CYP-2D6 Tamoxifen

those labial are folks that will respond to to mocks Finn

^ I can get "Tamoxifen" from "to mocks Finn" but don't know what you were trying to say that's been turned into "those labial are folks." Would you clarify? Thanks.

I asked my first oncologist for this test for the same reason that you're stating. I later asked my second MO as well, neither one of them would order the test. There are some oncologists who do order the test apparently but I think this is rather a newish trend and most doctors do not have a standard of care or recommendations for that yet.

As I understand it, how you metabolize drugs via the CYP2D6 enzyme is a genetic characteristic of you. And whether a particular ILC will be de novo resistant to tamoxifen is a genomic characteristic of the cancer cells. So it's two separate issues. Both are worth pursuing in my opinion.

As for doctors refusing to order the test, bleep em. Just order the stupid test. It’s not your life on he line, Doc.

I was tested by Kailos Genetics... It showed I'm an Ultra Rapid Metabolizer, so will do well on metabolizing Tamox. I highly suggest Kailos Complete RX... we found out we have some alleles that have a huge effect on BC.

Rah, in response to your comment "What blows my mind is that we are all dependent upon a drug where we have no true indicator of efficacy. I still wonder why blood plasma concentration levels of tamoxifen metabolites are not measured after you reach full dosing levels" it's not quite the same but when I was dx. five years ago I did neoadjuvant femara rather than neoadjuvant chemo. My tumor was re-biopsied after one month to check for response (which as very strong) and I then stayed on it until surgery 7 months later. I didn't have pCR but a great deal of the tumor and nodal metastasis was dead and the growth rate of the remainder was only 1%.

I have found that information extremely helpful the past five years and, while I realize that any cancer can develop resistance, I do at least have a strong indication that endocrine therapy has been/is valuable for me.

When I started on that protocol I learned that it's in common usage elsewhere in the world but nowhere near as frequently used in the US. At the time, I figured that in five years it would be widespread here as well and I'm really puzzled by the fact that it's still the exception rather than the rule. I'm really sorry that more women don't have the opportunity to gain similar insight into the efficacy of their treatment. I suspect it all feels pretty iffy and nebulous without that confirmation.

If your MO won’t order the test, is there a way to do it on your own?

But what if your oncologist won't? Mine feels it's not a good test, but I'm asking if there is a way I can get it done on my own, out of my own pocket?

1) I got my genetics tested without asking any doctor. I simply went to Kailos, purchased the Complete RX package, told them who my primary care doctor was and paid the cost on my CC. Then, I called my primary's office and INFORMED them that I'm having this test done, out of pocket and they need to sign the form for it. You don't ask.. you tell. This is your body and your money. They will go along with it, even if they think it's stupid as long as they aren't being asked to submit to insurance.

2) on the Endoxifen, yes, there are labs in the nation that will test independently. Just do a google search for Endoxifen blood test and call the lab directly.

I do not understand why ladies don't just take the bulls by the horn and do the work themselves. If I waited for another human to decide I deserved something, I'd still be waiting.. or dead (since I had to demand to get an US because the mammo didn't see my lump and no one believed me). Be active in your care, not passive. Do what is best for you and TELL your docs what you need, don't simply ask and wait for them to grant things like you are a child and they are a parent.

Perhaps if the testing company simply requires a physician's order, your PCP or NP could sign?

Hey Lisey...why wouldn't your oncologist order the genetic testing? You mean like for BRCA? I thought that was pretty standard??

A lot of people are on insurance plans that are restrictive about additional testing and require referrals for EVERYTHING. Many of those plans also require the patient to stay within a network. And not everyone has the financial wherewithal to pay for extra testing out of pocket. To imply that these people just aren't being proactive enough is rather insensitive.

Lisey, again, my question wasn’t how to order my oncologist to sign a form but about non-signature options. If you don’t know if that’s an option, you can say that. Or if you know it is not an option, you can say that instead. Or if you know that it IS an option, you can say which website doesn’t ask for a doctor’s signature. I just wanted the resource for my information. I may or may not ever feel like that’s something I want to pursue. What I am NOT asking is your opinion about how to manage my care or what sort of relationship I should have with my oncologist

Hi Mac5, you may want to post your question as a new thread, as this is only about the CYP2d6 test.

Ok Wander, I feel I did answer all those items, but if you choose to disregard my answers then it's up to you. Bottom line is this:

1) You can order the Tamoxifen test directly from Kailos Genetics or another certified lab. I personally recommend the Complete RX test as it does more than just tamoxifen and is super beneficial. Insurance is not billed and has no knowledge of any of this.

2) You pay with a credit card and tell them your doctor's contact info - which doesn't have to be your oncologist, it can be any doctor, even a holistic one.

3) you then inform that doctor you are ordering a test, paid out of pocket and just need them to sign for it. You don't ask permission, you inform them that is what you want and since it's not being billed to insurance, they need to do it.

4) You then decide if you want to request an endoxifen test from your doctor.. and if your doctor 'WONT', you then decide to bypass them and do the testing yourself through numerous labs across the country that test for Endoxifen.

Correct Wander, you do need 'a' doctor to sign an acknowledgement that they agree to receive the results - but you don't need a doctor to order the test. It does NOT have to be your oncologist though, it can be any doctor, including your GCP, your holistic doc. Honestly, all docs will sign for it if you push them - given it costs them/insurance nothing and is simply an extra test you want, so this just doesn't seem like an issue at all.

Wanderweg my MO specifically cautioned me about genomic testing related to accuracy of their testing protocols. She wanted me to use a very specific provider that she felt had more stringent processing requirements. It is very easy to get cross contamination if lab protocols are not followed, potentially giving someone a less accurate result. Interestingly enough, my GP, who read over a copy of my test results, did not add them to her file.