NED but have concerns about starting tamoxifen

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  • DianeBC
    DianeBC Member Posts: 3,881 Member
    #22
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    mimivac said:

    Some info about testing for menapause
    Lorrie, I found this link about the FSH test for menapause: http://womenshealth.about.com/od/menopause/a/menotesting.htm

    Maybe you can ask for something similar from your gynocologist.

    Mimi

    Thanks Mimi for this advice
    Thanks Mimi for this advice too!


    Huge congrats to you Lorrie for NED! I am so very happy for you!
  • carkris
    carkris Member Posts: 4,553 Member
    #23
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    DianeBC said:

    Thanks Mimi for this advice
    Thanks Mimi for this advice too!


    Huge congrats to you Lorrie for NED! I am so very happy for you!

    thanks for this valuable
    thanks for this valuable info Mimi!
  • Kylez
    Kylez Member Posts: 3,761 Member
    #24
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    mimivac said:

    Lorrie,
    Congrats on being NED!! That's great. As for your situation, I agree it can be complicated. Being a poor metabolizer of Tamoxifen and taking SSRIs are two different issues. I am not a doctor, but here is my understanding. People who are poor metabolizers of Tamoxifen who are pre-menapausal will often do ovaraian suppression therapy (Lupron or similar) or ovary removal along with an AI. I wasn't aware that pre-menapausal women who are poor metabolizers could still take Tamoxifen. This doesn't make sense to me. Did the doctor exmplain that?

    As others have explained, taking SSRIs can further interfere with Tamoxifen effectiveness.

    I was also under the impression that being in permanent manpause or not could be tested. Waiting 2 years to see? I'm not so sure about that.

    I am going to post some stuff a doctor friend posted on another board about Tamoxifen metbolization. I think you are not being treated very well by this oncologist. Even if Tamoxifen is the best drug for you, he should address each and every one of your concerns and you shouldn't have to be in the dark about what to do. That's wrong.

    Ok, let me find that post for you....

    Mimi

    Sending you congrats on Ned!
    Sending you congrats on Ned! Wonderful news!


    My oncologist has recommended Tamoxifen for me, but, I haven't taken it yet.


    Good luck!
  • carkris
    carkris Member Posts: 4,553 Member
    #25
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    Kylez said:

    Sending you congrats on Ned!
    Sending you congrats on Ned! Wonderful news!


    My oncologist has recommended Tamoxifen for me, but, I haven't taken it yet.


    Good luck!

    emailed my onc he said he
    emailed my onc he said he thought the research was not definative. I will revisit this with him soon.
  • Ritzy
    Ritzy Member Posts: 4,381 Member
    #26
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    mimivac said:

    Some info about testing for menapause
    Lorrie, I found this link about the FSH test for menapause: http://womenshealth.about.com/od/menopause/a/menotesting.htm

    Maybe you can ask for something similar from your gynocologist.

    Mimi

    Thanks for your post Mimi!

    Thanks for your post Mimi!
  • New Flower
    New Flower Member Posts: 4,294
    #27
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    carkris said:

    emailed my onc he said he
    emailed my onc he said he thought the research was not definative. I will revisit this with him soon.

    I had a discussion with my oncologist about genetic
    testing for Tamoxifen several months ago. The clinical data is limited and sample was relatively small. The new trend, which was discussed in San Antonio last Nov.Patients under 40 years old should be put on Tamoxifen without genetic testing. older patients who may take aromatase inhibitors could benefit from genetic testing and make a choice between Tamoxifen and aromatase inhibitors.
  • Megan M
    Megan M Member Posts: 3,000
    #28
    Options
    mimivac said:

    Lorrie,
    Congrats on being NED!! That's great. As for your situation, I agree it can be complicated. Being a poor metabolizer of Tamoxifen and taking SSRIs are two different issues. I am not a doctor, but here is my understanding. People who are poor metabolizers of Tamoxifen who are pre-menapausal will often do ovaraian suppression therapy (Lupron or similar) or ovary removal along with an AI. I wasn't aware that pre-menapausal women who are poor metabolizers could still take Tamoxifen. This doesn't make sense to me. Did the doctor exmplain that?

    As others have explained, taking SSRIs can further interfere with Tamoxifen effectiveness.

    I was also under the impression that being in permanent manpause or not could be tested. Waiting 2 years to see? I'm not so sure about that.

    I am going to post some stuff a doctor friend posted on another board about Tamoxifen metbolization. I think you are not being treated very well by this oncologist. Even if Tamoxifen is the best drug for you, he should address each and every one of your concerns and you shouldn't have to be in the dark about what to do. That's wrong.

    Ok, let me find that post for you....

    Mimi

    Lorrie, great news that you
    Lorrie, great news that you are Dancing with NED! We all want a chance for that!


    Also, thank you Mimi for your postings. Lots of good information for all of us!
  • Balentine
    Balentine Member Posts: 393
    #29
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    Megan M said:

    Lorrie, great news that you
    Lorrie, great news that you are Dancing with NED! We all want a chance for that!


    Also, thank you Mimi for your postings. Lots of good information for all of us!

    still waiting to hear from nurse
    about getting a 2nd opinion from a different oncologist. There are supposedly 3 of them at the cancer center. I talked to the social worker yesterday and explained everything to him and talked just like the onc....he said...well....you should listen to your doctor above all else. I had to explain to him in tears that this is my life....and reiterate the fact that this onc looked at my blood work that stated I am a poor metabolizer....told me it may or may not work....shook my hand and said goodbye. Then when I researched what this poor metabolism meant for me....that it could actually increase my chances of a recurrence....well...who wouldn't be angry that other options were not looked at. He said that the case may be that there are no other 'better' alternatives. This may be true but it would have been nice if he took the time to discuss this with me instead of just giving me something that they use across the board for all estrogen positive bc patients. And that is my case....you cannot put us all in one box if there is something that you see in the blood work that takes us out of that box and puts up a red flag. I will let you know what they say if they call me back. God bless.
    Lorrie
  • Ritzy
    Ritzy Member Posts: 4,381 Member
    #30
    Options
    Balentine said:

    still waiting to hear from nurse
    about getting a 2nd opinion from a different oncologist. There are supposedly 3 of them at the cancer center. I talked to the social worker yesterday and explained everything to him and talked just like the onc....he said...well....you should listen to your doctor above all else. I had to explain to him in tears that this is my life....and reiterate the fact that this onc looked at my blood work that stated I am a poor metabolizer....told me it may or may not work....shook my hand and said goodbye. Then when I researched what this poor metabolism meant for me....that it could actually increase my chances of a recurrence....well...who wouldn't be angry that other options were not looked at. He said that the case may be that there are no other 'better' alternatives. This may be true but it would have been nice if he took the time to discuss this with me instead of just giving me something that they use across the board for all estrogen positive bc patients. And that is my case....you cannot put us all in one box if there is something that you see in the blood work that takes us out of that box and puts up a red flag. I will let you know what they say if they call me back. God bless.
    Lorrie

    Yes Lorrie, let us know what
    Yes Lorrie, let us know what you find out. Taking the tamoxifen pill, in my opinion, isn't right for everyone. You are so right that if you are a poor metabolizer that it might do you absolutely no good at all and put you at risk for other cancers and problems. But, I am not an oncologist, so, I don't know everything. You are being very smart by researching all of this and questioning it. Hope to hear news from you soon!


    Sue :)

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