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Distant recurrence risk

Posted by brighterdays @brighterdays, Mar 31, 2023

My oncologist ran Onco DX score for me which came back as 16. I asked her to run RSClin and my results came back 3-4% less chance of distant recurrence in 10 years with chemo (regardless of which endocrine therapy I choose). That puts me at 89-94% DFS without chemo. I’m trying to understand is that 3-4% a huge difference?

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Zebra | @californiazebra | Apr 25, 2023
In reply to @brighterdays "Thank you for such detailed insight. My oncologist mentioned CYP2D6 to me and told me to..." + (show)
@brighterdays

Thank you for such detailed insight. My oncologist mentioned CYP2D6 to me and told me to contact my insurance myself to see if they will cover the test. I would think it’s her job to do that. She thinks based on my race I may not be able to metabolize it.

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Hi @brighterdays, I had United Healthcare in 2013 and they covered the CYP2D6 test at that time, but again I have genetic mutations and that can make a difference. It might be worth calling your insurance provider to ask so you don't get stuck with a big bill. Let them know it would be to see if you can metabolize Tamoxifen because the test may only be covered for certain drugs. Yes, I do think your oncologist could offer better customer service and check for you. I hadn't heard of anything race related so I googled and get conflicting data on that. I didn't see any real alarm bells for any race, but google that yourself to see what you find. I did read only 5% of the general population is a CYP2D6 poor metabolizer, but again google and see what you find. You also don't want to be an ultrarapid metabolizer. You want to be a normal metabolizer. Don't we all just want to be normal? Normal is underrated. 🙂 Best of luck to you.

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brighterdays | @brighterdays | Aug 5, 2023
In reply to @californiazebra "Hi @brighterdays, I had United Healthcare in 2013 and they covered the CYP2D6 test at that..." + (show)
@californiazebra

Hi @brighterdays, I had United Healthcare in 2013 and they covered the CYP2D6 test at that time, but again I have genetic mutations and that can make a difference. It might be worth calling your insurance provider to ask so you don't get stuck with a big bill. Let them know it would be to see if you can metabolize Tamoxifen because the test may only be covered for certain drugs. Yes, I do think your oncologist could offer better customer service and check for you. I hadn't heard of anything race related so I googled and get conflicting data on that. I didn't see any real alarm bells for any race, but google that yourself to see what you find. I did read only 5% of the general population is a CYP2D6 poor metabolizer, but again google and see what you find. You also don't want to be an ultrarapid metabolizer. You want to be a normal metabolizer. Don't we all just want to be normal? Normal is underrated. 🙂 Best of luck to you.

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I finally got the CYP2D6 test done and I’m intermediate! Can’t believe I keep ending up in the grey zone! Waiting to talk to 2 oncologists for their opinions.

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Zebra | @californiazebra | Aug 8, 2023
In reply to @brighterdays "I finally got the CYP2D6 test done and I’m intermediate! Can’t believe I keep ending up..." + (show)
@brighterdays

I finally got the CYP2D6 test done and I’m intermediate! Can’t believe I keep ending up in the grey zone! Waiting to talk to 2 oncologists for their opinions.

Jump to this post

Hi @brighterdays

Glad you at least have your CYP2D6 results. I just found this FDA table updated in 2022 regarding metabolizer status and the impact it has on certain drugs.
https://www.fda.gov/medical-devices/precision-medicine/table-pharmacogenetic-associations
It seems intermediate should be better than poor, but we'll see what your oncologists say. Please let us know. Also, some meds use more than one enzyme to metabolize so maybe your enzymes will be up for a little teamwork! For the meds I can take, often a lower dose is best for me. I hope they have something positive to tell you about intermediate. 🙂

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