tamoxifen...risky?????

Hi Cinderella,

Check out Brevail.......I've been taking it since May - 2007.  It is a natural alternative to tamoxifen, aromasin, etc.....There is plenty of information on this board about it as well.

God bless,

Genesis

Dear Cinderella,

After my Mom was diagnosed with DCIS 5 years ago, they did a lumpectomy and removed 3 sentinel nodes which were "clear".  The Onc. wanted her to go on Tamoxifen.  I did extensive research on the "stats", looked at the studies of "disease free" survival taking the drug vs. not taking the drug, and discovered THERE WAS NO DIFFERENCE!!!!  I also looked at the side effects, and this site was very helpful  www.askapatient.com .  Taking this drug did not increase survival time.  So it was a no brainer after seeing the % of significant adverse side effects the ocurred while using this drug.  You've got to dig deep to find the stats, but I assure you the drug companies will try and sku the results in misleading literature.  Kind of how Bill Clinton tried to re-define the meaning of "is". 

If I had breast cancer I would be doing what Genesis did.  She knocked it out in 30 days or so. 

Sincerely,

Lisa

The NSABP followed women with ER+, node-negative tumors and found those who took tamoxifen to have a greater overall survival rate of 3% at the 10 year mark. Given that the study began in 1989, I see it as highly probably that the survival rates of the tamoxifen group would have been higher if those women

1) had been tested for their CYP2D6 profile so that only those who can actually metabolize the drug were followed,

2) were not given SSRI antidepressants (very common) which effectively make tamoxifen a placebo and

3) were told to avoid grapefruit juice, pomegranate juice and other foods which also render tamoxifen ineffective. 

IMO, Tamoxifen is likely to offer a greater survival benefit than 3% if it's given to those who can metabolize it and who don't take drugs or foods that inactivate it. 

If you're premenopausal and have an ER+ cancer, removing or suppressing your ovaries can have a significant survival benefit as well.  About equivalent to taking tamoxifen. Having both therapies can give additive benefits. I 'borrowed' this analysis from Edge:

http://www.websitetoolbox.com/tool/post/nosurrenderbreastcancer/vpost?id=2398817 

 Playing the Numbers

o The real question is what degree of benefit do you get from oophorectomy (or ovarian suppression, which is clinically comparable in benefit)? In the most typical adjuvant setting, at five years the disease-free survival of OO + TAM (oophorectomy added to tamoxifen therapy) for ER+ women is 83% compared to 61% for observation (no therapy) alone, a gain of 22%; at the same five years for ER+ women, the overall survival would be 88% for women on OO + TAM compared to 74% for women on observation alone, a 24% added benefit. The numbers decline a bit at 10 years given the continued residual forward risk of hormone-positive disease, but still significant, and impressive: 10-year DFS stands at 66% for OO + TAM compared to just 47% for observation alone (a 19% benefit), while 10-year OS stands at 82% for OO + TAM compared to 49% for observation alone (a 33% benefit) [data from the in-press pending publication findings of Richard love's team at Ohio State: Survival After Adjuvant Oophorectomy and Tamoxifen in Operable Breast Cancer in Premenopausal Women, to appear in JCO, forthcoming].

  By comparison, according to t he latest data from the EBCTCG (Early Breast Cancer Trialists' Collaborative Group, tamoxifen alone reduces the annual breast cancer mortality rate by 31% at 5 years, while ovarian ablation (oophorectomy) or ovarian suppression (via Zoladex or Lupron) alone was statistically as effective, reducing the annual breast cancer mortality rate by 29%.

o Bottom-line:
Therefore to take one salient comparison, namely overall survival at 5 years, an ER+ woman can receive:
+ a 31% reduction in the risk of mortality from tamoxifen alone,
+ a 29% reduction in the risk of mortality from either oophorectomy alone or ovarian suppression alone,
+ a 88% reduction in the risk of mortality from TAM + OO, that is from oophorectomy added to tamoxifen therapy.

 http://www.nlm.nih.gov/databases/alerts/tamoxifen.html

The adjuvant administration of tamoxifen has significantly improved disease free survival and overall survival in women with early stage breast cancer. In 1981, the National Surgical Adjuvant Breast and Bowel Project (NSABP) initiated Protocol B-14 in order to determine the efficacy of tamoxifen in women with primary breast cancer with histologically negative nodes and estrogen receptor- positive tumors. Two thousand eight-hundred and ninety-two patients were randomized to receive either tamoxifen or placebo. The results initially published in 1989 (1) indicated a significant prolongation of disease-free survival in favor of the group receiving tamoxifen treatment. Updated results from this study provided by NSABP indicate that the tamoxifen treated patients have a 10-year disease-free survival of 68% compared with 57% for the placebo-treated group (p<0.0001). There is a concomitant improvement in overall survival in favor of tamoxifen, 78% vs. 75% (p=0.037). This beneficial effect of tamoxifen was also noted in other randomized trials (2,3) and has been confirmed by a worldwide meta-analysis of tamoxifen trials performed by the Early Breast Cancer Trialists' Collaborative Group (4). 

The big IF on taking tamoxifen is whether the person has the version(s) of CYP2D6 to metabolize it. The second is whether they can avoid eating foods or taking drugs that block metabolism of tamoxifen.

If you're in that group, an ooph is likely to be about the same as taking tamoxifen. If you're not in that group, an ooph is likely to be much better than tamoxifen.

If you take the Oncotype DX test, those who score low appear to benefit from tamoxifen and not from chemo. If you score high, and are her2+, your benefit will come from chemo and hormonal therapy doesn't seem to affect outcome significantly.

A blanket statement that tamoxifen is ineffective glosses over the cases where it has been shown to have a significant effect. It's not the drug of choice for everyone. Today, anyone of us can get genetic testing to help us determine which drugs, if any, are likely to give us longer survival.  

We don't all have just breast cancer. We have highly individualized cancers of the breast. The closer we can look at it, the better we can see specific characteristics that can be treated.

Yazmin and BBS,

To add to the inexplicable there is a woman who has posted here, treated at MDA for ILC by a major ILC Guru. He put her on Tamoxifin as her first line post tx hormonal. She is well past menopause. He refused to do the test even after she pointed out that the MDA website had extensive info about it! We do not understand this. Beth Yes, one can have it done independently, but what  about the thinking behind the refusal??

I have never seen any studies that Tamox fuels Her + BC . A quick google did not confirm. Can you give us more info? Beth 

o Bottom-line:
Therefore to take one salient comparison, namely overall survival at 5 years, an ER+ woman can receive:
+ a 31% reduction in the risk of mortality from tamoxifen alone,
+ a 29% reduction in the risk of mortality from either oophorectomy alone or ovarian suppression alone,
+ a 88% reduction in the risk of mortality from TAM + OO, that is from oophorectomy added to tamoxifen therapy.

Are these relative or actual reductions in risk?  Sorry, as I have said before, I am a bozo at interpreting statistics.

Regarding Brevail, am I understanding that it is actually made from flax seeds?

Brevail provides lignans that are concentrated and standardized from flaxseeds. Brevail was formulated to supplement lignans lacking in the diet, resulting in a gentle return to balance between body and nature, just as nature intended.

Would it not be more healthful to actually grind your own fresh organic flax seeds, and supplement with fresh organic ground sesame seeds (also rich in ligans) than to take these substances in a processed Brevail pill? 

Little - G,

Why do you think Tamoxifen is a "big money maker" for your onc's office?  It's a rx, so you get it from a pharmacy not your onc.  Plus, it's only available generically and it's cheap.  I pay about $6 a bottle without insurance through an online company and before that I paid $14 a bottle at Costco (also without insurance).  My onc has never prescribed anything for me to make a buck.  If you think you onc doesn't have your health and well-being in mind, then maybe you need to find another one.  

Cynthia 

G,  

I agree that oncs make money on cancer and thank goodness for that or where would most of us be?  I'm thankful everyday for my onc because I know I personally couldn't work in a profession where many of your patients die.  But, who doesn't make money on disease?  Those of us who have it (unless we write a book or something about our experience, lol)!  Whether it's the local health food store, or the ACS, or the pharmaceutical companies, if there's money to be made, then someone will make it.  I agree that the pharmaceutical companies make too much money, especially after I learned that I couldn't afford some of the antinausea meds.  But, I'm still grateful that the meds exist for those who need them (which I fortunately didn't).  And, they aren't making money on my Tamoxifen rx, lol.  I'm so glad it's now generic, and I hope if I ever need an AI, that there will be generic versions by then, too.  The patent has expired on many of them so it's just a matter of time. 

As for chemo, I would much rather my onc make money on it than a local hospital.  For one thing, my onc charges less (lower overhead) and I didn't have to have chemo in a hospital.  

Tamoxifen isn't for everyone (what is?).  I personally feel that the 30+ years of research speaks for itself, but even so I was very nervous about taking it.  Ibuprofen was the only medication I had taken in decades prior to my dx.  To have to take a pill with potentially dangerous side effects was difficult, but I finally decided that (for me), the potential benefit outweighed the rare risks.  As you say, we all have to decide for ourselves.

Good luck on your journey.   I wish you the best!

Cynthia 

Well, my late husband was a rad onc and he,we never got a paid trip to anywhere. Before we married, he did get a free dinner in Belgium from Siemens because his dad was a radiologist.He was there as a student backpacking and living in hostels.It was so unique he talked about it for years.I do agree that results should be in absolute terms and in terms of overall survival and DFS. The tumor that shrinks 50% is really only of intellectual interest unless that means the patient survives longer- longer like more than ? months able to enjoy a life.Too many chemo therapies seem to have increased survival of weeks or fewer than 6 months.Beth

I've received a lot of "loot" from drug reps in my day. From pens and pads to books and fabulous wine dinners. Never a trip anywhere, I'm just a lowly NP.

But I never once felt obligated to push the drug reps product over another drug, because they gave me lunch. I gratefully accept their swag, as well as their information on their drugs, but that's where it ends.

I'm actually more annoyed by insurance companies dictating my drug choices because of cost to the patient.

Back to the Tamoxifen topic, I think (and I haven't read fully the links provided above, sorry) what happened with Tamoxifen was that women who were on it longer than 10 years may have had a resurgence of their cancer. That's why it's no longer advised for that long a time period.

Anne

Good Morning,

Did someone say that there are certain foods that we should or shoudn't eat while taking tamox?

I think I read it but can't find the thread....

Thanks...Kosh...

(ps...still deciding on whether to take this stuff)

Kosh,

You cannot eat grapefruit when taking tamoxifen.  Somehow it counteracts it.

Take Care

Trish

My wife uses I3C after I did some research on Tamoxifen and it's side effects. I also found some rather interesting spins on their statistics. Kind of scary, actually. Here is a link http://www.raysahelian.com/indole3carbinol.html  to some of the studies done for I3C, and the info on the stats that the drug companies and oncologists are familiar with.

"The National Cancer Institute's Breast Cancer Prevention Trial reported that

there was a 49 percent decrease in the incidence of breast cancer in women who

took tamoxifen for five years."

That's stunning. If your doctor told you that using tamoxifen cut your chances of

getting breast cancer by 49%, would there be any question in your mind on

whether or not to use it? Not in mine - at least until I talked to Benjamin Disraeli.

If you look past the statistics, the truth is that according to the study, your odds of

getting breast cancer without using tamoxifen was only 1.3%, and with

And for that meager sixth-tenths of one-percent difference, we now need to

consider that tamoxifen can cause cancer of the uterus, ovaries, and

gastrointestinal tract. A study at Johns Hopkins found that tamoxifen promotes

liver cancer, and in 1996, a division of the World Health Organization, the

International Agency for Research on Cancer, declared tamoxifen a Group I

carcinogen for the uterus. In another abruptly curtailed NCI study, 33 women that

took tamoxifen developed endometrial cancer, 17 suffered blood clots in the

lungs, 130 developed deep vein thrombosis (blood clots in major blood vessels)

and many experienced confusion, depression, and memory loss. Other

permanent damage includes osteoporosis, retinal damage, corneal changes,

optic nerve damage, and cataracts. In short, the half percent of those who

received a reduction in breast cancer by using tamoxifen traded it for an increase

in other cancers and life threatening diseases. A half percent in real world terms

is vastly different from the 49% "statistic-ed" improvement cited in the studies -

and hardly worth the increased risk

I3C is more effective in preventing the metastasis of breast cancer that tamoxifen

without the side effects.

Erick Carpenter

erick@carpenter.net

Erick, I use DIM (used to use I3C) until I read research indicating that DIM may be better.  Here is one link

http://www.dimfaq.com/site/I3C-safety.htm 

Best wishes to you and your wife! 

Thanks, I will! We were pretty impressed with the results of I3C....

Not totally sure of the following link, but the review had some interesting evidence behind it. See what you think.

http://www.lef.org/magazine/mag2002/jan2002_report_i3c_01.html 

But regardless of your conclusion, I hope the best results of your decision... If you want to know what my wife did, we set up a web site (a personal one) and you can download what she did for treatment, the website is....

http://unwraptheribbon.com/

Cheers!

Erick