Report on my DNA Genetic testing - Enzyme pathways.. wow

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Lisey
Lisey Member Posts: 1,053
edited August 2016 in Chemotherapy - Before, During, and After

Hi Ladies, I wanted to call attention to a test I just got from a Gene Testing company called Kailos Genetics. I got it actually for the tamoxifen report to see what kind of CYP2D6 enzyme metabolizer I am. Turns out I'm an 'ultra-rapid' which is NOT what I was expecting at all! The test was really cheap - only $150 and it gave me 8 different reports. One of these reports was a 24 page custom medications for MY genetics. Check out this page on Chemotherapy. If I were to do Chemo, because I'm an UM on several different pathways, some of the chemos would actually not work or be toxic. I think I"m going to get all my kiddos tested just so they have a full report on themselves, as well as my husband. I think the fact we can all be empowered to know this about ourselves - on our own is crazy awesome. I wanted to share.

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  • exercise_guru
    exercise_guru Member Posts: 716
    edited August 2016

    I am so interested in this can you share how you were able to get your doctor to order this test

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  • sensitivehrt
    sensitivehrt Member Posts: 359
    edited August 2016

    I just ordered mine tonight!   https://www.kailosgenetics.com/   you input your information and your doctors info. They contact you doc to get permission to run.  I have an upcoming appointment and plan on asking my doctor to approve it.

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

    I ordered it just yesterday for my kids and husband as well. All I did is call their PCP's office and let them know the company was going to fax authorization forms. The nurse said no problem. As long as you are paying for it, doctors have no reason NOT to sign a waiver of release. By the way, they will run the test no matter... they just can't release the results to you until your doc signs the release. They WILL give the doctor the results no matter.

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

    BY the way, here is a working link for the test I ordered. I'm amazed at the results. I found out I was a COMT Met/Met (variety) and that actually makes me prone to BC as well because COMT eats estrogen and I"m low COMT.

    https://www.kailosgenetics.com/pgxcomplete


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  • Keepongoing
    Keepongoing Member Posts: 62
    edited August 2016

    Is it a blood test?

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

    It's a Cheek swab DNA test from one of the 8 licensed FDA approved and regulated DNA testing facilities in the U.S. It is a higher level lab than these 'DNA&Me' type companies. That is why they need to get your doctor's info, so they can stay licensed / regulated at the higher level.

    Here's a report on this company by Business Insider: http://www.businessinsider.com/what-a-kailos-genetic-test-is-like-2015-9 (keep in mind the author didn't order the 'complete' so she got just a minimal report. I got over 50 pages of information, including 24 pages specificially stating all the drugs that are good and bad for me, including my actual alleles and variations on all the different pathways. The author should have gotten the complete because that's what she was looking for.


    Why Kailos didn't run into the same problem as 23andMe

    Genetic Testing companies, like 23andMe, have run into trouble with the FDA for not getting its approval before making their genetic-health tests, which are pretty similar to the ones Kailos offers, available.

    But Kailos is already government regulated. As a Clinical Laboratory Improvement Amendments-regulated industry, Kailos' lab facilities are regularly inspected by the Centers for Medicare and Medicaid Services which is in charge of ensuring they're up to par.

    Also, having a physician analyze the tests on Kailos' end is a key way to steer clear of the roadblocks other genetic-testing companies face. Instead of providing uninterpreted information directly to a consumer, that information is going through a trained professional who can make sure it's interpreted accurately. Troy Moore, Kailos' chief scientific officer, told Business Insider the reason they opted for more specific tests for certain medications came from their background as a clinical lab.

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  • Keepongoing
    Keepongoing Member Posts: 62
    edited August 2016

    Thanks! Sounds like a great tool! I'm going to look into it

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