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Has Anyone On Tamoxifen Had The CYP2D6 Metabolizer Test?

A MyBCTeam Member asked a question πŸ’­
Lansing, MI

I've been taking tamoxifen for about four months and having hot flashes as my primary side effect. My doctor doesn't think that the CYP2D6 test--a genetic test that measures how well one metabolizes tamoxifen into endoxifen, the active form of the drug--is necessary. Any advice? Has anyone had the test? It looks like it was popular about five years ago and then fell out of favor, so I wonder how accurate it is.

June 30, 2016
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A MyBCTeam Member

If doctors don't want to order a test it's usually because it's too expensive and insurance wont cover it.. that's my experience. they should tell you the truth and give u the option to pay yourself.. or tell the insurance co IT IS NECESSARY.. but of course they probably have stock in insurance co... i think they just dont want to take the time to justify tests... exasperating!

July 4, 2016 (edited)
A MyBCTeam Member

Kate, I, my late father and my daughter all had 23andme done. I downloaded my raw data into Prometheus and Livewello. I am familiar with what you are talking about. I am an extensive metabolizer of CYP2D6 enzymes due to the type genotype I have for a specific variant. I do not know if insurance today will pay for this test. If not, it is because of the cost involved. I am going to do some more research and am going to ask my oncologist about it at my next appointment. If I remember correctly, some women who because of a variant of CYP2D6 do not metabolize Tamoxifen well, do not benefit from the drug. I am post menopausal so am on an aromatase inhibitor. I was first on the generic arimidex and had horrid side effects. I just started another AI and am taking the brand and not the generic-Aromasin. It is very expensive but if it works, it is worth it. So far I am tolerating it much better than the previous generic. I also was told that side effects or lack of them was no indicator of whether the drug was working. Since you are pre-menopausal I would think that your hot flashes would indicate that estrogen is being lessened. I would encourage you to continue with it if at all possible as it has been around a good while and has been proven to keep estrogen dependent cancer at bay. If insurance will pay for the test, insist that your doctor order it! I would not think that it is very expensive. I just saw your other post re back pain after changing tamoxifen brands. Hope by now you have gotten some help with that but I will tell you that I have found several times that the company making the drug can make a big difference is side effects, etc. This is why I am now taking the much more expensive brand Aromasin. Best of luck to you-you have a great attitude!

July 1, 2016
A MyBCTeam Member

My onco told me that side effects are no indictaion of the effectiveness of a drug.

June 30, 2016
A MyBCTeam Member

Never heard of the test...but now am worried because I have hardly had hot flashes while taking it. Going to message my onc. right now!!!

June 30, 2016
A MyBCTeam Member

I have not heard of the test. Accuracy may be the reason they stopped favoring the test. It's also possible it's too expensive that insurance will not pay or that most women metabolize it well but cannot deal with the side effects, therefore realy eliminating the desire to have such test done.

When I asked my oncologist how we can tell the drug was working he said that the hot flashes were a good way to determine that the drug was working. I was prescribed tomoxifen, as I was mensturating prior to chemotherapy with ER/PR+ & Her2 - breast cancer.

I had hot flashes and night sweats every day I was on Tomoxifen. I tolerated them well enough to continue taking it.

June 30, 2016

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