Tamoxifen and Curcumin - my story of interaction....

Maggs09

hello ladies,

I posted this under "melatonin and tamoxifen" topic, but then I though that it maybe a good idea to copy both my posts to a new topic related to curcumin and tamoxifen.

Again, this is only my experience, proved by medical tests

Maggs09Joined: Jun 2012Posts: 105

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24 hours ago Maggs09 wrote:

Hello ladies,

I posted a while ago about tamoxifen (on tamoxifen from Dec/12) and curcumin. But after reading sime of your recent posts, I decided to share my experience.

I started using curcumin in spring, 2013. I was very excited about this supplement after reading about it's anti cancer benefits. I also increased my calcium and vit D intake after being dx with osteopenia.

Before this, (in February), I had CYP2D6 testing done (in my third month of tamoxifen), which confirmed that I'm a very good metabolizer of the drug and my blood endoxifen level (active form of tamoxifen), was higher then normal. I was happy! Before buying Curcumin capsules, I've asked my individualized hormonal therapy dr about any possible interaction between tamoxifen and curcumin and he said it should be fine, even though curcumin may slightly inhibit the enzyme required to metabolize tamoxifen. So you can imagine my disappointment when I had endoxifen level checked again in the summer and it dropped by almost 50%. My dr advised me then to stop curcumin and limit calcium supplement to morning and lunch, so it's gone/absorbed before my evening tamoxifen dose.

We just repeated the blood test last week and tomorrow I will find out if in my case giving up curcumin increased my absorption of tamoxifen.

I haven't tried melatonin out of fear that it may reduce tamoxifen efficacy.

This is all so stressful and difficult to deal with. What is your experience with melatonin? Does it also use the same liver enzyme as tamoxifen?

Maggs

Dx 5/14/2012, ILC, 6cm+, Stage IIIc, Grade 2, 16/18 nodes, ER+/PR+, HER2-Surgery 05/02/2012 Lumpectomy (Right)Surgery 06/27/2012 Mastectomy (Right); Lymph Node Removal: Axillary Lymph Node Dissection (Right)Chemotherapy 08/01/2012 Adriamycin, Cytoxan, TaxolRadiation Therapy 12/12/2012 ExternalHormonal Therapy 12/28/2012 Tamoxifen

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Maggs09Joined: Jun 2012Posts: 105

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6 minutes ago Maggs09 wrote:

Just a short update on my endoxifen results after stopping curcumin. They are back to the same level from before starting supplementing with curcumin. Doubled since fall, after giving up curcumin. Dr was very happy with the results but also very suprised that it made such a huge difference. He is running a study on drugs and supplements interactions, (mostly drugs), and a lot of his work focuses on tamoxifen. Curcumin was the only new thing I added after 4 months from starting tamoxifen and over the next 2 months my levels dropped from 28 to below 14. Three months after stopping this supplement, active endoxifen in my blood increased to 30.

The brand I took is: BELL. CURCUMIN 2000X #67, 550mg (ingredients: 300mg of turmeric extract 25:1, cayenne pepper 100mg, Hawthorne berries 100mg, vit E 90UI). I only took 1 capsule daily, usually in the morning, while tamoxifen always after 9-10pm.

Just to make it clear, I didn't see any naturopath for advice on how to supplement, so it is possible that I was taking it incorrectly, on my own. I basically don't take a lot of stuff, just basic calcium with magnesium and vit D, (about 600mg daily), vit C 500, additional 1000UI VIT D, vit B6 50mg and high quality fish oil (1 capsule).

We don't know if this specific brand reduced tamoxifen absorption and metabolism in my body, but just in case - no more curcumin for me for as long as I'm on tamoxifen. It could have a totally different effect on another person, maybe if combined with something else, who knows?

odie16

Thank you for sharing your story to help others. I don't take any supplements other than Biotin for this reason. Wishing you the best....

TwoHobbies

Thanks for posting this. I have always been reluctant to take supplements especially when you're taking other meds but sometimes it's so tempting when you read these studies. This tips me toward the side of eating well but not taking supplements. I also don't feel so weird for avoiding taking allergy meds and calcium with my morning dose of anastrazole. I was worried even those would limit absorption.

Scandophile

Curcumin is such a powerful anti-oxidant that its helping your body clear out free radicals. I take it and its been a powerhouse for me. My doctor has suggested putting me on Tamoxifen but I have declined for now but should it become very necessary, then this is good intel to have so that I can stop the curcumin. Thank you!

Maggs09

scandophile, curcumin seems to have wonderful anti cancer qualities and I was actually hoping that supplementing with it may even prevent my body from becoming immune to this drug down the road, (based on some research done in the labolatories I've read about). I knew that it would be slightly inhibiting the enzymes responsible for absorption and activation of tamoxifen (to convert it into endoxifen, which is attaching itself to ER receptors therefore blocking off a real estrogen), but since genetically I'm an extensive metabolizer of tamoxifen, I thought I can "afford" a small drop. Never expected to go down from 28 to 14 in just 2 months! The good thing is that tamoxifen already activated cumulates in our blood stream, kind of like in a "saving account". So even if let's say for a month you won't be metabolizing much or even not taking any, our bodies will be using what we've saved up, slowly depleting those "savings". I'm glad I didnt continue with curcumin any longer, because obviously in my case it was allowing tamoxifen to go through my body without being activated and therefore opening me up for "estrogen invasion", lol.

Dr Kim is going to use this incident for his study case. And since I also have some OCD, (lol), I'm very exact with all my records, which is important.

Since you are currently not on tamoxifen, I'm sure curcumin can only help! I will most likely return to it once switched to AIs, since they work differently.

All the best to all of us!

Maggs

Maggs09

TwoHobbies and Odie16, I totally agree with being cautious with any supplements and drugs while on tamoxifen or other medication. Trying to get the most nutrients from our diets is so much better then swallowing 30 pills daily. I still take some vitamins, such as D, small dose of C during winter, calcium complex and fish oil. Small dose of vit B but without folic acid which most likely increases our risk.

I often use American Institute for Cancer Research website, for any updates on new studies and their evaluation. So far it seems to be the most reliable (not sponsored by any pharmaceutical companies or other businesses), organization focusing on cancer survival and prevention through proper nutrition. Two independent panels review all new world research for a variety of cancers and classifies all evidence. Last update for bc was, I believe, in 2012, but there are over 300 new studies being reviewed and new update is due in 2014.

(It's under a heading: CUP - continuos update project). There is a lot of great info on that website if anybody had time to browse it and read highlighted "chapters" in those articles).

Sometimes majority of us seem to simply overestimate certain things as reducing our risk and underestimate others.

Fallleaves

Hi Maggs,

Thanks for sharing your experience. I am surprised that the curcumin had that interaction with the tamoxifen you were taking. That's good that your MO is doing a study on interactions, and will write it up, though. Most of what I've seen so far had pointed to a beneficial interaction between curcumin and tamoxifen (I posted links to two of the studies below), but of course it may be that your experience is more common than we know about yet. Definitely something we should all be aware of.

http://cancerres.aacrjournals.org/cgi/content/abstract/69/24_MeetingAbstracts/3098

http://www.ncbi.nlm.nih.gov/pubmed/23299550

coraleliz

Maggs, What is a good level for "endoxifen". Perhaps 14 is good enough? Most of us never have this checked. I doubt my MO will check mine, even if I ask. Most of us don't have CYP2D6 checked either because it's not very reliable. Another thought, perhaps it's something else in your supplement that caused the decrease? With the supplement industry being unregulated, who really knows what's in those capsules/pills?

OK, I'm not an alternative gal. But I do take turmeric. I'm not convinced that it has anti-cancer properties. My reason for taking it is that it helps with the arthritis in my hand. I take about 1/4tsp a day. When I skip it for a couple of days ,the joints in my hand become reddened & I can't grip anything. I refuse to buy it in supplement form. It's so ridiculously overpriced that way(& who knows what's really in it?)........but I recently read that spices from other countries are sometime contaminated with bacteria(salmonella, I think). UGH!

Just throwing my thoughts to the wind here..........this isn't the alternative forum, so I feel I can say these things. Take no offense.

Maggs09

Coraleliz, no offense taken. This is just my experience with curcumin, but I felt obligated to share in case it could interest others. And you are right, it could be this specific brand too. The actually spice will most likely act differently and may not be such a strong inhibitor, who knows?

cyp2d6 test is very accurate in evaluating person's genotype and establishing whether that person can benefit from a drug that needs to be metabolized using those specific pathways, but does not predict who will have a recurrence and who will not. Cancer is very complex and very individual. There is still so much unknown about any drug/nutrition interactions that even great metabolizers may be decreasing efficacy of the drug unintentionally (like me with those capsules), and people with only one pathway working may still activate enough drug to block ER receptors successfully. Each one of us will also have different number of those receptors in our bodies, therefore no study will give us a "right or wrong" answer, just an understanding of how everything seems to be working.

Study below explains a lot about a "technical" aspects of cyp2d6 for anyone interested.

The large studies they are referring to in above publication were done on postmenopausal at dx women, therefore we cannot assume that it would have the same outcomes for premenopausal at dx patients.

http://m.jco.ascopubs.org/content/29/24/3232.full

My onc didn't order this test, again she said: "doesn't predict the outcome", only about 10%of population doesn't have both alleles working to properly metabolize tamoxifen, not part of the protocol"...bla bla bla... Luckily she agreed to refer me to another cancer clinic to see another dr who does this research and we went from there. All I wanted to know was if I have this ability to metabolize tamoxifen. If not, if I had both alleles inactive, I would insist on removing ovaries and quickly switching to AIs.

This dr/researcher is great in explaining all these mechanisms. my understanding is that endoxifen cumulates in the bloodstream (like savings), so even if for a couple of weeks or a month you won't metabolize as much because something else will inhibit the enzyme required to do so, you should still be ok, using your "savings". Tamoxifen (once converted into endoxifen) doesn't leave our bodies that easily, it builds up, therefore creating "tamoxifen long lasting effect". I think that taking curcumin "on and off " could actually be a good strategy especially for people who are early stages and/or only partially ER +.

Since I'm 100% ER+ and more advanced stage, I choose to be more careful.

Also what've learned is that vit D helps with tamoxifen metabolism. I take it daily anywhere between 1400-2000UI, depending on a season of the year.

Sorry for this chaotic post but I'm typing on my phone😊

Maggs09

This another publication from less then a year ago:

http://www.mayoclinic.org/news2012-rst/7228.html

I personally believe that knowing own genotype can help with selecting the right "anti estrogen" strategy, especially that we do have other then tamoxifen options.

peacestrength

Thanks for this info, Maggs09.

wallycat

When I was first dx and spoke to my onco at the time about cyp2d6, he had no idea what I was even talking about.

I am curious if the studies that say tamoxifen does not work for ILC have any correlation to the cyp2D6 or to the ILC as a cancer.

If Mayo is right, then many gals who are premenopause are going to be forced to have their ovaries shut down (which in itself may be responsible for slowing an ER+ cancer) to take the arimidex or other AIs.

cactus

Maggs09, really helpful thread. I recently stumbled across this report from March 2012, discussing two studies that concluded that "CYP2D6 genotypes that were indicative of reduced activity of enzymes that metabolize tamoxifen did not predict clinical responsiveness to adjuvant tamoxifen therapy, among postmenopausal women with early-stage breast cancer."

http://www.cancer.med.umich.edu/news/genotype-does-not-predict-tamoxifen-benefit-2012.shtml

But the December 2012 report from Mayo you linked to seems to reach a different conclusion, so I'm thinking I should not rule out the benefits of the CYP2D6 genotype testing. I'm waiting to see an oncologist, and trying to get my Tamoxifen questions in order. No idea if my oncologist will know or care about CYP2D6 either (I don't live in a major city, and we seem to lag behind here.) I'm glad to have a more rounded understanding of the issue, though, so thank you.

Maggs09

Cactus, thanks for bringing up the above link. Very interesting. I was already familiar with the outcome of BIG 1-98 study, but this article adds more to it. I actually used outcome of BIG 1-98 (printed conclusion) and Mayo publication from Dec/2012 to convince my onc to refer me to a dr who did this testing.

All those studies were done only on post menopausal at dx women, which were already limited producers of estrogen anyway. I was still premenopausal. There is a note at the ending conclusion of BIG 1-98 that "more studies for premenopausal at dx women is required" before assuming that the same results would apply to both: post and pre menopausal groups.

Anyway, regardless of an individual genotype it seems like some of us (including myself) can do things to prevent tamoxifen from being metabolized properly and vice versa.

I wonder if onc can order at least endoxifen level test without doing a whole cyp2d6 genotype. Both are just a blood tests, but the second shouldn't be very complicated, I think. That would at least give a person an idea if there is a sufficient deposit of already activated tamoxifen in the bloodstream. If there is, then no need to change or test anything, but if it isn't then maybe it would make sense to test cyp2d6 and verify that no other medication and supplements are interacting with tamoxifen absorption and metabolism.

We all know that for some of us tamoxifen works wonders regardless of stage (including stage 4s), keeping bc in remission, and for some of us it simply doesn't work. I feel that if there is any possibility of at least estimating how likely this drug may be benefiting a patient or not - it should be offered to us, so we can choose to either take it, or consider different options such as ovarian suppression and AIs or something else.

cactus

Maggs09, I noticed that ending conclusion comment also, about more studies required for premenopausal women. (I'm currently premenopausal, but barely.) I don't know if an onc can order an endoxifen level test alone, I think that's a good question.

As an aside, and with apologies for pulling your thread a bit further off your original good topic (interaction of tamoxifen and curcumin) here is a link to an encouraging article published just today in Science Daily, regarding the Phase 1 trial of Z-endoxifen. My layman's understanding is this drug might allow the delivery of endoxifen directly without using tamoxifen as a vehicle, and so far the drug appears to be safe even at the highest doses they tested. Fingers crossed that further research by Dr. Goetz (the same Mayo clinic oncologist in your Mayo study link above) keeps making good progress. It would be wonderful if we could benefit from endoxifen in the future, while avoiding Tamoxifen.

http://www.sciencedaily.com/releases/2013/12/131212185835.htm

fondak

Hi ladies,  I am just wanting to make sure that I am understanding this correctly.  Aromatase inhibitors don't require the CYPD26 enzyme which is inhibited by curcumin.  Is that right?  I take curcumin also along with exemestane.   

Thanks

Shira

Interesting, thanks for sharing.  I asked my Oncologist about CYP2D6, and she wouldn't test me, stating something along the lines of that there are no studies proving that it is a factor (this was her answer for a lot of things). 

However, I found some interesting articles and then a video on YouTube that made a lot of sense to me (and I ended up not taking Tamoxifen, and I do take Curcumin, but that's a topic for another thread)!  The video was a presentation from a doctor who explained about the fast and slow metabolizers, and in their research they found that the fast metabolizers had hot flashes and the slow did not, so if this is true, hot flashes could be a sign that Tamoxifen was working.  Then if I remember correctly, they were also testing if Tamoxifen would be effective at higher doses for he slower metabolizers.   

Then the other day I was telling my regular doctor how if I could have been sure Tamoxifen would work for me, I might have been more inclined to try it, and she explained that she's only had one patient who was tested for CYP2D6, and it was because she was on Tamoxifen and anti-depressant medication, which can interfere.

cactus

fondak, it seems unclear to me whether or not curcumin inhibits the CYP2D6 enzyme. The two studies posted by fallleaves above indicates that curcumin can sensitize some cells to tamoxifen treatment, making tamoxifen more effective in some cases. But it's very interesting that Maggs09's well-documented experience seems to indicate that in her case, the addition of curcumin adversely affected the effectiveness of Tamoxifen in her system. Maybe different formulations of curcumin are part of the puzzle (this gets over my head pretty quickly.) Or maybe this is one of those responses that varies from one individual to another? At any rate I agree with fallleaves, it's something good for us to be aware of, and I'm glad Maggs09 posted this thread.

I looked for info about exemestane and curcumin, and the author of this article states that "curcumin coadministration with any AI is unproblematic in terms of any potential adverse metabolic interaction or pharmacokinetics, and no adverse interactions have appeared to date for curcuminin in general."

http://www.balanceherbs.co.il/category.asp?title=interaction%20of%20Arimidex%20and%20curcumin&pid=198&id=26

Maybe someone with additional info about aromatase inhibitors and curcumin will pop in here.

Shira, it frustrates me when doctors aren't open to more discussion (about things like CYP2D6) when we're just trying to understand these things better, to make better decisions for our own health. I have read the same info you mentioned about more severe side effects possibly indicating the Tamoxifen was working better, and also about research being needed to see if higher doses of Tamoxifen could be beneficial for slow metabolizers.

It makes me feel less helpless when I try to get a handle on these issues, so I always appreciate these discussions.

Shira

Hi Cactus, 

It frustrates me too when doctors aren't open to more discussion.  I know they have a lot of restrictions, but I think some of them handle the conversation part better than others and/or have more tolerance for questioning current standards.  I am going to an integrative MD tomorrow, which I am curious, excited and maybe a bit nervous about!

With regards to the curcumin reaction, maybe it can vary by type, dose, inactive ingredients and/or by and person?  I think I actually reacted to Co-Enzyme Q10 and Lisinopril, a blood pressure medication, based on a reaction I had when Co-Enzyme 10 was the only new item in what I was taking and some possible side effects not specific to the combination that I read on line.   I haven't tried again, although it might be a good question for the doc tomorrow.

Shira

cactus

Shira, good luck with your appointment tomorrow. My surgeon turned out to be someone I work well with, regarding info exchange, but I am still sorting out oncologists...

new2bc

I asked my oncologist to do the CYP2D6 test last month. He told me that this test is not reliable and even if it came back showing that tamoxifen is not being absorbed, he can not increase the dosage anyway. I insisted on doing the test but after contacting my insurance, I found out I had to pay for this test myself. Then I thought why I have to pay for a test that is not even reliable, so I gave up. I also take curcumin and this info about interaction is making me nervous. Did anybody pay for this test?   

If your insurance pays for this test, can more people do this test and update this forum with their results? 

Heidihill

I have done a metabolizing test and was an Ultra rapid metabolizer. My onc gave me the choice then of switching to Tamoxifen. I chose to stick with Femara a few more years. And eat a lot of curries. When I started Tamoxifen my hot flashes got much worse. I also cut down on my curries since joint pain was no longer an issue with Tamoxifen and I had read about the possibility of interference. I will ask my onc about checking endoxifen levels since that seems to be the critical point and just to be sure nothing has changed. I am only on a 10 mg daily dose. The metabolizing test I did involved taking cough medicine as in this study:

http://www.sciencedaily.com/releases/2010/11/101118194559.htm

Maggs09

Hi everyone, I'm just trying to catch up with all posts that I've missed. 

Fondak, AIs don't need cyp2d6, therefore there is no interaction with curcumin or anything that inhibits this enzyme.

Cactus, I hope you are right and eventually we will be able to get endoxifen directly without worrying about having to metabolize anything, thank you for posting this link. It's important to keep up to date with everything, especially that I will have to take some kind of anti estrogen medications indefinitely, not just for 5 years. 

Heidihill, that's interesting, my geneotype test was run on my blood, so was endoxifen level.  I was not required to take any cough medication.  I will look at the study you posted. 😊

I will check with my dr assistant whether endoxifen levels can be easily checked at any lab, or is there any specific requirement that needs to be met? I will let you know what she says. 

cactus

Maggs09, I'm glad the link was helpful! 

Heidihill, thanks for your link also. Apparently the active ingredient in the cough medication is dextromethorphan. I was able to turn up a bit more info supporting the idea of using dextromethorphan metabolism as a way to monitor and predict tamoxifen metabolism (and the resulting concentration of endoxifen.) Here's a study from 2012:

http://meetinglibrary.asco.org/content/92799-114

They concluded the test was fast, simple and inexpensive. I wonder how many oncologists use this method.

Maggs09

oh, if only our doctors/oncologists would be willing to look "outside the box" or should I say: include things from outside the official treatment protocol, maybe more of us would be able to stay in much longer or even permanent remission. 

I just finished reading this year published very comprehensive article "Pathways to Breast Cancer Recurrence", (www.hindawi.com/isrn/oncology/2013/290568/), which talks a lot about cancer stem cells, various types, treatments andresistance to those tx,   but also describes different paths that those cells are using to survive. If our onc gave us a chance to disable even some of those pathways, obviously cancer would have less options to recur, or am I just dreaming????

cactus

Maggs09, thanks for that link, I'm still working my way through that article. Lots to read there, with links to studies.

About dreaming...I don't know how many oncs will go outside official protocol, but I think with some doctors
we can have an impact, as well-informed patients who present questions
and articles. My surgeon is very good about being open to new research.

I'm stubborn
about taking a very active role in my family's health issues, partly out
of self defense. We don't have a lot of cutting edge medical facilities
here, so I push to find doctors that will listen to (and
aren't annoyed by) questions/discussions. I don't presume to be able to
teach my doctors anything, but I think if they were honest, the really good
ones would admit that they are always learning themselves, with every
year and patient. (Although, I worry that docs may be less able to do
this, if there's a trend to ask more of them, for lower compensation.)

Even
if we present info that seems "out of the box", and our docs don't
pursue it, maybe if another patient raises the same question six
months later, the same doc might be more open to looking into it. Maybe he/she will notice an article in a journal, months later, because we raised the issue. Maybe we're helping another person down the road.

Maggs09

cactus, that is such a great post! I totally agree, we need to be politely persistent with our doctors and hopefully they will listen...if not right away, then maybe a few months later, after another patient raises the same issue. 

As for this article... It only confirms how very individual and different every cancer is, and applying the same protocol to almost each case obviously doesn't work and there is a need for more individualized treatment approach, especially for those patients who are willing to do part of the work by researching, getting specific tests...and bringing it up with their doctors. I have taken a very active role in my cancer story (advanced bc and another early stage primary in the colon dx within 1 month, again thanks to my persistence that annoyed several of my doctors and proved them very wrong at the end). 

I'm curious what your take on this article? At first it left me very depressed, but now when I understand it better, I'm not that anxious...

Anonymous

I took tamox for 5 years and was using melatonin often to help get to sleep.  Pharmacist cleared me to use it with the tamox; said only thing to avoid with tamox was grapefruit and it's juice (can decrease the efficacy of tamox and many other medications).

Anne

Maggs09

that's so true about grapefruit juice and blood oranges. Apparently they have a huge impact on enzyme activity. 

Good to hear about melatonine, but after my issue with curcumin, which I though would rather enhance tamoxifen efficacy, I'm afraid to take anything that uses the same as tamoxifen enzyme.

I guess getting curcumin in food may have totally different result, but I don't enjoy this spice at all...so I was really counting on this supplement. 

I'm debating whether I should give turmeric another try in spring, about a month before my next endoxifen level test scheduled for June,  maybe a different brand, just to be sure that it wasn't this specific Bell supplement  causing such a significant drop in absorption of tamoxifen.  Right now I don't have a courage to do it again, lol, but I will consult Dr Kim regarding this...

Maggs09

For anyone interested in cyp2d6 and tamoxifen study...

http://www.cancer.gov/clinicaltrials/search/view?cdrid=643454&version=HealthProfessional&protocolsearchid=6402279

coraleliz

I didn't know about blood oranges. The guy that sells them at our farmer's market told me that he'd have some in mid-January. I was really looking forward their arrival.

As far as trying a different brand of Curcumin. Maybe you can start with the spice Turmeric & make your own capsules. That's what I did. At first I purchased Turmeric capsules from the Vitamin Store. I opened one up & measured about 1/4tsp per capsule. I buy Turmeric from Amazon for $7-8/pound for the organic. Just a thought. I hate supporting the pharmaceutical companies as much as I hate supporting the supplement industry. I pretty grumpy today. I hate everything! LOL