Saying No to Tamoxifen

Thanks Nan - I will look it up. I have heard a lot good things about David Servan-Schreiber too. It does amaze me that after all the money that is dumped into BC research we are still left with so few options from a conventional standpoint. 

Hi Barry - I think your right about the "opinions" part - I have seen numerous western doctors and numerous alternative doctors - each with their own take. Just in the past few days I have receivd conflicting information about DIM and I3C.... 

Also in the past two months since I was diagnosed and had surgery - I have definitely understood more as to the why. I am sure most of us have analyzed perhaps too much so the why and have started to put the pieces together - no doubt a multitude of factors that came together to cause our cancer - loading the gun so to speak.   

Thank you Bichonlvr03 - 300 minutes a week, that's five hours a week... I will definitely get my figure back too, with that much exercise! I can manage it while i'm off work, once i go back i might need to drop my hours to fit it all in, but if it keeps my brain functional it will be worth it. Good luck to your daughter and her studies.

Member:

Congratulations on having done so well on Tamoxifen. I am also happy to hear that you did not experience any negative side effects from it.

Since I turned down Tamoxifen early in 2006, I have a few months more to go before I can say that I am one of the people for whom Tamoxifen did nothing to prevent a recurrence in 5 years.

As I have said it before, I appear to be healthier now than I was before diagnosis, after turning my diet and lifestyle around 360 degrees immediately after being diagnosed: I am able to do a 1.5 hour of high impact workout every 2 days, I have beaten an extremely severe case of respiratory allergy I had been fighting since age 17, and for which I had seen scores of ENT doctors and taken a countless number of allergy drugs. AND I have also beaten a terrible case of irritable bowel, which I had been battling for over 15 years (also with all kinds of drugs). 

.....All that thanks to my high-vegetable/fruits/legumes/spices/natural juices diet, in conjunction with my carefully-researched supplements. Let me not forget to mention that I am keeping my CHEMOTHERAPY-INDUCED high-blood pressure perfectly under control through said diet and exercise program (though my doctor has prescribed "Hyzaar" just in case my blood pressure shoots up; I basically haven't had to use it, or very rarely).

As for Tamoxifen, I think I am living proof that the decision to take it or not is personal.

Tamoxifen did absolutely and virtually nothing for either me or the growing number of women who seem to be choosing to turn it down since, obviously, we did not use it. 

Though I am convinced that Tamoxifen is minimally effective in ABSOLUTE statistics (as opposed to relative statistics), I am also convinced that the majority of the women taking it don't have to fear any kind of harm from it (unfortunately, there is no way of knowing whether or not one is going to be the 1% that they say will develop another form of cancer from that drug).

Member - Thanks for you drop in. It is helpful to see both sides. 

I am not alive because of any placebo effect.  And I don't need sympathy for "going through all this."  I am THRILLED to be alive and well and to feel great.  And I know that with a 3cm tumor (that was 95% er/pr +, so highly hormonally driven) and a positive node, that I would not be these things without tamoxifen.  This isn't some kind of worthless sugar pill.  Its powerful medicine, which is why it can have some powerful SEs for some women.  But tamoxifen is also a cancer-slayer and I am so grateful I was able to take it and tolerate it.

 I am not alone.  I know a woman who has had metastatic breast cancer for over 20 years.  Never been NED.  Her longest period of lack of progression -- 7 years -- was while she was taking tamoxifen.  They could see the effect of this drug on her scans.

The mother of my oldest childhood friend died from breast cancer when we were young.  From everything I know about her cancer, she would have benefitted from tamoxifen if it was in use, which it wasn't back then.  She might be alive today to see her grandchildren. 

So glad to hear you are both doing very well. As has been posted here many times, the survival benefit for node negative Tamoxifen takers is a little over  3%. That means 97% of the Tamoxifen node negs won't live longer than the non takers.

In the node positives, Tamox has a higher survival rate A little over 8% than the non takers. That means 92% of the node positives don't live longer than those who refused the drug.

I'm not sure this low percentage counts as "positive reports." Ideally, we would like a drug that had a success rate in the double digits, at least.

Good luck to you both. It is so nice to see we can all be in this together.

There's a link in another thread saying the survival increase for node positive is actually 11% and for node negative its 5 to 6%.  Thats actually quite a bit.

Member please provide the exact link. Those stats would contradict the manufacturer.

I tried it for about four weeks despite serious misgivings.  It interfered with the Wellbutrin I take and I went into such a tailspin I couldn't work for two weeks.  I did not have cancer--I had ALH, and my mom died of breast cancer, so I'm high risk.

Maybe it was already mentioned somewhere on this thread, but there is a genetic test to see if you can even metabolize tamoxifen.  Some people can't, so there's really no reason to be taking it.  I was an intermediate metabolizer.  

I'm not overweight, I exercise and eat well, and I'm satisfied with my decision.   

Five miles . . .on Monday i ran 10 miles!  My five years since diagnosis passed last fall but in a week I will end five years of tamoxifen.  I remember how terrified I was to take that small white pill and now its a distant memory.

The link is in the thread on saying no to arimidex. 

Go to the thread on surgery and no arimidex, its there.

   I quit taking Tamoxifen after 6 weeks .. like another poster wrote, it interferred with my anti-depressant medications.  After careful thought and research of many months, I chose my emotional quality of life over this medication (against my doctors recommendations). Same thing with Arimidex.

   I was diagnosed 3 years ago at age 51 with Stage I, Grade 2, IDC.  My tumor was less than 7 mm, and I had a hysterectomy six years prior.  At the time of dx, my HRT was immediately stopped and I was put in instant menopause.  I had a lumpectomy with 6 mm margins all round and 38 radiation treatments.

My choice is a personal one .. and I never recommend it to others.  However, I have no qualms about sharing my choice and why I made it.  But, had I been younger than 50 and Stage II or above, I may have tried to stay on the medication. 

Bren

I thought the SEER data was the most recent.  True, Tamoxifen and AI's were created initially to treat Stage IV cancer.  The results were astounding and the ensuing thinking was .. let's try this as a preventative measure.

If I had a positive node and Stage II, I would have stuck it out on Arimidex.  My benefit was about 4% at Stage I, no nodal involvement.  Not enough for me to sacrifice the stability of my depression for the following five years.  The severe nausea and vertigo from the Arimidex could possibly have been treated with other meds .. or a very slow titration of the Arimidex.

For women who don't have other health conditions that interfere with taking Tamoxifen or an AI, my recommendation is to take the homonal therapy.  At least give it a try.

I'll see if I can find a link to the SEER study.

Bren

Bren, I think you made the right call.  It really isn't worth your suffering from depression when you were only stage I.

 Maybe I shouldn't be here but I get very concerned when there is disinformation about life-saving treatment.  For early stage women, as I have said, it really is a tougher call but I would hate to see women who were node positive be scared off from this important treatment.  And I think when women are making this difficult decision its helpful to hear from someone like me who has not had a terrible experience.  I'm about to switch to an AI and I LOVE posts from women who haven't had a bad time on AIs. 

 I'm not "trying to justify" my decision to take tamoxifen.  It was the easiest decision in the world for me and I have never had any doubts about it.  But when someone says that an 8% benefit in survival isn't worth it, i have to strongly disagree.  8% is a lot, and I'm grateful for it.