still clear at five years out, I hope my onc will leave me on this drug for another five !!!!:)

    Tricia x

  • IsThisForReal
    IsThisForReal Member Posts: 384
    edited August 2010

    I also spoke to my onc about this.  Since I am 46, she thinks it's best I go on tamox and see if menses returns since I am in chemopause.  If they do return, she will refer me to an ob/gyn and I will have an ooph. 

  • lago
    lago Member Posts: 17,186
    edited August 2010

    I am curious about this too. I have read info stating that many Her2 + don't respond to Tamoxifen but that doesn't mean that all won't. I'm 49 and most likely perimenopausal. I'm sure the Chemo will swing me into menopause (at least I hope so)… mom went through it at 51, sister finished around 53. I'm sure my period won't come back and that's just fine. I don't need it anymore.

     But if they have to pull my ovaries in order to survive I'll do it. Right now though I know nothing. Just got my surgery date today: 8.31.2010

     Bottom line is there are folks in our situation that beat this. I plan on being one of them and you all should too. Remember when diagnosed we all said "Why me?" Well as far as survival why not ask "Why not me?" Yes it's our turn.

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