For those who refused Tamoxifen x-posted Hormone tx

Twin ... do you know what the benefit of Tamoxifen is for you?  For me, it wasn't a lot .. about 3 or 4%, but I think you're younger than I am.  I opted out based on the benefit for me and the fact that I had a total hysterectomy.  I had the same SE's you do .. and hung in there for 6 weeks.  For me the vomitting daily was the worst .. and I couldn't live like that.

It's such a hard decision to make.  I'm happy to read you can manage the depression symptoms with diet and exercise.  I wasn't able to.  I needed medication for it.

I poured over the literature, statistics and percentages for months to find just a little peace with my choice.

Best of everything to you,

Bren

Ask specifcally about taking Tamox when Her2+.  Do a GOOGLE search for numerous articles and questions your oncologists.

http://www.medscape.com/viewarticle/407813_5

I presented with mets and am ER/PR positive. As a premenapausal woman (I am 44), Tamoxiphen is my only hormonal therapy option. I am glad I have been stable on it for one year. When hormonals fail (and they ultimately will) it will be chemo for life for me. I am fortunate--no real side effects. Just happy to be here and hope to stick around awhile.

Here is some information on risk reduction with Tamoxifen for Her2+ cancer.  See last sentence.

Note that this study was done on tumors before herceptin was used as adjuvant therapy. 

Does hormone receptor (HR) positivity affect the prognosis in breast cancers with human epidermal growth factor receptor 2 (HER2) overexpression?

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<!-- content body -->Sub-category:Prognostic Factors Category:Tumor Biology and Human Genetics Meeting:2009 ASCO Annual Meeting Abstract No:e22091 Citation:J Clin Oncol 27, 2009 (suppl; abstr e22091) Author(s):Y. Lee, J. Sohn, B. Park, H. Chung, C. Suh, S. Kim, J. Koo, J. Kim, H. Choi, Y. Kim; Yonsei University College of Medicine, Seoul, Republic of Korea; National Health Insurance Co. Ilsan Hospital, Goyang, Republic of Korea

Abstract:

Background: Biologically, there is an unclear issue about the role of HR positivity in HER2 positive breast cancer. These HER2(+)/ HR(+) pts were grouped into luminal B type apart from HER2(+)/ HR(-) pts in molecular profiling. However, from the clinical point of view, these pts have been categorized and been treated as either the only HER2(+) disease regardless of HR status or vice versa. Thus, we investigated the impact of HR status on clinical outcomes in HER2-overexpressed breast cancers. Methods: We retrospectively reviewed medical charts of HER2-positive breast cancer pts who underwent curative surgical resection from 1996 to 2001 in the Severance hospital, Korea. Demographic comparisons were performed by Chi-square tests. Tumor size, nodal stage, TNM stage, HR status, and adjuvant tamoxifen use were included in the Cox proportional hazards model. Results: Among the total 174 HER2-positive pts, HR (n=93) was positive in 53.5% (n = 93) and HR-positive tumors were more likely to be premenopausal (73% v 52%; P=0.01) and well- differentiated (grade 1or 2; 77% v 62%; P=0.04). There were no significant differences according to HR status in terms of tumor size, nodal stage, TNM stage, operation methods, and chemotherapy regimen. In these HER2-positive pts, the 5-year disease free survival (DFS) was longer in HR(+) pts than in HR(-) pts (DFS; 82.9% v 61.5%; P= 0.01). In a subset analysis, the 5-year DFS of HER2(+)/ER(+) pts without adjuvant tamoxifen (n=26) was not different from that of HER2(+)/ ER(-) pts (DFS; 57.7% v 61.5%; P= 0.32). However, the 5-year DFS of HER2(+)/ ER(+) pts with adjuvant tamoxifen was significantly prolonged compared with that of HER2(+)/ ER(-) pts (DFS; 91.5% v 61.5%; P< 0.001). In a multivariate analysis of DFS, tumor size and adjuvant tamoxifen use significantly affected DFS with an adjusted hazard ratio of 2.56 (95% CI, 1.2-4.9; P= 0.01) and 6.58 (95% CI, 2.8-20.3; P< 0.001), respectively. Conclusions: In an analysis of HER2-overexpressed breast cancer, the presence of HR itself did not affect the prognosis. However, most of the survival benefit seems to be driven from adjuvant tamoxifen therapy not the HR status itself.

No, tamox also seems to prevent mets

Hey, twinmom, I usually stay away from Tamoxifen threads because they can get pretty toxic, as you've seen. But I want to share my little bit of experience with seven weeks of Tamoxifen. I was 44 when I started it. I, too, lost my brain on it. (As well as 15 pounds, but that's rare!!) I was depressed and couldn't recall faces, names, and important stuff I needed for work. It was horrible.

I hadn't taken chemo (talk about potential side effects!!!) but felt I needed some systemic form of treatment. Within a week of stopping tamoxifen, my brain switched back on. It was dramatic. So, on to ovarian suppression and AIs.

I took AIs for 4 years. A year after stopping them, I found a new primary in the othe breast. My onc and I feel it was there at the very beginning, and was suppressed by the AIs. So, back on AIs for two years, then I chose to stop them due to side effects. So far so good, three years later...

It's all very personal and individualized. You really have to examine not only your risk factors and data like tumor size, grade, oncotype dx if that was done, but you also need to examine your value system. what's important to YOU. And that's where people tend to come up short here--everyone's value or belief system is steeped in their personal experience, and no one's value system will exactly fir another's, even though there's an expectation that it will, at times.

Best of luck,

Anne

Twinmom

https://www.adjuvantonline.com/register.jsp

Register for the program as if you were a medical professional.

I just registered for Adjuvantonline. When I ran my stats for the 10 years it gave me an additional 7 out of 100 will be alive with having combined therapy, and 5 out of 100 just taking the hormonal therapy. It really makes me think about going through so much for such a small percent with chemo.

Karen

I chose to induce menopause   & take Femara.  I did hear from a personal friend who had bc and was very upset her doctors did not recommend taking an AI or tamoxafin.  She now has bc in the other breast 5 years later.  I believe all of us want to do the best we can so that we do not get a reoccurrence.  My diagnosis last June from the start was pretty bad--ibc, 3.5cm tumor & bone mets.  A year later, I'm doing well.  Having stage IV cancer; I don't believe I'll ever be as healthy as I was before this but I'm certainly surviving this with a lot of help.

Terri

I tried to cut and paste but it didn't work.  Just google "benedryl and Tamoxifen"  and look for the Pharmacytimes.com article.  It has a whole list of CYP2D6 inhibitors, benedryl being one.  I didn't read them but noticed some articles re: this on google where the people are saying their docs told them to take benedryl.  So, maybe the jury is out.  But the Pharmacytimes article seems a good place to start.

My ex-onco (I don't currently have one since in my town they are all in the same group) REFUSED to order the CYP2D6 test...said "It works for everybody" .  I went to another doc who did order the test...and I am missing one of the alleles.. I take a bunch of different natural AIs like melatonin, chrysin, grape see extract.  Also take DIM and I3C and a lot of other things.

Good luck with your decision.  I have a prescription for tamox that has been sitting in a drawer for over a year.  

p.s.  Forgot to say I had a clear MRI in April 2010 of both breasts (I had reconstruction though Dr. Khouri in Miami...a whole 'nother story of alternative I'm glad I chose)

dx 11/07 DICC; left mast Dec 07; nodes 1+/19-; ER+/PR+; stage 2A; estrogen lowering diet instead of Tamoxifen; fat grafting reconstruction with Dr. Khouri completed Aug. 09. Very happy with results!

Wisconsin Randi, welcome, and I'm glad to hear you had a good experience with Dr. Khouri - there is a thread in the Reconstruction forum called micro fat grafting where people are talking about him. If you have a few minutes, I'd love to hear all about your story, either on that thread or elsewhere! I'm thinking about working with him (if I end up having to have a mastectomy). Thanks and sorry to post off topic! (Oh, and great reminder about beans being anti-estrogenic!! I need to eat more of 'em!)

Twinmom77...I also have twins and so do two of my brothers.

I think I have been on melatonin for over a year.  I take 20 to 25 mg a night.  When I was diagnosed with BC, I had been waking up every hour for a long time.  Sometimes I would look at the clock and find I had only slept for 15 min.  I used to be able to sleep well past noon if I wanted to..but then we moved to a new house with giant windows in the bedroom and I think I gradually lost the ability to sleep.  Now if it is bright outside at night, I wear an eye mask for total darkness.  If it is dark enough outside, I cover the clocks with towels and lay the portable phone on its face so there is no light reflecting in the mirror.  I don't know if longterm use is a problem.  I was just assuming that as long as I can tolerate such a high dose that I would since it is an AI.  I figured if I start being groggy the next day I will cut back.  The fact that I wasn't sleeping which meant my body wasn't manufacturing melatonin may have been a contributing factor to the BC along with the extremely low D3 and almost no progesterone which I now supplement.

All that and the melatonin is helping me sleep much better AND melatonin is an AI.  My estradiol has dropped from 32 to 28 to 15.  I also take chrysin, grape seed extract, krill oil and about 35 other things.  My D3 was 20 and is now 60.

wisconsinrandi-  thanks for the info, especially the karenhurd.com site.  It is very informative, unbelievable Poison Rug story!!  As my Onc is not comlementary or alternative at all, it is up to me to research whether or not I want to take Tamoxifen, and what more healthy alternatives are available to suppress estrogen.  I am 54,  perimenopausal, will probably be kicked into permanent menopause by the chemo.  Next I will do rads.  Unfortunately my cancer location is very close to the chest wall on the left (under breast where bra band would be).  I know I am at risk for some heart and lung damage from the radiation "kissing" the heart and lungs. JOY!  I also have a non symptomatic auto immune blood condition, which caused 3 miscarriages due to blood clots.  As Tamox can cause heart problems, blood clots and strokes, I am worried that the SE might be more risk than the small benefit I might get.  Are there tests that can determine whether we are officially in menopause?

Whoa, I think that you only got partial information from your onc.  When they compare survival stats between er+ and er- women, they are assuming that the er+ women are taking a hormonal treatment.  Otherwise they wouldn't have any kind of sample size.  So if survival stats are the same for er+ and er- women, than not taking tamoxifen would lower your prognosis even lower than the er- women.  The fact is that under the age of 35 you are more likely to have a more aggressive disease.  You are also more likely to have a disease that responds to treatment.  I'm assuming you did chemo?  

I don't know why don't think the difference between 30% and 15% is helpful.  Thats a pretty significant difference.  Huge, actually.   Really, I can't see the argument for not trying it.