Most Drs only order CYP2D6 testing if the patient asks
Take a look at this poster from the San Antonio Breast Cancer symposium. http://bit.ly/8Kz7ym 90% of oncologists are aware of CYP testing but most only order if the patient asks. If you are taking tamoxifen, ask your physician about the test!
Comments
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Is that the test to see if you metabolize tamoxifen? My onc never mentioned it to me, but I heard about it from another young survivor. They did the test for me, but it took them 20 minutes to find the test coding because they had never done one at my oncs before. I guess it might be because the majority of women are post-menopausal and taking AI's instead. I'm glad I took it because I'm a moderate metabolizer and now need to avoid a nice list of drugs that would render tamox useless.
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Yes, this is the test to see if you metabolize tamoxifen. Ten percent of patients are poor metabolizers and will not respond.
Interestingly, a recent JAMA study showed that tamoxifen is just as effective as AIs if patients are normal metabolizers of the drug. http://jama.ama-assn.org/cgi/content/abstract/302/13/1429.Only 16% of oncologists routinely discuss testing with patients, 57% will order IF requested by the patient.
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Bump
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Kashcraft - my onc. ordered it without my asking - I am in the same city as you, so maybe I'm lucky?!
It came back "weird" not exactly a poor metabolizer, but not great. My blood work has shown that I am not in chemopause, but menopause, so it is femara for me. One month in, so far no big deal (yes hot flashes occassionally, but it has been so cold it has not been an issue!).
I really appreciate your input - thanks for posting and helping us out!
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I asked my Med-Onc about this test and he acted like it was something he had heard of but had not done before, saying he would check into me getting one.
I've only been using Tamox. for a month. I kind of wanted the test BEFORE even taking it, but I wasn't sure if it was supposed to given while the actual Tamox was in your body. Does anyone know if that even matters?
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Hi Elimar -- the CYP2D6 genetic test is not affected by any drugs you are taking. It is a genetic test (of blood sample or cheek scraping), to see what kind of genes for making the enzyme CYP2D6 you were born with.
[There is a test to measure how much tamoxifen you are metabolizing into endoxifen (a person takes tamoxifen, and the person's CYP2D6 enzyme needs to metabolize it into the active form, endoxifen), but this is a research test only, not a standard lab test. I think it is only done in research studies. You would HAVE to be taking tamoxifen for this test to be done.]
EDIT to add: My onc immediately started me on tamoxifen at my first visit to her in May 2007, but ordered the CYP2D6 at the same time as well. Thank God she did -- she's very cutting-edge -- because a month later the test result showed I had two "null" alleles (form of a gene) for CYP2D6 and was a non-metabolizer. Since I was in menopause, she then switched me to Aromasin (gave me a free sample of Aromasin for the first month, since I'd bought the Tamoxifen -- she's cutting-edge AND sweet!)
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My medonc put me on Femara first. I was on it for about five months when I found out about an estradiol test to see how much estrogen my body was building. I am postmenopausal. Medonc ran the test and said my estrogen level was to high so put me on Tamoxefin. I then asked for the metabolizer test before I started taking the tamoxefin. Come back I was an extensive metabolizer. I agm in the process of fighting my insurance company to pay for this ($1,1000.00). They denied it the first time around due to office not getting preapproval. Make sure your insurance will pay for it before having it done. It's an expensive test.
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We offer a patient safeguard program at Genelex that limits out of pocket cost to $295 regardless of insurance coverage. We have seen insurance cover the testing over 80% of the time. We do sometimes have to appeal first, but we appeal every denial we can. One reason we see denials is because a patient's insurance doesn't cover genetic testing at all which we cannot appeal- best to check this first. Preauthorization is also advisable if the $295 is still a big issue.
For patients with high copays or without insurance coverage for testing who have financial need, we have a patient assistance fund that will pay this for them. You can help grow this fund by joining our facebook group - http://apps.facebook.com/causes/380509/23510535?m=e56504ed $1 is added to the fund for each member that joins.
ajlive- Here are resources for appealing denial of testing coverage - http://www.tamoxitest.com/insurance.html. May I ask what lab you used that bills $1100 for this test?
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@ aprilgirl1 - I'm glad your ocnologist is in the proactive percentage - that's great!
I know Dr Rinn and Ellis at Swedish refer testing a lot. It is unfortunate that more Drs don't. -
It's Dr. Ellis, but at SCCA - I have many friends that go to Dr. Rinn - way too many friends in their 40's with cancer in our emerald city.
I really a happy with SCCA, so will stay there, but Swedish is supposed to be a great cancer center too.
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ajlive, the mix of information has confused me. Are you saying the estradiol test is different from the CYP2D6 or is it the same one? I didn't realize it was that costly.
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Oh, oh, oh...I see. I had the estradiol test from GYN doc in 2008 then, as a menopause check like you did. I will call ahead before my Med-Onc appt. in Jan. and ask them to get a pre-determination on the CYP2D6 just to be safe. I do want it. It would be pointless to keep on the Tamox. and not really know if you can make use of it.
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At this latest breast cancer conference (San Antonio) a presentation was made to the 9,000 attendees reporting a restrospective study of over 3000 women and their cyp2D6 metabolism. There was no evidence that the 3 groups based on metabolism were any different in terms of outcome for women receiving tamoxifen. The speaker concluded the study had some flaws, that this is not the final word, and we should wait for several large prospective studies. I cannot find a link to the presentation, it was just last week.
If you ask your oncologist for this test, there is no way she/he can know what to do with the result, it simply has not been studied adequately. I will continue on tamoxifen without knowing my cyp2D6 until a proper study is reported.It can always be tested later.
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This is the study - http://www.medpagetoday.com/HematologyOncology/BreastCancer/16306. The presentation said there was no difference in overall survival between groups with different CYP2D6 genetics. However, there were significant differences in event-free survival. In my opinion, even if it doesn't kill you avoiding a breast cancer recurrence with optimized therapy still makes sense.
Recurrence rates at nine-years' follow-up were:
- 14.9% among extensive metabolizers
- 20.9% among those with heterogeneous intermediate/extensive response alleles
- 29.0% among poor metabolizers
After full adjustment for tumor characteristics, the genetic variant-associated time to recurrence risk compared with CYP2D6 extensive metabolism was 90% worse for poor metabolizers (P=0.02) and 40% worse for the intermediate group (P=0.03).
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Dec 13, 2009 03:56 pm Kashcraft wrote:
We offer a patient safeguard program at Genelex that limits out of pocket cost to $295 regardless of insurance coverage. We have seen insurance cover the testing over 80% of the time. We do sometimes have to appeal first, but we appeal every denial we can. One reason we see denials is because a patient's insurance doesn't cover genetic testing at all which we cannot appeal- best to check this first. Preauthorization is also advisable if the $295 is still a big issue.
I paid the $295 up front. Then Genelex billed my insurance for the test. My insurance denied it. Today I get a BILL FROM GENELEX FOR $932.15. What's up with that? Granted, maybe when I call on Monday they'll say, oops, our bad, you don't owe another 900 bucks. They had better.
BUT, why not get it right the first time? It's upsetting to get huge bills like this, and then you have to spend time and effort to get it straightened out. I was questioning my memory of what I was told over the phone when I was talking to Genelex about having the test, so I'm really glad Kashcraft documented this here. Some people might just go ahead and pay the bill without protesting, and pay way more than they're obligated to. That makes me kind of mad.
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WOW! these presentations are so ironic to me - no significant difference in overall survival but SIGNIFICANT in event free survival which is what we are all interested in.
I am happy my onc. ordered this and I think my insurance co. paid for the test.
Either way, chemo put me into menopause not chemopause, so it is femara for me at this point.
Rabbit fan - hope that bill was just a glitch...I really think it was - or it is just a preliminary rejection that will be approved upon appeal. I find insurance issues so annoying. As if having cancer is not a big enough headache.
Happy New Year's to all!
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I ordered the test from Genelex on Dec 16th. I was charged $298.00.
Im in Canada, so the test is not available,had to order it in Seattle. Does anyone know how long it takes for the results? The woman told me that they can email your results as soon as they have them + mail them to you.
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Rabbitfan - you will receive a statement from Genelex automatically with the correct adjustments. Even if someone accidentally paid this, it would be immediately refunded. The consultant should have explained this to you. I apologize that they did not.
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lexislove - results take 10 business days from receipt of samples.
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Kashcraft, my insurance did cover the genetic testing of the Oncotype Dx, but I was just told it would not cover CYP2D6. Have you successfully appealed in instances like this? My Med-Onc would be sending my blood out to Mayo Clinic to have the test done. How can I get the $295 option (or better?)
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I asked my oncologist for this test, and she told me it was not indicated for cases of DCIS! I don't see why it makes a difference. Why on earth should you take Tamoxifen if you are a poor metabolizer, and it won't work for you?
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This whole thread gives me a really odd feeling.
It started out innocently enough with someone telling us we might need to ask our doctors for CYP2D6 testing if we're taking tamoxifen, because most doctors will not order the test on their own. I assumed the original post was from a BCO "sister" who was taking tamoxifen and had run into a problem with the testing. She sounded especially well-informed about tamoxifen metabolism, the CYP2D6 enzyme, and pharmacology in general. That was great -- heaven knows we can always use good adivice and informed opinions around here.
But I was not paying attention.
As I read through the rest of the posts on the thread, it began to sound less like a rolicking discussion of the pro's and con's of tamoxifen and the virtues of CYP2D6 testing, and more like promotion of the testing itself. Then I noticed the word "Genelex" in Kashcraft's signature line. So, I went back and read her profile.
Turns out (am I the last person to notice this?), ... "Genelex" is the company that does the genetic testing for CYP2D6. They offer a test called the "TamoxiTest", or "Tamoxifen Resistance DNA Test (CYP 2D6)". It's the same test Kashcraft has been telling us about, and urging us to ask our doctors about. She has posted on the BCO boards 39 times, and every single post has been promoting or explaining the CYP2D6 genetic test her company runs.
Now, Kashcraft has been upfront about her relationship with Genelex. She said in her profile that she is a molecular biologist for the company. (At least she's not in Marketing!) And, I think the information she has provided in this thread is very useful to those women considering, or already taking, tamoxifen. I have no doubt at all that CYP2D6 testing will, before long, become standard procedure for women going on tamoxifen. IMHO, it's medically negligent to continue to deny patients a test that can show whether the life-saving drug they are taking is even pharmacologically active.
OTOH, when does Kashcraft's participation in these discussions (via her 39 posts) become commercial advertising, rather than community education? When she repeatedly tells us how important it is to be tested for CYP2D6, and she urges us to ask our doctors about the test, why are those statements not considered "promotional" (on behalf of the company she represents), and therefore in violation of the BCO Community Rules?
These are the relevant "Community Rules":
8. You agree not to advertise or promote any goods or services in the Discussion Boards or Chat Rooms...
9. You agree not to solicit anyone to buy or sell products or services ...
If it were anyone else offering us all this helpful advice (and it really has been helpful, I think), I would have no qualms at all. But, Kashcraft isn't "anyone else" -- she is someone whose employer will benefit financially, if she is able to spread the word among BC patients about CYP2D6 testing, and increase the demand for the test. She has even quoted the price the company charges for the test and explained how they handle insurance coverage. In a post in another thread, she provided the CPT codes needed for reimbursement and explained how to obtain preauthorization for the test.
<sigh> I am not the Post Police. Really, I am not. I just struggle with ethical questions like this. What she has given us is very useful, and probably could not have been obtained anywhere else -- at least, not this easily.
But... to play devil's advocate: Should someone representing AstraZeneca be allowed to start a thread in the Chemo forum to promote a new chemo drug the company has developed and to urge us to ask our oncologists about it? Should a technical rep from 3M be able to register as a BCO member and then use his/her access to tout a new surgical adhesive the company thinks is far superior to others our surgeons are more familiar with? How about someone from Medtronic who starts a thread urging us to ask our doctors about a new "pain pump" the company makes that Medtronic is certain will relieve our post-surgical pain?
These discussion boards are supposed to be free of commercial content; yet, the rest of the BCO website is rife with pop-up advertisements that are not distinguished in any way from the "educational" content on the site. So, does this thread belong here, or not? Where's the line between posts that are chock full of useful information, and posts that will advance the sales of a product or service, thereby increasing the profits of a company the BCO member represents?
Just asking. (I hate when I do that.)
otter
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If there were practical alternatives, I would be against it. But there are not. If you are fortunate enough to have a Dr. that will order the test (blood sample to be sent to Mayo) - Great, you are in luck. But most docs still won't order it even if a patient asks. What alternative do most women have? Take tamox for 5 years and just hope its doing some good?
Also, most insurance won't pay. I have read on these boards that Mayo charges about $900. The $300 Genelex charges makes the test feasible for many w/o insurance.
Plus, it is critical that Her2+ women be tested since tamox can stimulate the growth of Her2+ cancer in the absence of adequate endoxifen levels.
Rules have their place, but tamox can have serious and rarely even fatal side effects. It seems wrong to not present women with an option that spares them the risk of tamox if there is no possibility of benefit.
And no, I do not work for Genelex or hold stock in Genelex or profit from the test in any way.
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otter, It does seem to go against the rules that the moderators have set up. However, I'm still hoping to hear back from Kashcraft on how I can keep the out-of-pocket to a minimum.
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Otter, I had the same uneasy feelings as you.
Orange, I'm not clear why you say there are no alternatives. My CYP2D6 testing was done in 2007 through ARUP laboratories -- their current price for the test is $375. My insurance (UHC) covered it. Roche Laboratories has offered a CYP2D6 test since 2005.
Also -- isn't the Mayo test a measure of blood levels of endoxifen? That is, an actual measure of how much tamoxifen is being metabolized into the protective hormone endoxifen?
The Genelex, ARUP and Roche tests are to see what "versions" a person has of the gene to make the enzyme CYP2D6. Based on the genes, you are then classified as a poor, intermediate or high metabolizer.
But the Mayo test actually measures the metabolizing taking place.
(Anybody, please correct me if I am wrong!)
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All this is incredibly interesting as the CYP2D6 is fairly new here in Australia and I was the first in my region to have it done in June of 2009. I had my Oncologists referral and although I had to change the pathologists, I was quoted Australian Dollars $65 and then when the bloods were taken I was told it was "free" during the month of June for "promotion" purposes. It would be interesting to see how much it is now. My Oncotype DX test however cost me "out of pocket" $5,800. No rebates!!!!
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If the other providers of CYP2D6 testing provide testing w/o a doctor's order, I stand corrected. Ann - do you know if they do? As far as I know Mayo does not.
In 2007 Mayo was offering a genetic test - I had mine done there. I understand that recently they started offering endoxifen blood level testing as well.
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Oh, orange1, I'm sorry -- I didn't realize you meant without a doctor's order (didn't read carefully enough) -- I know that the ARUP test is a blood test, and even if ARUP would test without a doctor's order, it seems like it would be hard to get blood drawn without a doctor's order. I see that the Genelex test is a cheek-swab kit, much easier to do on one's own.
But I think it's an exaggeration to say "most" doctors won't order the test -- Kashcraft herself said 16% of oncologists bring the test up with their patients, and another 57% will order it if the patient asks. Of course, I think it's terrible that 27% of oncologists would refuse to order it (what I understood Kashcraft to be saying) -- but that's not "most."
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Ann - You are right. Apparently most docs (at least in the US) will order it if asked. Thanks for the correction. However I have corresponded with several people from Canada whose docs are refusing and only occasionally give in after much badgering/pleading and order the test. In most cases that I know of, the Canadians are paying for the test themselves.
Otter - I see your point about not allowing Novartis or other companies to post advertising. But in my opinion, its more important spread awareness and understanding of the test so that docs will start ordering routinely even when not asked, and of course to make it available to women whose docs won't order it. Once there is critical mass and testing becomes routine then I would agree that Kashcraft's posts are inappropriate.
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Is CYP2D6 testing done with sample blood or a cheek swap? Or can be done either way? I'm confused. I just want to see what kind of metabolizer I am, and hopefully insurance will cover the testing. I have UHC.
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