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

Forum: Hormonal Therapy - Before, During, and After — This is a safe place to share your experiences of others considering or on hormonal treatment.

Posted on: Dec 10, 2013 08:28PM

Posted on: Dec 10, 2013 08:28PM

maggs09 wrote:

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 Post a reply

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

Maggs09Joined: Jun 2012Posts: 105 Post a reply

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?

Surgery 5/1/2012 Lumpectomy; Lumpectomy (Right) Dx 5/14/2012, ILC, 6cm+, Stage IIIC, Grade 2, 16/18 nodes, ER+/PR+, HER2- Surgery 6/27/2012 Lymph node removal; Lymph node removal (Right): Underarm/Axillary; Mastectomy; Mastectomy (Right) Chemotherapy 8/1/2012 AC + T (Taxol) Radiation Therapy 12/12/2012 Breast, Lymph nodes Hormonal Therapy 12/27/2012 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Page 2 of 6 (55 results)

Log in to post a reply

Dec 12, 2013 01:08PM wallycat wrote:

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.

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
Log in to post a reply

Dec 12, 2013 01:45PM cactus wrote:

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.

Diagnosed ALH September 2013. Tamoxifen January 2014.
Log in to post a reply

Dec 12, 2013 11:32PM maggs09 wrote:

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.

Surgery 5/1/2012 Lumpectomy; Lumpectomy (Right) Dx 5/14/2012, ILC, 6cm+, Stage IIIC, Grade 2, 16/18 nodes, ER+/PR+, HER2- Surgery 6/27/2012 Lymph node removal; Lymph node removal (Right): Underarm/Axillary; Mastectomy; Mastectomy (Right) Chemotherapy 8/1/2012 AC + T (Taxol) Radiation Therapy 12/12/2012 Breast, Lymph nodes Hormonal Therapy 12/27/2012 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Dec 13, 2013 01:01AM cactus wrote:

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

Diagnosed ALH September 2013. Tamoxifen January 2014.
Log in to post a reply

Dec 15, 2013 12:23AM fondak wrote:

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

Dx 8/5/2011, IDC, 5cm, Stage IIIA, Grade 2, 9/9 nodes, ER+/PR+, HER2-
Log in to post a reply

Dec 15, 2013 12:37AM Shira wrote:

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.


Dx 8/16/2013, IDC, 2cm, Stage I, Grade 2, 0/16 nodes, ER+/PR+, HER2- Surgery 8/27/2013 Lymph node removal: Right, Sentinel Surgery 8/27/2013 Lumpectomy: Right Surgery 10/8/2013 Lumpectomy: Right Surgery 10/8/2013 Lymph node removal: Right, Underarm/Axillary Dx 7/27/2017, LCIS, Right
Log in to post a reply

Dec 15, 2013 02:33PM cactus wrote:

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.


Diagnosed ALH September 2013. Tamoxifen January 2014.
Log in to post a reply

Dec 15, 2013 11:27PM Shira wrote:

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


Dx 8/16/2013, IDC, 2cm, Stage I, Grade 2, 0/16 nodes, ER+/PR+, HER2- Surgery 8/27/2013 Lymph node removal: Right, Sentinel Surgery 8/27/2013 Lumpectomy: Right Surgery 10/8/2013 Lumpectomy: Right Surgery 10/8/2013 Lymph node removal: Right, Underarm/Axillary Dx 7/27/2017, LCIS, Right
Log in to post a reply

Dec 16, 2013 12:55AM cactus wrote:

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...

Diagnosed ALH September 2013. Tamoxifen January 2014.
Log in to post a reply

Dec 17, 2013 01:43AM - edited Dec 17, 2013 01:52AM by 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? 

Page 2 of 6 (55 results)

Scroll to top button