CYP2D6 ability to metabolize tamoxifen and recurrence
Comments
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There was a study that correlated hot flashes with lower risk of recurrence: Tamoxifen, hot flashes and recurrence in breast cancer
But another one that showed Hot flashes are not predictive for serum concentrations of tamoxifen and its metabolites
I don't think we have proof either way.
I have side effects that I consider mild because they are very manageable and I have always wondered if that means the tamoxifen isn't working as well as it should. That is one reason for my interest in CYP2D6 testing.
I take magnesium for the constipation and leg cramps. Exercise keeps the joint pain and stiffness at bay. Ashwagandha and melatonin for the insomnia (also finally getting my sleep apnea treated has helped). The ashwagandha I actually take for my sky high cortisol but I take it at bedtime and it does help me sleep. I have mild hot flashes but they do seem to be fewer since I started the ashwagandha. Makes me a little nervous that anything that reduces the hot flashes might reduce tamoxifen effectiveness, but I don't have any other options for the cortisol so I'm taking the risk. I use rogaine for the hair loss and my hair has grown back better than it was before I started tamoxifen. I try to avoid chemicals but I can't walk around bald and I found a brand that has very few ingredients with an EWG rating of 2 (a generic CVS formula). So basically with this routine I barely even notice that I'm taking tamoxifen.
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solfe - thans for the links. The thing about the second study that found no effect was that the sample size was quite small. Did you notice that in that sample 85% of the patients were ER+ but 75% were PR-. Those stats don't look typical/representative of the population of woman on tamoxifen, do you think?
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jojo - What they are saying is that there was no correlation between hot flashes and the level of the drug and metabolites in that study. The makeup of the tumor is irrelevant in that respect. Most women who take tamoxifen will experience some level of hot flashes, even if they don't have breast cancer at all. It's a systemic thing not a cancer thing. They weren't looking at risk of recurrence as a result. Neither study is the type that decides the issue which is why I said we don't have proof either way. I would rather be having hot flashes than not having them, however! That's why they don't bother me. I embrace them as a sign the tamoxifen is working.
There are some others that show a possible connection between CYP2D6 genotype and hot flashes but nothing that proves exactly what that means.
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Jojo ~ My initial response to the Tamoxifen was exceptional as I had dramatic positive results after just a few months. I had one micro tumor and one small lymph node in my breast that were reduced in size by about half. The Tamoxifen along with the Zometa helped to "fill in" some of the holes in my spine and pelvis that the cancer had caused. The bone damage is still pretty extensive but those little repairs were nice to see. Being Stage IV, my disease will always be "active". I have labs, CTs and Nuclear Bone Scans every 3-4 months to monitor changes. My MO's goal is to keep me stable for as long as possible. I have had some bone lesions increase in size; nothing bad enough to considered progression. My tumor and original lymph node have stayed stable in size. The node on my collarbone popped up when the Tamoxifen failed after 2 years. I've been on Femara a little over one year - so far so good.
Solfeo ~ I hate hot flashes! When I was on the Tamoxifen I was getting up several times a night to change clothes and-bedding. Ugh. I think it was a year before I learned about Peridin-C. All natural and recommended by the National Cancer Institute. It made a big difference! Bonus....the mega doses of C are supposed inhibit cancer cells and it is really good for your hair. The hot flashes aren't as bad on Femara but I still take the Peridin-C.
Peridin-C on Amazon.com - best price and good reviews
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Hi Shepkitty - yeah, I never had night sweats and as I said my hot flashes are mostly mild, so easy for me to say that I embrace them! But that's what I mean about wondering if that might indicate a CYP2D6 problem, or if not that, maybe my levels aren't high enough for some other reason (I've lost a lot of weight, over 100 lbs, but I still have another 40 lbs to go.). We know you are a normal metabolizer and you had bad hot flashes and night sweats, so I could be intermediate, or I might just need more because I'm overweight. I think I'm going to ask for an endoxifen test too to see if a higher dose of tamoxifen might benefit me if CYP2D6 is normal. Then I'll come back and complain about the night sweats if I get them!
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Just wanted to add my anecdotal evidence. I am an ultra rapid metabolizer and hot flashes, which were always bad for me on Femara, were even worse with tamoxifen. I did not have a genetic test but had a test to see how I metabolized dextromethorphan as in this link:
http://www.medicaldaily.com/how-breast-cancer-pati...
It is easier to detect dextromethorphan than it is to detect endoxifen according to this.
As a result of testing (as part of a study) I am only taking 10 mg of tamoxifen.
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Hi Shepkitty,
So glad you are stable, and actually doing better in some ways than you were 3 years ago. Sounds like your medical team is working everything to your advantage, and you are certainly on top of all the research! BTW, did you read the study from a few months ago that indicated dried plums are protective against radiation damage? http://medicalxpress.com/news/2016-02-dried-plums-... (I was interested because my son wants to be an astronaut---which involves a lot of radiation exposure)
You raise a good point, what do you do with the information? Say you test high on CYP1B1 and low on COMT, putting you at high risk for ovarian cancer and higher risk for breast cancer. Is that equivalent to being positive for a BRCA 1 or 2 mutation? Would it warrant higher surveillance, or prophylactic treatment?
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Just a pdf posting test. Nevermind
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I got all the info from Genelex and I put it online for y'all since we can't link directly to PDFS.
http://www.bcfileshare.org/genelex
Included is the full price list, which also contains all of the CPT codes necessary for getting pre-authorization from your insurance company. Use as a guideline only because prices are subject to change. Call for updated list when you are ready to test. It's not so expensive that most people couldn't come up with the money if they really wanted to. The Polypharmacy Test, which includes CYP 2D6, 2C9, 3A4, 3A5 and 2C19, is $1795 billed to your insurance, or $695 patient cash price if insurance won't pay.
My insurance company did require pre-certification for any genetic testing. This requires a letter of medical necessity from your doctor. Also included at the above link is Genelex's pre-certification form. You provide this form to Genelex after you get pre-auth from insurance (your doctor would use your insurance company's form for obtaining the actual approval). I'm including it because it gives tips for your doctor on the kind of information that should be included in the letter of medical necessity.
Also included is the Genelex Patient Billing Handout. This is available on the public part of their website, but I put it with the other stuff for convenience. It explains their billing policy. They will try to appeal any insurance denial before they bill you the cash price, and they will never bill you for any amount above your insurance company's reimbursement if they do pay.
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Heidihill ~ Interesting ....I wonder what a genetic test would show? How relevant to your "real life" experience would it be? My PCP is a DO (Doctor of Osteopathic Medicine). His approach to treatment is to examine all the science based information, compare that information to the physical body and then mesh all the facts for the best course of action. He's the one who ordered all my testing. He's an awesome mix of traditional and holistic medicine. My medical "consigliere"
Fallleaves ~ I wish I knew of that study when I was doing all my heavy rads! I love dried plums, apricots and dates. I buy the ones that are preservative free. (sulfa allergy) I've been eating them as an evening snack for a couple years now to cushion my stomach from meds and to keep my guts cooperative. Very good for potassium too.
How to use all the genetic testing? The more I learn, the more befuddled I become. I also had the GeneID Preventest Molecular Report done the same time as the Genelex test. GeneID thoroughly examines 31 different genes specific to cancer. "This non-invasive test helps the patient and clinician determine the level of risk for some of the most common solid tumor cancers including Breast, Ovarian, Endometrial, Pancreas, Prostate, Skin, Stomach and ColoRectal Cancers." And my results.......no mutations shown, I am 0 risk. Most cancers aren't genetic but sporadic and are caused by environmental factors. How useful is the GeneID panel? I don't know. I do know that my MO has no sense of humor.......totally not amused when I proudly showed him the test and told him I didn't have cancer and was going home. I thought it was funny! Still do.
Higher surveillance with any cancer dx is logical to me. Surgical procedures in the hopes to possibly prevent a new cancer or recurrence? So many pros and cons with so much conflicting information on the end results. Such a personal decision. We just need to be comfortable with the decisions we make for ourselves and hope for the best.
I'm just learning as I go along and hoping I get it right. This is the closest to Genetics for Dummies that I have found so far:
National Institutes of Health & National Library of Medicine
Solfeo ~ Good Job!!!
(edited to fix typo)
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Shepkitty, that cracks me up thinking of you showing your doctor the GeneID test to show you obviously couldn't have cancer! Who could argue with 0 risk?
You're in luck with the dried plums, they don't just prevent radiation damage to bones, they rebuild them (in rats, anyway!) http://www.ncbi.nlm.nih.gov/pmc/articles/PMC361205... So you've probably been doing yourself good by eating them all along.
Thanks for the Genetics for Dummies, lol! That really does look like a good resource.
Solfeo, thanks for the Genelex test info. I'm so curious now, I may spring for the $695 one of these days (if I get an unexpected windfall, perhaps!)
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Early this afternoon I wrote this long email to my naturopath (he is ordering the test) with links to all of the supporting evidence for testing. I figured days to a week to even read it based on my experience with every other doctor I have ever known, but he got back to me before the end of business. Letter of medical necessity is written, mailed, and the Genelex test kit is ordered. If the insurance company responds before my next appointment on the 27th I'll be getting the test then. I love this guy. He is a young doctor and still prides himself on providing excellent service at all times. What he lacks in experience is more than made up for by his enthusiasm and willingness to learn new things. I always feel like I'm fighting an uphill battle with my other older, more jaded doctors. I'm persistent so I usually get what I want, but I absolutely hate the persuasion process.
$695 is more than I can really afford to spend right now but if the insurance doesn't cover it I consider it a worthwhile investment. Certainly cheaper and less hassle than a tamoxifen failure. If they deny the first pre-auth request I can appeal it myself, and I'll just bombard them with so much scientific gobblydegook they will approve it to save themselves the trouble of reading it all, hehe.
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Wow, Solfeo, your doctor is awesome! Hope it goes through with insurance (and if they know what's good for them they'll approve it the first time, lol!)
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Good Morning, Been off for a few days. I was in contact with Genelex. JR Williams is the contact person for problems with the site I haven't talked with him yet. I figured I'd post his numbers. My contact is Dan D. Both are very interested in knowing your concerns. I haven't caught up on reading, Solfeo I 'm working on sending the price list.
"Dan mentioned you identified some dead links on our site. We appreciate you bringing this to our attention. At your earliest convenience, if you can forward me some of these links, we can address this issue right away. I'll scour the website in the meantime, but if you have any you know of at the moment, please forward. Thanks you very much for your assistance.
Regards,
JR WilliamsCustomer Support Account Manager
Direct (206) 826-1953 or (800) 523-3080 x 1953 Fax (206) 219-4000
JR Williams JWilliams@genelex.com "
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Whoopiehootiedowhop SOLFEO, I did read a bit just now looks like you are squared away. So wish all docs were like your Naturopath. I still going to send the price list just to see if it can be done and opened by you. BBL.
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Sas ~ Glad to see JR Williams is still there! He helped me set up my account last October. Very nice and very patient fellow. Last year their website was a mess. The main menu for the types of panels they offered had a dead link for the cancer test. Other sections also had dead links or links that lead to blank pages. That is why I didn't renew. Looking at the main website now, it is better laid out and all links seem to be working.
Solfeo ~ I just found the paperwork Genelex sent me when I had my test. Same info that you posted a link to. I posted my copy below as a photo.
Genelex is very helpful with figuring out how the tests will be paid. If you will owe them a balance of over $100 they will put you on a payment plan. If your income is below 400% of the national poverty guidelines, you may be able to get the test for a reduced cost or for free. See the income limits here - a single person can make up to $47,520; a two person household is up to $64,080.
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I should note that naturopathic physicians are licensed doctors that can prescribe drugs in my state. Naturopathic care is also covered by my insurance (as well as chiropractic and acupuncture), which is why he was able to seek the insurance pre-approval. Most people are probably going to need an MD or DO to do that, but if your doctor doesn't want to order the test or insurance won't cover it regardless, then an ND might be a good alternative. Genelex asks for a National Provider Identification (NPI) number in the test kit request. Not sure if all NDs will have one of those or if it's a hard requirement to set up an account.
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I'm still waiting for the insurance approval. I was hoping to have the test done before I saw my new oncologist yesterday but that was not to be. I did talk to him about it and he definitely was not into CYP2D6 testing. I'm glad I already had it set up before I saw him. He laughed when I told him I was having the test, but he wasn't against changing my treatment based on the results because the alternative of AI + ovarian suppression is a standard approach. I can tell he is going to be another "by the book" kind of MO. He wasn't loving the natural treatments I do on the side either, but I didn't really give him the choice to disapprove so he stayed mostly silent on the subject. I was told by my ND that my old retiring MO was the only one in the area who is open to alternative treatments and I guess that is probably going to be true.
It is notable to mention how much my attitude about doctors has changed since the cancer diagnosis. I don't care much if they approve of my choices as long as they do what I ask and don't get their feelings hurt over it.
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Solfeo LMAO, "It is notable to mention how much my attitude about doctors has changed since the cancer diagnosis. I don't care much if they approve of my choices as long as they do what I ask and don't get their feelings hurt over it.". Tis true, tis true. When you walk in educated about your disease process, it's quite a different show.
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I got the insurance pre-approval today and because I have already reached max out of pocket for the year the test won't cost me a cent. Will be mailing the kit to Genelex on Monday!
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My sample was mailed on Monday. This is what Genelex tells me will happen next. The results will be sent to my doctor in about a week. A week after that I will receive a plastic wallet card with my results that I can hand to other prescribing providers in the future. With that comes a 30-day free trial subscription to YouScript, which you can extend to a year for $23.95. Not sure if I'll need that or not but I'll decide when I see what kind of info is provided.
Interestingly, I am experiencing some mild anxiety waiting for the results. As I've said I tolerate the tamoxifen very well. I have also spent the good part of 7 months extensively researching tamoxifen, including drug and supplement interactions, and having to switch drugs means starting all over. Plus I am so close to natural menopause at this point I would prefer to wait it out before switching to an AI. I didn't have a period for 7 months until April, and then have only had one spotting incident since then. My FSH was at menopausal levels in February. So I'm pretty much there, just waiting for finalization of the process in the next year or so. If I do AI plus ovarian suppression, my oncologist wants to do the OS for 3 years out of caution. I don't want to be unnaturally suppressing my ovaries any longer than necessary, but once I start there's no way to know when I would have reached menopause without it. I definitely don't want oophorectomy at this late stage.
For many years I have preferred natural medicine over conventional and have had great success going the natural route for most problems. That is not something I would ever do for cancer, but it was really hard to talk myself into taking the tamoxifen because I was so afraid of all the horrible things it would do to my body and ill effects on my health. Those fears turned out to be mostly unfounded, but I don't think I have ever heard of anyone not having issues with ovarian suppression. If there is anyone out there please share!
If I am a normal or poor metabolizer my choice is clear. If I find out I am an intermediate metabolizer it's going to be another one of those agonizing decisions we all know so well. With my stats my odds are pretty decent even without endocrine therapy, and it would mean I am getting some benefit from the tamoxifen, so I'll have to decide how much risk I am willing to take. I did have the large tumor that was misdiagnosed for at least 5 years so that is a concern with regard to metastisis.
So anyway just sharing the process to prepare others for what they might go through, logistically and mentally.
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Solfeo thanks for the info. Your fears, in my opinion, take us back to the phone call or talk where we were told. All fear goes back to that life changing moment. bbl
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Hi ladies, I saw a post on one of the hormone boards about a test for tamoxifen effectiveness by a company called Kalios Genetics. It costs only $99. Has anyone here researched this option? A quick look at the web site doesn't give many details of what the test does - I didn't seen a specific mention of CYP2D6.
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Hi, jojo, The site should have an 800 number. call and pick their brain.
Solfeo, I had my YouScript subscription since 2010. I wasn't tested till 2011 before the 3's were known to have abnormal allele's. 3's were tested in 2014. I've used the drug site innumberable(sic) times to evaluate drugs for myself, DH, and members. That can be done without the genetics. WITH the genetics it's amazing how the info changes.
Genelex is going to start licensing the YouScript once they incorporate separately from Genelex.
BTW can you follow up on the web site problems. You might have to jog his memory b/c there's been a lapse time.
Have you checked out the Beta blocker thread?
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here is a sample report of the tamoxifen test. see page 4 - it lists all the gene mutations they test for.
https://d10u8wcbc2zotv.cloudfront.net/media/PGXV1%20Tamoxifen%20Report.pdf
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I was just directed to this thread from my own. I posted the Kailos link, and yes it tests for CYP2D6. I'm actually going to do the full panel because I have other drug families that don't work on me so I'm going to see what it turns up.
I believe CYP1A2 is the one associated with AI inhibitors effectiveness, so I'm interested to see if that shows anything.
I still need to read this whole thread, but as I've stated before, I find it REALLY odd that there appears to be no way to see if the drugs we take are actually doing what they think. They just assume they are. If 6 to 10% of the population does not properly metabolize with CYP2D6, that's a WHOLE lot of people who are not getting effective treatment.
What is your experience with getting your oncologist to pay attention to this stuff? Mine is not interested in these individual approaches and wants to apply blanket treatment. I can't accept that.
Here is the link to the complete panel:
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Sassy, you take me back to that original phone call, when the surgeon felt so bad about delivering the news he refused to use the words "you have cancer" and would only say "they found malignant cells." Then saying he didn't want to tell me more on the phone because he didn't want to depress me. Too late! haha. I haven't had a chance to look into the beta blocker stuff, but I will. Thank you for sending it.
McClure77 - neither my previous retired MO nor her replacement were very enthusiastic about this testing, but my naturopath was happy to order the tests. I am having the Genelex polypharmacy test that includes CYP2D6, 2C9, 3A4, 3A5 and 2C19. My insurance is covering it.
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Solfeo -- I'll be interested to see what you find out! My primary care doc is fine with doing the tests and thinks there could certainly be some benefit for me. My oncologist doesn't see any benefit, but I declined further hormonal therapy this week, despite my high chance of recurrence. I feel like we're throwing darts at a dartboard with a blindfold on, and where the dartboard has no score values on it.
I told a friend today, I'm not as much afraid of dying of cancer as I am of living miserably on treatment and then dying ANYWAY. It's hard to find really useful statistics on this stuff.
Maybe these tests will help. Maybe they'll just conform what I already know. Who knows until I do it?
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We are on the cusp of change in yet another area. It's going to be a radical shift for the docs. This will be consumer driven b/c the word is spreading that there is a better way. How's that for one sentence that says it all LOL.
McClure. Hi!. When you are reading key in on my coined phrase Paintball Therapy and my coined definition. I'm hoping it will get into the lexicon. Maybe I should enter it into Wiki myself
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