Last month I had to discontinue the Aromitase Inhibitors b/c of side effects. I applied to the Ministry of Health (Ontario) for coverage of the CYP2D6 genotype testing to see if I can metabolize Tamoxifen. The funding was denied as an insured service because they say the testing is experimental or for researach or survey purposes. This denial is subject to appeal, however, I must provide information to the Ministry that demonstrates that this is a reasonable test and that it is not experimental. Can anyone direct me to peer reviewed sites or papers that I can submit to the Ministry of Health? Thank you all so much.
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BlindedBySc… Joined: Dec 2006 Posts: 529 |
May 13, 2008 05:55 pm
BlindedByScience wrote:
Mayo Clinic offers the test and published a good summary article in their newsletter. This article is supported by references to published work: |
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EMSG1 Joined: Apr 2007 Posts: 14 |
May 14, 2008 08:13 pm
EMSG1 wrote:
Thank you BlindedByScience. I printed the Mayo's Communique. I was in contact with the Mayo and was informed by them that the CYP2D6 test is not universally accepted. However, the position of the clinicians who care for breast cancer patients at Mayo Clinic Rochester is that in certain circumstances, such as postmenopausal women with estrogen receptor positive early stage breast cancer, that the CYP2D6 test can provide useful information. This is based on their data that CYP2D6 poor metabolizers do less well than those who are not poor metabolizers. Since they published this data, additional supporting data has been published from Germany and Japan. The US FDA is considering a change in the label that takes CYP2D6 testing into account but it will likely be several months before this occurs. In Ontario, Canada, where I am, the test is considered "experimental" and unless I can demonstrate its' valididty, the costs of the test will not be covered under our health insurance. I had the testing today and I will pay for it myself ($600.) however, I want to appeal the decision by the Ministry of Health because women should be able to make informed decisions about their health and if one is not a CYP2D6 metabolizer, then one needs to think about what other options are available to prevent breast cancer recurrence. Any and all information that all you informed correspondents out there can share with me will be appreciated. |
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CherylRubie… Joined: Jul 2006 Posts: 158 |
May 14, 2008 08:30 pm
CherylRubie wrote:
Ah, what's a girl to do? Somebody at Harvard M.S. just did a model which suggests that there MAY not be a difference between AIs and Tamox. if CYP2D6 metabolism is taken into account. So should I go back on Tamox? Probably not. Cheryl aka "wild type" (2 wild type alleles, extensive metabolizer of tamoxifen) Dx 2006, IDC, <1cm, Stage I, Grade 1, 0/8 nodes, ER+/PR+, HER2- |
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Kimber Joined: Nov 2007 Posts: 213 |
May 14, 2008 08:39 pm
Kimber wrote:
Isn't the test only for post-menopausal women? Dx 1/15/2008, LCIS, 6cm+, Stage 0, / nodes, ER+/PR+ |
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NancyT19 Joined: Sep 2007 Posts: 10 |
May 14, 2008 09:00 pm
NancyT19 wrote:
Technically speaking the answer is "no," the test is not just for post-menopausal women, as menopause has nothing to do with your CYP2D6 genotype. However, the test is only performed on post menopausal women as a means of determining whether tamoxifen is an acceptable alternative to an AI. This is because if you are premenopausal, and estrogen receptor positive, it is either tamoxifen or nothing ... the AIs are not for pre-menopausal women. Even if a pre-menopausal woman has a less favorable CPY2D6 profile than is desirable, if there's no other drug available, the thought is, why test because tamoxifen is still better than the alternative, which is nothing. |
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MAMHOP Joined: Aug 2007 Posts: 618 |
May 14, 2008 09:27 pm
MAMHOP wrote:
All of that is true, but if I knew tamoxifen wasn't working, I might consider having my ovaries removed and go on an AI -- why isn't that worth considering? I'd rather not, but I don't want a recurrence either. I'll feel even worse if a year from now they decide the test isn't experimental, they give it to me and I find out the drug I 've been taking hasn't been working. Or maybe it has, who knows? Don't we have enough to worry about? M. |
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laynel57 Joined: Jul 2007 Posts: 347 |
May 15, 2008 08:16 am
laynel57 wrote:
I'm pre-menopausal and when I asked my onc about the CYP2D6 test he recommended against it for me for 2 reasons: the first is that I AM pre-menopausal and it is the only option available to me (and he is not willing to recommend removal of healthy ovaries or ovarian suppression for me). The second is that even if I am a poor metabolizer, "they" simply don't know what level of endoxifen (what tamoxifen metabolizes into in one's system) is theraputic -- they don't know if one needs a little or a lot. They're working on finding out, but they don't know. Additionally, there are other metabolization pathways for tamoxifen as well. I'm a VERY aggressive medical consumer and his explanation made sense to me. He is also very deeply embedded in the breast cancer research community. I have few SEs (although my endometrium seems to be thickening slightly in a recent tvu/s), so I may or may not be a good metabolizer. But as of now, until something breaks on the research front, something better comes along, or I get a very bad side effect that I can't overcome, I'm sticking with tamox. Good luck, ladies! Layne "Hit it with a sledgehammer until it submits or dies ...."
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Nico1012 Joined: Apr 2008 Posts: 213 |
May 19, 2008 12:04 pm
Nico1012 wrote:
Bump. |
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MAMHOP Joined: Aug 2007 Posts: 618 |
May 19, 2008 03:40 pm
MAMHOP wrote:
Layne, My oncologist said pretty much the same as yours -- I am treated at a large cancer center in Boston, so I too am staying with tamoxien for now. M. |
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