Important for Her2+ on Tamoxifen

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  • NanaA
    NanaA Member Posts: 293
    edited January 2010

    Orange,  I am her2+ and onc wants to put me on tamoxifin since I am having alot of joint paint and femara made it even worse.  I had the test and am an intermediate metabolizer.  What do you think.  I am not going to start anything else until I am done with the herceptin in March.  I could try another AI or I could go with the tamoxifin.  I am not sure what to do.  My onc is not very communicative.  If I had not asked about being tested he never would have even mentioned the possibility.I only have a couple months to decide.  Annette

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  • orange1
    orange1 Member Posts: 930
    edited January 2010

    Hi Annette - 

    If you are post-menopausal the most straight forward approach is to switch to an AI.  If you are premenopausal, the question is more complicated.

    If you are premenopausal, or don't want to go on an AI, It may be worthwhile to have your endoxifen level checked.  But I am not sure how available this testing is or the cost.  Its very new.  When I get a break at work (several weeks away) I will try to call around and find out.  Since several premenopausal women have asked this question, I'm trying to research and find out all the options and the pros and cons of each of them.   I'll post on this when I get all my information lined up.

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  • Warrior517
    Warrior517 Member Posts: 355
    edited January 2010

    Thanks Orange...I am eager to hear what you learn, too!!

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  • weety
    weety Member Posts: 1,163
    edited January 2010

    orange, I know you don't have all the info gathered, but. . . what even is an endoxifen level test?

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  • orange1
    orange1 Member Posts: 930
    edited January 2010

    Hi weety

    Tamoxifen is a prodrug - it is not active against BC.  It must be metabolized by the body into its active form called endoxifen.  The blood test measures the amount of endoxifen in your blood.  High levels should be associated with lower recurrence rates and lower levels should be associated with higher recurrence rates.  (I believe this has been shown, but can't quote the study off the top of my head.)

    CYP2D6 testing is an indirect way to guestimate how much active drug (endoxifen) will be in your body.  Theoretically, direct endoxifen testing should provide more meaningful information.  Therefore for intermediate metabolizers, endoxifen testing should provide guidence on weather or not you should continue to take tamox, or change approaches. 

    I'm going to start a new thread on some info about an interesting clinical study I saw.

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  • weety
    weety Member Posts: 1,163
    edited January 2010

    THanks Orange, I saw your other post and will read it.

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  • weety
    weety Member Posts: 1,163
    edited January 2010

    Cristl, I'm just wondering if you ever found out any more info about being on lupron to suppress the ovaries, but not on tamoxifen or an AI. 

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  • lexislove
    lexislove Member Posts: 2,645
    edited January 2010

    http://www.sciencedaily.com/releases/2009/02/090224163600.htm

    This is an interesting article for those woman who CAN NOT take Tamox for whatever reasons. I was reminded about this with my onc last week, when I met with him to discuss my recent cyp2d6 test----which I tested as a poor metabolizer. I thank god , for being on Lupron injections at the same time as Tamox. I feel like the Lupron has picked up the slack since the Tamox wasn't doing much...Im switching to Femara in a couple of weeks

    There still needs to be longer follow up, but it looks promising.

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