Question about tamoxifen

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Nancy2581
Nancy2581 Member Posts: 1,234
edited August 2016 in Hormonal Therapy - Before, During, and After

Just curious how many of you were tested to see how well you metabolize tamoxifen? Another member here posted a link to kailosgenetics where you can get the test for $99. They do contact your MO. I asked my MO if I should do it and she said it was not necessary. So I was just wondering how many of you had the test done (not necessarily from this place, but through your dr?)

Thanks

Nancy

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited August 2016

    Very interesting Nancy.

    Did you ever figure out the if T was causing your platelet issue?

    I'm going to ask my onc about this test to see what she thinks.

    Thanks for the info!

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  • ksusan
    ksusan Member Posts: 4,505
    edited August 2016

    My MO doesn't think it's very accurate/informative. If I really wanted to do it, I'd go ahead and do it anyway.

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  • Nancy2581
    Nancy2581 Member Posts: 1,234
    edited August 2016

    Jill - you're welcome. About the platelets it seems I am a clotter. Even so I don't think that is why they are dropping - still think it's the tamoxifen, but I'll have to see where I'm at in October.

    ksusan - I think that's how my MO feels, but some oncs think its a good thing to do. Why can't we all just agree lol

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  • snorkeler
    snorkeler Member Posts: 145
    edited August 2016

    I asked my MO about this and she said that she orders the test if someone shows absolutely no side effects from tamoxifen.

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  • labelle
    labelle Member Posts: 721
    edited August 2016

    My OC doesn't think the tests for this are very accurate or the results especially meaningful and declined to order this type of test for me when I discussed it with her.

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  • Lisey
    Lisey Member Posts: 1,053
    edited August 2016

    if your going to get the test, do what I did and get the complete for $149. I got over 50 pages of reports, found out I'm a met/met COMT enzyme, which has a lot of BC implications and also an ultra rapid processor for Tamox. It was HUGE finding out so many details. Plus some of chemo won't work on me, and I'd never have known of not for this test. I ordered a test for all my children, as an insurance policy for them. This test was amazing. Do a search for Kailos on these boards and you'll see a Ton of details.

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  • Lisey
    Lisey Member Posts: 1,053
    edited August 2016

    Here are some pages from the test... It was an amazing test for $149.. and I highly suggest doing it. Not just for Tamox, but for all the major medication pathways. Check out my chemo report. Due to me being an ultra-rapid, some Chemos wouldn't work or be toxic.

    image

    image

    image

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  • Frill
    Frill Member Posts: 311
    edited August 2016

    This is great. I wonder why we don't all have a report like this in hand just like a path report

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  • Nancy2581
    Nancy2581 Member Posts: 1,234
    edited August 2016

    Wow interesting LIsey. Thanks for posting that. I would love to order the test - just wish you didn't have to have a dr release the information. I would feel like I'm going behind my MO's back since she already said it's not necessary to do the test. I really do like my MO.

    Snorkeler - I really don't have side effects except for hot flashes which I hate. I asked my MO about lack of symptoms and if that meant it was wasn't working. She said no.

    Really bugs me - some once say this and some say that. Some will order this test and others won't. Grrrr - frustrating

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  • Lisey
    Lisey Member Posts: 1,053
    edited August 2016

    Nancy, you can have your Primary Care doctor release it as well. I just called my kid's pediatrician and told them to expect a faxed release. They said no problem once they understand I wasn't asking them to pay (HMO) or create any tests as all - that I already ordered the genetics test. Any doctor can sign the waiver, not just your Onc. and keep in mind YOU order the test, not your doc. You can do everything all by yourself. The waiver is only to have Kailos email you the reports... even if they don't sign a waiver, the reports will still go to the doctor you specify (and it can be ANY doctor you have, not just your onc.) Docs do NOT order this test, you do.

    and Frills, I AGREE! Which is why I am doing it for my kids as well. They will get 50 pages of information, and for my daughter it will also include birthcontrol medicines and which ones are best for her pathways. There's a heart medicine document, as well as pain meds, tamox, others... I was VERY IMPRESSED with Kailos Genetics. Lastly, you get a plastic card with a QR code on it that allows any medical provider to see your reports in the event of an emergency... you just carry it in your wallet.

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  • Nancy2581
    Nancy2581 Member Posts: 1,234
    edited August 2016

    Lisey, I think I will discuss it again when I see my MO in person. I'm sure my family practice dr would do it. I would like to know because I find this fascinating lol

    Thanks of all of your help

    Nancy

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