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Topic: Oil of Oregano

Forum: Complementary and Holistic Medicine and Treatment — Complementary medicine refers to treatments that are used WITH standard treatment. Holistic medicine is a term used to describe therapies that attempt to treat the patient as a whole person.

Posted on: Apr 5, 2017 01:34PM

Husband11 wrote:

I want to share something, that should not be taken as advice, put purely an observation. When my wife's liver metastasis caused her ascites, the Onc first misdiagnosed it as gas and bloating. After trying everything he recommended, we tried oregano oil, because it is supposed to kill infections in the upper GI tract. Well, it had no benefit whatsoever in that regard, but, we saw the first of the rapid drops in tumor markers. So, my wife continued to take oregano oil during her breaks from xeloda (2 weeks on 2 weeks off, sometimes 2 on, 3 off, sometimes 1 week on, 1 week off), and we saw continuing drops in tumor markers. Fast forward around 8 months or more, and tumor markers continue to drop steadily. I chart this on an excel spreadsheet. Consistent drops. Even during the weeks off chemo. Maybe that's normal? My wife stops taking the oil of oregano for 5 weeks. Figuring, what's the point? Next test of her blood, virtually no drop in tumor markers. Onc says that's probably as low as they are going to get. So, remembering the oil of oregano, I get my wife to start taking it during her time off (2-3 weeks) during the next 5 weeks. And lo and behold, a significant drop in tumor markers again. Some 14% drop. Could it be related to the oil of oregano? Can't say, but she will continue to take the oil of oregano during her time off. I don't feel good about combining supplements with time on the drug. Both xeloda and oil of oregano are known to be strong inhibitors of the enzyme cyp2c9. By the way, I put 10 drops of oil of oregano in a gelatin capsule, so she doesn't have to taste it. She takes 3 capsules per day, only during her breaks from xeloda. I will report back in another 5 weeks when she gets her blood tested again.

Concerned husband Dx 2008, Left, Stage IIIB, Grade 3, 7/14 nodes, ER+/PR+, HER2- Dx 5/2016, Stage IV, metastasized to liver, ER+/PR+, HER2- Chemotherapy Xeloda (capecitabine) Targeted Therapy Ibrance (palbociclib) Chemotherapy Hormonal Therapy Femara (letrozole)
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Apr 7, 2017 09:12PM pipers_dream wrote:

Timothy, that is amazing! I do hope all continues to go well with your wife and with you.

Breast cancer should not be something to fear but rather a call to go deeper in this journey called life. Dx 11/14/2013, ILC, 5cm, Grade 2, ER+/PR+, HER2-
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Apr 23, 2017 09:02PM SusanV123 wrote:

This is very interesting..I will be following Smile

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Apr 24, 2017 06:32PM hopefour wrote:

Just seeing this and wanted to point out that Candida Yeast( google if you don't know about this yeast..fairly common) is treated with Oregano oil ( I take it also) and from my limited understand their is some possible correlation between the yeast and cancer…just thought I'd share this if you're interested in researching…I have not! I am very into gut health which lead me to this yeast issue and why I take oregano and well as probiotics and such. Your wife is very blessed to have you by her side!

Dx 5/2011, IDC, 1cm, Stage IIIA, Grade 1, 4/22 nodes, ER+/PR+, HER2-
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Apr 24, 2017 07:40PM ChiSandy wrote:

Could be if the Xeloda & oregano oil occupy the same enzymatic pathway they might have a synergistic effect that increases the amount of Xeloda circulating in the bloodstream. Usually if two substances occupy the same enzymatic pathway, they either have a synergistic effect (increasing the amount of the therapeutic substance—sometimes to dangerous or at least unpredictable levels, such as when someone on an ARB for hypertension or on letrozole eats grapefruit or drinks grapefruit juice) or cancel each other out (e.g., Tamoxifen and the SNDRI antidepressant Wellbutrin).

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 9/22/2015 Lumpectomy: Right Radiation Therapy 11/1/2015 3DCRT: Breast Hormonal Therapy 12/30/2015 Femara (letrozole)
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Apr 29, 2017 10:59AM solfeo wrote:

It's not cancer-related but I have an oil of oregano story. My husband had a MRSA infection that was resistant to every antibiotic. He was in the hospital on IV antibiotics for a week and came very close to losing his thumb. Then It kept coming back every time he stopped taking oral antibiotics and they were talking about long-term IV antibiotics without much hope of success. Scary day, but we turned down the IV, took him off all oral antibiotics, and threw the kitchen sink of natural remedies at it. Oil of oregano was a big part of the program, and we did get rid of the MRSA.

Could have been a fluke right? Then the same thing happened to my son with a highly resistant recurring MRSA infection. After several courses of antibiotics failed we put him on the same natural program that helped his dad, and sure enough we got rid of that MRSA again.

Anecdotal for sure but after seeing it happen twice with my own eyes that's all I need to remain a true believer. It has been two years since the last recurrence but if we have to deal with this again, we will do one course of antibiotics to weaken it, then knock it out completely with the oil of oregano et al before it has a chance to come back stronger.

Oncotype 13 Dx 7/31/2015, IDC, Right, 3cm, Stage IIA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 10/7/2015 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right Hormonal Therapy 11/16/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 2, 2017 05:31PM - edited May 3, 2017 08:59AM by Husband11

Modest drops in both tumor markers again. This continued drop is unexpected by the Oncologist, but it wouldn't be accurate to attribute it to anything in particular. Just happy that it continues after nearly stopping two cycles ago. Bigger drop in CEA than CA 15. Can't attribute it to anything definite. She will continue with the oil of oregano when off cycle of the chemo drug. Who knows?

Concerned husband Dx 2008, Left, Stage IIIB, Grade 3, 7/14 nodes, ER+/PR+, HER2- Dx 5/2016, Stage IV, metastasized to liver, ER+/PR+, HER2- Chemotherapy Xeloda (capecitabine) Targeted Therapy Ibrance (palbociclib) Chemotherapy Hormonal Therapy Femara (letrozole)
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May 3, 2017 09:27AM solfeo wrote:

If it is the oil of oregano helping I wonder what the mechanism could be? Have you run across any research that suggests a possible benefit for cancer, however obscure?

Oncotype 13 Dx 7/31/2015, IDC, Right, 3cm, Stage IIA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 10/7/2015 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right Hormonal Therapy 11/16/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 3, 2017 10:00AM Husband11 wrote:

Yes, I found some in vitro studies of essential oils and cancer, and they found oil of oregano had the strongest anti cancer action. Can't remember if they tried it on mice or not. I'll dig back into it and post up what I find.

Concerned husband Dx 2008, Left, Stage IIIB, Grade 3, 7/14 nodes, ER+/PR+, HER2- Dx 5/2016, Stage IV, metastasized to liver, ER+/PR+, HER2- Chemotherapy Xeloda (capecitabine) Targeted Therapy Ibrance (palbociclib) Chemotherapy Hormonal Therapy Femara (letrozole)
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May 3, 2017 10:08AM - edited May 3, 2017 04:02PM by Husband11

https://www.ncbi.nlm.nih.gov/pubmed/25230257

https://www.ncbi.nlm.nih.gov/pubmed/21535822

This one is an actual animal study, published in 2017 using Lyophilized (freeze dried) oregano:

https://www.ncbi.nlm.nih.gov/pubmed/26907089

This one a related species origanum majorana:

https://www.ncbi.nlm.nih.gov/pubmed/23874773

full article:

http://www.plosone.org/article/info%3Adoi%2F10.137...

Carvacrol, found in oregano oil:

https://www.ncbi.nlm.nih.gov/pubmed/20096548

https://www.ncbi.nlm.nih.gov/pubmed/28452024







Concerned husband Dx 2008, Left, Stage IIIB, Grade 3, 7/14 nodes, ER+/PR+, HER2- Dx 5/2016, Stage IV, metastasized to liver, ER+/PR+, HER2- Chemotherapy Xeloda (capecitabine) Targeted Therapy Ibrance (palbociclib) Chemotherapy Hormonal Therapy Femara (letrozole)
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May 4, 2017 08:05AM Husband11 wrote:

Abstract from 2017 article on whole oregano


Eur J Nutr. 2017 Apr;56(3):1303-1316. doi: 10.1007/s00394-016-1181-5. Epub 2016 Feb 23.

Oregano demonstrates distinct tumour-suppressive effects in the breast carcinoma model.

Kubatka P1, Kello M2, Kajo K3, Kruzliak P4, Výbohová D5, Mojžiš J2, Adamkov M6, Fialová S7, Veizerová L8, Zulli A9, Péč M10, Statelová D11, Grančai D7, Büsselberg D12.

Author information Abstract PURPOSE:

There has been a considerable interest in the identification of natural plant foods for developing effective agents against cancer. Thus, the anti-tumour effects of oregano in the in vivo and in vitro breast cancer model were evaluated.

METHODS:

Lyophilized oregano (ORE) was administered at two concentrations of 0.3 and 3 % through diet. The experiment was terminated 14 weeks after carcinogen administration. At autopsy, mammary tumours were removed and prepared for histopathological and immunohistochemical analysis. Moreover, in vitro evaluation in MCF-7 cells was carried out.

RESULTS:

Low-dose ORE suppressed tumour frequency by 55.5 %, tumour incidence by 44 %, and tumour volume by 44.5 % compared to control animals. Analysis of rat tumour cells showed Ki67, VEGFR-2, CD24, and EpCAM expression decrease and caspase-3 expression increase after low-dose ORE treatment. High-dose ORE lengthened tumour latency by 12.5 days; moreover, Bcl-2, VEGFR-2, CD24, and EpCAM expression decrease and caspase-3 expression increase in carcinoma cells were observed. Histopathological analysis revealed a decrease in the ratio of high-/low-grade carcinomas in both treated groups. In vitro studies showed that ORE decreased survival and proliferation of MCF-7 cells. In ORE-treated MCF-7 cells, an increase in cells expressing sub-G 0/G 1 DNA content and an increase in the percentage of annexin V/PI positive MCF-7 cells were observed. In vitro, both caspase-dependent and possible non-caspase-dependent apoptotic pathways were found. The deactivation of anti-apoptotic activity of Bcl-2, a decrease in mitochondrial membrane potential, and the activation of mitochondrial apoptosis pathway were observed in the ORE-treated MCF-7 cells.

CONCLUSIONS:

Our results demonstrate, for the first time, a distinct tumour-suppressive effect of oregano in the breast cancer model

Concerned husband Dx 2008, Left, Stage IIIB, Grade 3, 7/14 nodes, ER+/PR+, HER2- Dx 5/2016, Stage IV, metastasized to liver, ER+/PR+, HER2- Chemotherapy Xeloda (capecitabine) Targeted Therapy Ibrance (palbociclib) Chemotherapy Hormonal Therapy Femara (letrozole)
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May 4, 2017 09:51AM solfeo wrote:

Thanks for the info Timothy. I will be so thrilled for you guys if this helps your wife for a good long time.

If she isn't already taking one she might want to consider a probiotic supplement along with the oil of oregano, especially because she is taking it long term. I think antimicrobial herbs in the concentrated essential oil form probably kill the good gut bacteria as well as the bad, similarly to antibiotics. The gut microbiome plays a big role in the immune system.

Oncotype 13 Dx 7/31/2015, IDC, Right, 3cm, Stage IIA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 10/7/2015 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right Hormonal Therapy 11/16/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 4, 2017 01:10PM wallycat wrote:

Tim, has she had any side effects from the oregano? It sure affects two major pathways and I'm wondering if there were any noticeable side effects she may be having.

Great to see the tumor markers going down!

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
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May 4, 2017 02:19PM - edited May 4, 2017 02:22PM by Husband11

Her side effects are nothing but the typical one's seen by women on xeloda. Hand foot syndrome, some sleeplessness, fatigue at times, some neuropathy, low neutrophils and low platelets. Liver values are all normal. Tumor markers are one within normal range, and one just outside of normal range. She did have ascites, but they attribute that to blockage in her liver. Xeloda has a pretty short half life (less than an hour!) and clearance, and she only takes the oil of oregano during her off time.

What got me thinking the oil of oregano might be playing a positive role in her treatment, was that when she went off it for 5 weeks, her tumor markers pretty much stalled out. Seemed uncharacteristic to me, but was expected by the oncologist. But when she started taking it again, they started to move again, significantly the first cycle after restarting, and not as drastically the second cycle, but still better than the time without the oil of oregano.

No way to know for sure, maybe coincidence, but food for thought.

Concerned husband Dx 2008, Left, Stage IIIB, Grade 3, 7/14 nodes, ER+/PR+, HER2- Dx 5/2016, Stage IV, metastasized to liver, ER+/PR+, HER2- Chemotherapy Xeloda (capecitabine) Targeted Therapy Ibrance (palbociclib) Chemotherapy Hormonal Therapy Femara (letrozole)
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May 4, 2017 07:06PM solfeo wrote:

When my husband and son took it for the MRSA infection the only problem they had was stomach burning if they didn't eat something with it, but no problems with food. It's very strong and it tastes terrible. When used topically it will burn your skin if not diluted with a carrier oil.

Oncotype 13 Dx 7/31/2015, IDC, Right, 3cm, Stage IIA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 10/7/2015 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right Hormonal Therapy 11/16/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 5, 2017 01:36AM Heidihill wrote:

Thanks for sharing, Timothy, both the strategy and the wonderful results.  So happy for you. I have to hunt for some oil of Oregano now.

Dx 8/2007, IDC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 2/19 nodes, mets, ER+/PR+, HER2- (FISH) Hormonal Therapy 3/25/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 5, 2017 07:58AM - edited May 5, 2017 08:21AM by Husband11

If anyone is going to try this, I would strongly suggest that you make sure whatever drugs you are currently on, are compatible with oil of oregano. You don't want to risk a bad interaction.

From what I have read, oil of oregano is a strong inhibitor of cyp2c9 and somewhat of an inhibitor of cyp3A4. It is probably not safe to use with tamoxifen, because tamoxifen is metabolized by enzyme pathway cyp3A4.

It may well affect more pathways than those. I would also suggest that you have some way of monitering the success of this agent, because if it has no positive impact, I would not use it. No point complicating matters with an unneeded and possibly harmful agent like oil of oregano, especially for long term use.

Concerned husband Dx 2008, Left, Stage IIIB, Grade 3, 7/14 nodes, ER+/PR+, HER2- Dx 5/2016, Stage IV, metastasized to liver, ER+/PR+, HER2- Chemotherapy Xeloda (capecitabine) Targeted Therapy Ibrance (palbociclib) Chemotherapy Hormonal Therapy Femara (letrozole)
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May 5, 2017 08:15AM wallycat wrote:

Tamoxifen is the CYP2D6 .....but I agree, which is why I asked if she was having any other symptoms with the oregano.


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
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May 5, 2017 08:32AM - edited May 5, 2017 08:34AM by Husband11

From an article on tamoxifen metabolism:

https://www.ncbi.nlm.nih.gov/pubmed/21185724


Tamoxifen is a pro-drug that is metabolised to its active metabolites by the cytochrome P450 (CYP) enzymes including CYP2D6, CYP3A, CYP2B6, and CYP2C19. The cyp2d6 is often the subject of discussion in tamoxifen because of the genetic polymorphism that exists in the population with respect to this pathway. But that isn't to suggest it is the only pathway involved, just that its the one subject to genetic variance.

Concerned husband Dx 2008, Left, Stage IIIB, Grade 3, 7/14 nodes, ER+/PR+, HER2- Dx 5/2016, Stage IV, metastasized to liver, ER+/PR+, HER2- Chemotherapy Xeloda (capecitabine) Targeted Therapy Ibrance (palbociclib) Chemotherapy Hormonal Therapy Femara (letrozole)
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May 5, 2017 08:51AM - edited May 5, 2017 09:13AM by solfeo

I agree with Timothy that caution is in order because oil of oregano is a very potent substance and not usually used long-term. It's normally used temporarily to address an immediate health problem. I think the general recommendation is no longer than three weeks, but we did use it for a couple of months straight with no obvious adverse effects. It is possible that the benefits outweigh the risks in someone with Stage IV cancer, but as Tim pointed out there is no way to know that for sure, and the risks vs. benefits are going to be different for someone who is currently cancer free. You also run the risk of the cancer developing resistance, in which case the oil of oregano would have no effect when you might really need it if your cancer should recur.

I wouldn't personally use oil of oregano for prevention, but I might grow some in my herb garden and eat it regularly. Has anyone seen the commercial from one of the chicken brands (can't remember which one), where they advertise zero antibiotics? They say they add oregano to the chicken feed instead, which I find interesting because they must feel there is some evidence that it really works. As an antimicrobial, not for cancer obviously.

If you do choose to use oil of oregano for prevention I wouldn't take it continuously. Do some kind of on/off cycling to prevent resistance. And do take a high-potency probiotic to protect your gut.

Oncotype 13 Dx 7/31/2015, IDC, Right, 3cm, Stage IIA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 10/7/2015 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right Hormonal Therapy 11/16/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 5, 2017 09:00AM Husband11 wrote:

I liked the article where the rats fed carcinogens and freeze dried oregano at 0.3% of diet had only half the breast tumor volume. Doing some rough calculations, that might mean only a teaspoon of dried oregano a day would present a similar dosage in a small person. Sometimes I get that much oregano in a homemade greek salad dressing. I've never heard anything bad about simply consuming actual oregano. At least not in normal amounts.

Concerned husband Dx 2008, Left, Stage IIIB, Grade 3, 7/14 nodes, ER+/PR+, HER2- Dx 5/2016, Stage IV, metastasized to liver, ER+/PR+, HER2- Chemotherapy Xeloda (capecitabine) Targeted Therapy Ibrance (palbociclib) Chemotherapy Hormonal Therapy Femara (letrozole)
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May 5, 2017 09:08AM - edited May 5, 2017 10:49AM by solfeo

With regard to the CYP450 enzymes and tamoxifen, it has been suggested that CYP2C9 might also be a player in tamoxifen metabolism, in addition to CYP2D6. Quoted from one of BarredOwl's excellent posts:

"Abstract #2 http://www.abstracts2view.com/sabcs15/view.php?nu=SABCS15L_388"

The conclusion of Abstract #2 is particularly interesting (emphasis and bracketed text added by me):

"Conclusions: Polymorphisms in CYP2C9 and CYP2D6, but not [the] other enzymes or transporters [tested], contribute to variation in endoxifen exposure. If endoxifen exposure is validated to predict tamoxifen efficacy, personalized tamoxifen dosing algorithms should include CYP2C9, in addition to CYP2D6 and clinical factors, to improve efficacy and minimize side effects.""

CYP3A4 might not be an issue because tamoxifen itself is a 3A4 inhibitor. Just one more of a million things of which we will probably never see conclusive proof.

--------------

Updated: I can't get this post to format correctly for some reason, but BarredOwl's quote starts with "Abstract #2..." and ends with "...to improve efficacy and minimize side effects." Emphasis and bracketing are hers, first and last paragraphs are mine. I don't want to misrepresent what she said. The last part about CYP3A4 was written by me.

Oncotype 13 Dx 7/31/2015, IDC, Right, 3cm, Stage IIA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 10/7/2015 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right Hormonal Therapy 11/16/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 5, 2017 09:48AM solfeo wrote:

BTW, I had the CYP2D6 test done last year and I am an intermediate metabolizer. I have one normal allele and one completely non-functional allele. Upping my dose of tamoxifen to 40mg per day (20mg morning and night) brought my endoxifen level into what is currently thought to be the therapeutic range (again, not proven), but I avoid 2D6 inhibitors like the plague - in meds, food and supplements. My CYP2C9 was normal.

Oncotype 13 Dx 7/31/2015, IDC, Right, 3cm, Stage IIA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 10/7/2015 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right Hormonal Therapy 11/16/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 5, 2017 12:04PM Husband11 wrote:

My wife also tested as an intermediate metabolizer for CYP2D6. We had that done at Mayo back in 2009.

Concerned husband Dx 2008, Left, Stage IIIB, Grade 3, 7/14 nodes, ER+/PR+, HER2- Dx 5/2016, Stage IV, metastasized to liver, ER+/PR+, HER2- Chemotherapy Xeloda (capecitabine) Targeted Therapy Ibrance (palbociclib) Chemotherapy Hormonal Therapy Femara (letrozole)
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May 5, 2017 01:26PM Heidihill wrote:

Thanks for the warnings. I am an ultra rapid metabolizer. I also take a sage extract lozenge every night along with 10 mg of Tamoxifen, my daily dose. My endoxifen levels are fine with that combination. I was thinking of using the oregano oil for the rash I get on my chest every so often. The itchiness drives me crazy sometimes. If it will help with that and maybe prevent skin mets, great. Also as a topical it might help with sore joints and muscles and thicken my hair as well.

Dx 8/2007, IDC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 2/19 nodes, mets, ER+/PR+, HER2- (FISH) Hormonal Therapy 3/25/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 5, 2017 01:55PM solfeo wrote:

Timothy - I'm curious about your wife's case because I'm currently trying to decide if I should switch to an AI or not since I have recently become menopausal. I'm assuming she was taking tamoxifen or wouldn't have been tested. Was her dose adjusted as a result of the genetic test? Do you think her gene status played any part in her recurrence? I know that is a difficult question to answer but I'm interested in your experience and opinion if you have one. I was on it for seven months before I took the test and raised the dose, and I still have nightmares about what might have gone on in my body during that time.

Heidihill - You are only the 2nd ultra rapid metabolizer I have run into around here. The oil of oregano helped my son's acne as well. We diluted it with aloe vera gel rather than add more oil to his skin.

Oncotype 13 Dx 7/31/2015, IDC, Right, 3cm, Stage IIA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 10/7/2015 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right Hormonal Therapy 11/16/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 5, 2017 02:09PM Husband11 wrote:

We did nothing to adjust her dosage of tamoxifen. Had no knowledge of endoxifen level testing. It seemed in the meantime, the link between cyp2d6 genetic testing and tamoxifen performance was losing traction scientifically. She had a recurrence, spread to her liver, at about 6 years out. She was on tamoxifen at that time. Not sure why it failed, as her metastatic spread still tests strongly ER/PR positive.

Concerned husband Dx 2008, Left, Stage IIIB, Grade 3, 7/14 nodes, ER+/PR+, HER2- Dx 5/2016, Stage IV, metastasized to liver, ER+/PR+, HER2- Chemotherapy Xeloda (capecitabine) Targeted Therapy Ibrance (palbociclib) Chemotherapy Hormonal Therapy Femara (letrozole)
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May 5, 2017 06:01PM solfeo wrote:

I tolerate tamoxifen very well, which is why I even hesitate to make the switch to AI just yet.The test is still not standard of care and most people on tamoxifen don't get it. I didn't get it from my MO. I had to ask my naturopathic doctor to order testing, but I was able to talk the MO into the higher dose based on the results. Under duress, by telling him I had already started taking the double dose so it was too late to worry about added side effects I wasn't having, haha. No I don't recommend that approach, but after months of studying the subject I was comfortable with the risk. It did normalize my endoxifen so maybe he will be more open when the next patient asks for testing.

I understand the need for solid scientific evidence, but why is "better safe than sorry" never a consideration except of course when they are warning us away from a supplement or some other complementary treatment? Good solid proof is a rare entity in the world of breast cancer and I wanted to err on the side of caution.

One wonders why they ran the test on your wife if they weren't going to change course based on how it turned out. Were they planning to do something differently if she was a poor metabolizer?

Oncotype 13 Dx 7/31/2015, IDC, Right, 3cm, Stage IIA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 10/7/2015 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right Hormonal Therapy 11/16/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 5, 2017 08:00PM - edited May 5, 2017 08:04PM by Husband11

My wife was first diagnosed back in 2008. At that point in time, the genetic testing for the cyp2d6 genetic variants was far from the norm, not even recommended. Certainly no scientific consensus that it was meaningful. Not available in Canada where we live. It was Mayo Clinic I believe that was pioneering the genetic testing for it. So, while getting a second opinion at Mayo, my wife got the genetic testing done. I don't believe there was any mention of the availability of endoxifen level testing at that time. Intermediate metabolisers were not considered high risk for failure on tamoxifen, they were suggesting it was only poor metabolisers. And for years afterwards, the war of opinions waged as to whether the genetic testing itself had any validity on outcomes, or whether is was purely theoretical. If she had tested as a poor metaboliser, then she would have gone with an aromatase inhibitor. As well, at that point in time, there was no evidence that women on AI's lived any longer than those on tamoxifen. The choice of which way to go, would have only been clear if we found she was a poor metaboliser, and based on that we made the choice. The Doctors here put no weight in the genetic testing whatsoever.

Concerned husband Dx 2008, Left, Stage IIIB, Grade 3, 7/14 nodes, ER+/PR+, HER2- Dx 5/2016, Stage IV, metastasized to liver, ER+/PR+, HER2- Chemotherapy Xeloda (capecitabine) Targeted Therapy Ibrance (palbociclib) Chemotherapy Hormonal Therapy Femara (letrozole)
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May 8, 2017 09:33AM - edited May 8, 2017 09:45AM by solfeo

Thanks again for sharing, Tim. Of course the war of opinions rages on. I am of the firm opinion that it matters very much, and that it will eventually be proven. Meanwhile a lot of people will have fallen through the cracks, but hopefully I won't be one of them. I am sad and angry that anyone has or will.

I'll be on tamoxifen two years in November and I'm leaning towards switching to an AI then. I would rather put it off forever but I don't want to take any chances. My understanding about tamoxifen resistance is that it doesn't have to involve a loss of estrogen receptors. It just doesn't work anymore after a certain amount of time in some people, and in some it never works. If your wife didn't have quite enough endoxifen to kill all of her remaining cancer it may have only slowed it down for that 6 years, until it became obvious enough to diagnose. Pure speculation of course, but that is what I would be thinking if it was me.

I think it is awesome that you are here looking for ways to help and support your wife. My husband was not that way.

Oncotype 13 Dx 7/31/2015, IDC, Right, 3cm, Stage IIA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 10/7/2015 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right Hormonal Therapy 11/16/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 8, 2017 11:27AM LovingIsLiving wrote:

Solfeo, nice to see you here. I remember you were the first to respond when I came on this site!

I didn't have the enzyme testing. Two doctors didn't recommend it, because of osteoporosis they thought Tamoxifen would be safer for a while. Even with things like fosamax,etc., the risk of side effects and not knowing what's going on with my bone health was not worth the small benefit of arimidex or the like. I avoid all the food inhibitors as much as I can. The biggest one being black pepper, which I don't like anyway!

"The Lord is my light and my salvation; whom shall I fear? The Lord is the strength of my life; of whom shall I be afraid?" (Psalms 27:1). The stats below are mine. ♥ My brother lost his fight against breast cancer on Feb 27, 2017 ♥ Dx 10/1/2015, DCIS/IDC, Left, 2cm, Stage IIB, Grade 2, 1/22 nodes, ER+/PR+, HER2- Surgery 11/10/2015 Lymph node removal: Left; Mastectomy: Left Hormonal Therapy 12/28/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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