Does anyone say no to Tamoxifen

fairy49

Hi Britt! So glad to "hear" from you, its been a while! Glad to see you are doing well! DIM is a natural estrogen metabolizer I have a bunch of links but I am at work today so I can send them when I get home, I will PM you, however in the meantime here is sometime to start!
Have a great day!

http://www.dimfaq.com/

Lorraine ox

Britt

thank you so much, Lorraine!  Looking forward to hearing from you and glad you also seem to be doing well!  Have a great day!

Big hugs,

Maria 

fairy49

Actually found em!! ha!

http://www.dimfaq.com/index.htm

  

http://www.diindolylmethane.org/molecular_biology.htm

  

http://www.dimfaq.com/site/cancer.htm

  

http://diindolylmethane.blogspot.com/2007/06/dim-clinical-applications-and-research.html

  

http://www.dimfaq.com/site/abstracts3.htm

  

http://www.diindolylmethane.org/cliinical_applications.htm

  

http://www.energeticnutrition.com/vitalzym/dim.html

  

http://www.vrp.com/articles.aspx?ProdID=art477&zTYPE=2

  

http://mct.aacrjournals.org/cgi/content/full/6/10/2757

  

http://www.saintfrancis.com/breastServices/index.aspx?chunkiid=104670

  

http://www.brevail.com/index.html  - new product

Britt

thank you Lorraine!  They actually sell Brevail in my town - do you know how much it costs?  Will insurance cover it?

fairy49

Hi Britt!

I am not sure how much it is, but pretty sure its not covered by insurance

Britt

Hi Lorraine -  thanks!  At least my med onco believes in holistic/alternative treatments also - she is very into yoga and qi qong (sp?) and proper nutrition.  So we shall see.  I am sure the cost will be worth it is she agrees it is a viable treatment.  Have you tried it yet?  Have you EVER taken tamox?

rgiuff

Britt, I'm with you on the ovary and AI thing.  The AIs I don't like because they almost completely deprive your body from making any estrogen and I've read too much about the side effects to bones and sex life.  The oophorectomy thing I would never, ever do unless they were diseased.  From what I've read, the ovaries continue to put out some hormones, such as testosterone, of course in much smaller amounts, even after menopause.  And from what I've read, the surgical menopause can be a really tough thing to go through, and I'd worry about long term effects on the body of being so hormone deprived by either the AIs or ovary removal.  And like you, I'm worried about aging prematurely.  I am taking tamoxifen for the past 7 months, but am having horrible hot flashes as well as mood swings and sexual difficulties.  I keep planning to go off of it, but part of me is thinking that I was perimenopausal before BC happened and was having some of these same symptoms, although not as bad.  So I wonder if maybe I'd be experiencing them anyway even without tamoxifen.  And I do occasionally use some estrogen cream for the vaginal area, which I feel safe doing because I figure the tamoxifen is there to keep it away from my breast cells.

My plan is to go off the tamoxifen for awhile to see if the symptoms let up, then I'll know if that is the cause of them. And also I don't want to do 5 years of it because I'm too worried about uterine problems, which could lead to hysterectomy, which further could impact on the sex life.  And heart attacks and strokes run in my family, so I don't want to increase my risk of these occurring.  I'm also considering going the alternative route, but don't know if I can afford it.  And since I was only Stage 1 <1cm, ER, PR+ HER- with no node involvement and a low oncotype scorre, I feel that I do have the luxury of weighing all these options.

PS73

This is a really helpful thread.  Although I am not there yet, I am prescribed to go on tamoxifen for atleast two years. Onc says five but I am pre-men and I want children. I have heard a mixed bag for tam but this is the first about new cancers popping up because of it. I hate that the treatments are so awful.  Does anybody know long term stats out past ten years, or a site that I can look at for it?  Everything Ive seen has been 5-10 yr stats.

 Crystallady- Im so sorry to hear about the reoccurance.  Stay strong.

Merilee

Anyone taken Bevail?

Member_of_the_Club

Replying to Vivre: Of course losing weight helps, and watching what you eat.  But it only goes so far.  The cancer will come back or it won't and it doesn't really care how healthy your habits are.  I know two women who died of breast cancer in the past few months -- both were thin and fit.  I wish that was all it took, but it isn't.

lisasayers

Taking drugs only go so far as well, as I've talked to many women who have taken Tamoxifen and still had it come back.

It's a personal choice and I'll stil with the exercise! 

Nobody can say one way or the other that healthy habits do not affect outcome, as they have not taken the time or money to study it long enough. 

AND, one of the many problems with the so call clinical trials regarding Tamoxifen, for example, is that the results aren't accurate!  Women who have stopped taking the drug, but who have not told their doctors, are still being included in the results.  Or women who alter the amount they are taking, etc. 

Besides...healthy habits have no bad side.  They are only beneficial!

Be well and happy and make it a great day!

Texgirl

I will preface this by saying that I know we each have a right to our own opinion ..our bodies are our own ,etc. BUT, I have to shake my head in wonder that so many women on this thread and others will refuse the options that the medical establishment have worked so hard to provide....that women who are triple neg. would just be thrilled to be able to take... all because they have READ studies/reports/web sites that give them the info they want to hear. Yes, I know not all sites are bad as well as not all alternative treatments  are misleading....but ladies are you seriously NOT taking a treatment because of your "fears" of what MIGHT occur ? We each process drugs,etc. differently. What happens to one may not occur w/ another. I am sure you have no death wish just as I ..but few of you have  medical or scientific background to help you discern vital and critical data.. to actually interpret the studies presented or to even know when a "study " is presented if it is a legitamate one....even as an RN...I don't have that ability so I will not over ride my physician's guidance in my cancer treatment...Please don't sidetrack your treatment....you only get one chance to hit it the first time...make it really count. Yes..eat right, exercise and take supplements but don't omit something may well eliminate your cancer.

vivre

Texgirl-eating right, exercising and taking supplements IS doing something that will eliminate cancer. The statistics and the proof is out there. Saying, it is wrong to follow something just because we READ it, is the same as what the doctors do. They READ that some study says that a drug does this and that, and they choose to tell their patients to follow that protocol. Just because we read different information, does not mean we are putting our health in jeopardy. We just happen to believe that what we read makes sense. By the way, I have read the studies about tamoxifen and the AI's. The proof in these studies is skewed and inconclusive. You might want to check them out. Breastcancerchoices.com has lots of links.

Merilee

I have the personal experience of feeling poisoned while taking Tamoxifen. That is why I know longer take it. I had very high hopes for it until it made me very sick. Then I started reading up on it, to  learn that I am not alone. As far as understanding the results of studies, I think you may have underestimated this group of ladies. The whole point of us looking at them is to be as informed as we can and then make decision.  I actually know more about Tamoxifen than my last ONC did. That was deomonstrated to me very clearly at my last appointment with her.

So as far as shaking heads, I shake mine at how much I was NOT told before being prescribed Tamoxifen.

snowraven

I see the same nay-sayers are here who visited the thread "Does Anyone Refuse Hormone Therapy Altogether". As Merelee has said, we are simply trying to get as much information as we can so we can be well informed.

Tamoxifen has some fairly serious side effects, such as blot clots and uterine cancer, for those unfortunate enough to suffer this. Most women have lesser SEs, or if they are lucky, few to none. However, the journal, Cancer March 1, 2007, points out that in a study of 2816 women, about one third stopped taking Tamoxifen in only two or two and a half years, because they couldn't stand the SEs.

So asking about SEs seems to be a valid question.

Of course, there are other medications that can be taken as well as Tamoxifen. Arimdex is one of them. It has far few serious SEs than Tamoxifen, but the downside is that it can only be prescibed to post-menopausal women. It also has some SEs pertaining to bone breakage or bone loss, and in studies, the SEs results were found to be statistically significant for those on Arimidex--meaning it is a real concern. Usually, you are monitored for bone health and urged to take more vitamin D and calicium. Weight bearing exercise would also help.

These are the bare facts. What a woman decides to do is based on her onc's recommendations, her type and grade, etc, of cancer and how she feels.

There are also personal circumstances. For instance, if you take a long list of medications, these can interfere with the effectiveness of Tamoxifen.

There has been a lot of discussion since the weekend after a paper at a clinical onoclogy conference in Florida. The results have been in the news. I don't have that paper, but I can refer you to the journal, Pharmacy Times, which has several articles on how the enzyme CYP2D6 is necessary to metabolize Tamoxifen and the different drugs, including OTCs, which interfere with that metabolization. The 3 biggies are of course Paxil, Prozac, and Quinidex (quinidine). That is because they are CYP2D6 inhibitors--they reduce your CYP2D6 to practically nothing, and so there is no more enzyme to metabolize the Tamoxifen. Therefore it isn't as effective as it should be. And that means you are more at risk for getting cancer again, even though you are taking your meds as directed! Personally, I have to take Paxil.

There are a whole host of other meds that lower CYP2D6 and therefore interfere with taking Tamoxifen, such as a common OTC antihistamine, Benedryl. Also anything with codeine, such as Tylenol no. 1 or 3, or Darvon. I refer you to Pharmacy Times for the full list--it's very long. Two articles of particular importance are "Get to Know an Enzyme: CYP2D6" and "Drug Interactions: Beware of CYP2D6 Inhibitors in Patients Taking Tamoxifen". They are both under "Drug Interactions" on the web site.

So if you have to take any of these drugs for other conditions, that would be a valid reason to re-evaluate whether you are a candidate for taking Tamoxifen.

There may be other reasons. If you are happy with Tamoxifen, wonderful! But it may not be the right choice for everyone.

Christine

snowraven

I might also add I was a researcher in a hospital working with various studies and I am qualified to read the literature and comment on it. Some one mentioned we are not educated enough to read these studies and must rely solely on our onc's opinions.

That may apply to some, but but I don't think broad generalizations are very helpful.

Christine

crazy4carrots

Interesting stuff Christine.  Seems as though many clinical studies over the last 10-20 years on the efficacy of tamox should perhaps be thrown out, given this new info about drug interference.

KEW

The drug interactions with Tamoxifen are not news, they've been on these boards, they've been in Journals and a million websites, and the importance of the CYP2D6 has been noted although some oncs until now have been hesitant to use it.  AIs help those who are poor metabolizers, but they have to be post menopausal, but there is probably little statistical difference in effectiveness between Tamoxifen and the AIs when poor metabolizers are accounted for.  I had the test done, I'm a good metabolizer, that's why my onc and I agreed that I will stay on it even though I had an ooph, and while she was in there I had a hyster, too.  I'm more comfortable with the mechanisms of Tamoxifen than those of the AIs.

For me personally, I trust almost nothing on the web unless it is a source I know is reputable. Trust me your onc is getting educated by reading things on the web, unless it is in a peer-reviewed journal that they have web access to.

Anyone can post anything and make it look factual. 

I also think name calling should be avoided especially from someone so new to the boards. What makes you think you are not the "nay-sayer?"  Why are you entitled to call those who have a different opinion from you "nay-sayers?" I guess it all depends on your perspective, right?  People can express concern on both sides, and some are in the middle, but name calling and labeling is not a cogent way to form an argument, especially from someone who claims to have a research background, the first rule of science is to allow others to have arguments that differ from yours, and you listen to them with respect, that is what moves science forward.  Nobody has to change anyone's mind, but if different opinions cannot be expressed without name calling, that isn't science, and  it makes this an unsafe forum to express yourself.

Question, because other women decide not to take Tamoxifen because they don't like the SEs,  is that a valid argument for not taking Tamoxifen?  How do you plan on getting though menopause?  The SE are pretty similar.  How many of you don't finish taking antibiotics when prescribed to you? Compliance is always low, look at the statistics of women who get pregnant while using the pill. The SE of blood clots and uterine cancer are not statistically significant. One more person out of 1000 may get uterine cancer, that is very low, but I did have mine removed since they were going to be in there anyway.  It is important to note that there are thousands of women on Tamoxifen, and the most dangerous SE are very rare.  Every single thing that happens to anyone on any drug in a trial must be disclosed, even if it was one person out of thousands, that's why when you read those prescription enclosures we all want to run away, no matter what the drug is. Everyone has a different threshold, I wouldn't take an SSRI for all the money in the world because of the SE's, but I will not berate, or challenge, or try to change someone else's mind if they feel they need the drug. I found it very difficult to begin taking Tamoxifen, but I did it, and I hope it was the right decision for me.  If I were younger than 49, I might really have been opposed to early menopause, but it was staring me in the face anyway.

I think we can listen to each other and be respectful, at least that's what I hope for.

Karen

MarieKelly

Texgirl wrote:

....but ladies are you seriously NOT taking a treatment because of your "fears" of what MIGHT occur ?

 I refused the hormonal therapy and radiation because I know for a fact that a good percentage of early, node negative breast cancer is surgically cured...especially when low grade and small in size. And since it's very likely my cancer was one of them, I see no logical reason to take treatment I don't need and which could potentially negatively affect my quality of life and health now and in the future. If my cancer had been higher grade, larger, more aggressive and certainly if I had been node positive or had evidence of distant metastatic disease, I wouldn't give a hoot about what potential side effects I might suffer from those treatments -  THEN I'd hit it with both barrels.  But that's not my situation at all. Not all breast cancer is the same nor does it all really require the same level of treatment. If one is fortunate enough to have the kind of breast cancer that in all probability was surgically cured and no longer exists, what would be the point of consenting to that additional treatment?

HelenaJ

Hi all, I am actually taking a 3 week break from Tamoxifen (2 weeks to go) with the approval of my Onc.  As I did not do chemo (oncotype result 6 - yeah!) I was over the moon that I had such an amazing treatment available to me (premenopausal).  Honestly all the info on the side effects did not bother me greatly.  However, after 12 weeks on Tamoxifen I literally couldn't get out of bed with the depression and fatigue.  I am a runner and love life and I didn't have any problems at all with my bilateral mastectomy and reconstruction, I so desperately wanted this treatment to work - and still do - I am going to give it another try - I also have a script for Effexor in my bag - which I so don't want to take - and I am also awaiting the results of my BRAC1 & 2 test. 

I think we all need to understand that side effects aren't just the "big" ones but they are also the small silent ones which destroy our every day quality of life and that erode the "spark" which makes us who we are.  It is so hard to see clearly and appreciate what Tamoxifen has to offer and its amazing results when you are in the depths of despair.  I just couldn't swallow another pill and my husband was so distressed whenever he had to leave me to go to work.

I actually joined a forum over here in Australia (one of the threads was called "has anyone refused chemo" so I thought I would find like minds and information) and when I did the Oncotype test (just about no one has even heard of the test over here) I received so many comments from women who had or were doing chemo saying how could I possibly not do chemo.  They just didn't understand and made me feel so desperately alone when I went there for support and empathy.  Making these kinds of decisions aren't taken lightly - the decision making is one of the worst things we have to go through with this monster and we all have doubts and fears.

sending my love

Helena

Member_of_the_Club

I am not a naysayer.  I am alive four and a half years after having breast cancer because of smacked it down with everything available.  Weight control and diet and exercise may help, I'm sure it does, but you can't possibly know if it cured you.  I can't know that chemo and tamoxifen cured me.  All I know is that it increased my odds.

Honestly, don't take the drugs, I don't care. But I do care very much if you are scaring women away from these lifesaving treatments. 

MarieKelly

I'm alive, well and as far as I'm aware, cancer free 5+ years after my diagnosis.  If I had allowed myself to be treated by standard of care,  I would have recieved radiation after lumpectomy and tamoxifen and/or arimidex and like you Member, never would have known for certain whether the treatments were responsible for keeping me cancer free all these years. However, since I refused it all, I can now say with absolute 100% certainty that those treatments wouldn't have made a difference in these past 5 years and would have given me no benefit what-so-ever. Because of the particulars about my specific disease, I was reasonably certain even at the time I refused them that this would be the case.

I don't think anyone here is trying to scare anyone away from "lifesaving treatments". That's certainly not my intention and I don't think it's anyone else's intention either. I firmly believe that these treatments are and can be very beneficial -  but not necessarily for each and every person irregardless of their particular pathology and situation as they're currently prescribed under standards. If someone has the kind of cancer for which doing less is a reasonable option, then these treatments are not really "lifesaving" anyway.  As in my case, they wouldn't be doing anything other than opening me up to the risk of potential side effects.  You Member, had a positive node, a much larger tumor and and a higher grade cancer.  For you, it might well be "lifesaving treatment", but for people like me it's unnecessary treatment.

Texgirl

I appreciate your words Member of the Club....I,too, am 4.5 yrs out and have been a user of Tamoxifen..it  caused some issues for me too..BUT ,I went on to try another ...one that has been quite free of side effects for for almost 2 yrs...that was what I was referring to...I am aware that if you are pre menopausal then it can pose a problem but for those  of us who are post menopausal we have several drugs to chose from ..don't just stop taking one  and not investigate the possibility of going on another. I was not attacking or underestimating anyone, nor am I a naysayer... just saying that even Docs can interpret the lit. in different ways.We as laymen ( though smart as we may be ) are not always as able to do so....at least not to the extent that I would negate my physicians' opinions. That is not to say that we should not be partners in our own health care.

When we have so many posts,,,and so many newbies, I feel that the emphasis is often on the negatives of a topic...(we tend not to comment when everything is going great )...so it is to that idea I was responding...I am a positive person and always hope for a positive outcome with my own B.C. but I think that should you cruise the stage IV threads you will find more than a few women who were node negative and had minute cancers...and those who were vegans,excercised voraciously,took their supplements and never smoked...we do not know how or if the cancer will grow..so I say hit it with all that you have and then you can at least say you did everything you could....

Remember these are discussion boards ..if we can't discuss.........

Britt

Hi everyone -

I met with my medical onco yesterday re to discuss going on Tamoxifen . . . I brought with me information on Brevail, which she had never heard of but was quite interested in.  She is giving it to her research department to check out.  However, she told me at this point, I "don't have a choice right now" about NOT taking Tamox, since my tumor was 2.2cm and I had a micrometic invasion of the sentinel node and did not undergo chemo due to a low (12) Oncotype score.  Happily, she did agree to the metabolism test to determine if I will be able to metabolize tamox appropriately.  She also said she wants me to be on it for two years - and once I go through menopause, she will discuss other AIs.  So we shall see.  She goes on vacation on 6/3 and will not return until 6/17 - so I will not be taking the tamox until she gets the results of the metabolism test upon her return.  So I will take a chance if I am cleared for proper metabolism - she also said if the s/es are unbearable, we will discuss using something else.

HelenaJ

Britt - your Onc sounds like she is on the ball and looking after you. 

Jo_Ann_K

This is an interesting question, and I've read about a lot of people who opt for holistic treatment in lieu of tamoxifen. I've been on Tamoxifen and have had limited side effects. I've also done a lot of reading and research on all the treatments, and the theme seems to be to take advantage of everything you can to prevent recurrence the first go round.  The results seem to be better. Remember percentages represent a LOT of people - even with DCIS, 2 out of 100 people will die from breast cancer within 5 years.  It's all numbers...you just gotta hope you're on the positive side of the fence.

lisasayers

You also have to know how to read the numbers and statistics.  Are they absolute or relative statistics. 

It's a personal decison for each person.  I don't believe in a one-size fits all treatment plan.

poolgirl

Whooo !! I have found an oncologist!! The oncologist I saw today said he does not advise me to take the Tamoxifen since I had such severe side effects. He said that the prognosis is excellent without it. He said it only buys me 2% and its not worth it to take it.  Praise God!! And Poo on that lady who was so mean to me on Friday! I will not go back there.

MarieKelly

Good for you, Lydia!!     That God there are sensible oncologist's out there - and so glad you were able to find yourself one.

Yazmin

mariekelly, merilee, vivre, fairy49: I am with you, indeed.

Lydia: Someone wrote that your onc is talking BS, and I agree with that person. I also agree with whoever wrote that if an onc would have told me that I am going to die if I don't take Tamoxifen, he would soon be my EX-onc.

Kew: not to defen vivre, but I have never noticed where she is trying to talk women out of chemo (and I do read her post carefully, but she sound reasonable and well-informed to me....).