Does anyone say no to Tamoxifen

fairy49....Does DIM block estrogen? What other pills are you taken? I cant afford to see naturopathic so the more I know what people on here are taken, will give me the info I need. I just finished 33 rads and they want me to sart taken Tam and I hate the idea of taken it and it scares me to much. I also was wondering if anyone else feels like they got a grib with it all and start to feel better about it.... then weeks later your back to feeling scare, angry and unsure about it? It seems like I have ups n downs so much that I start to feel like this is how it always going to be. I just want to be able not to always have cancer on the brain.

fairy

Is Metanx a B complex?

Hi Merilee! Its Folic Acid, B6 & B12 , I was little worried about the folic acid, however the research I have done in the past couple of days says it doesn't seem to be a problem, but I did call the naturopath just to double check as someone mentioned that folic acid wasn't good for BC survivors, who knows! I know that I have felt really good taking it, so I hope I can continue!

Lorraine

I said no to Tamoxifen after trying to take it twice.  I cannot even begin to describe the mood swings and anger I experienced while taking it.  I felt terrible all the time. I stopped taking it and am focusing on exercise, vitamins and organic eating (as much as possible).  I know it is a risk to not take it, but I could not stand the side effects.  I had onc test my hormone levels and I am officially post menopausal.  I like my onc, but she is all about the protocol and not open to discussing alternatives.  I still feel torn about my decision, but I just can't take that stuff.

For those of you who are joining us in not taking these drugs, and feel you are taking a risk, remember, you are taking a risk either way. By refusing drugs you may be risking a recurrance of bc, but you are also taking a risk that you will have dibiliating side effects, or long term effects that could be just as bad as getting bc again.   Like you, I felt the anxiety of taking these drugs seemed more unhealthy to me, and was causing me way too much stress. It is harder to always be careful of what we injest, and to be committed to better lifestlye habits, but the motivation is that I feel fantastic now, healthier than I have ever been, and I know I am doing something positive everyday. As you begin to heal from this trauma of getting bc, you will find more and more peace with your decision. I can honestly say that I no longer worry about a recurrance. I feel so blessedd that I found my cancer when it was early enough to get rid of it. I am not looking a gifthorse in the mouth by going back to all my old bad habits. So Skippycris, Hersheymom, Wintermoon, and rguiff, why don't you all join us on the natural girls and motivation threads where we share information on cleaner living and motivate each other to keep moving. Taking control of one's health is very empowering, and just as effective as anything a doctor can prescribe.

rguiff-As you start to feel better, you will be surprised how you will not even miss alcohol or junk food. When you start to associate with eating and drinking food as the best medicine we can take, you eventually make healthier choices. I am not saying we have to be martyr's, but if we eat clean and drink mostly tea and water, our bodies are able to process out our occasional treat.  I will admit, I still eat my chocolate everyday. I just make sure it is the dark kind that is very low in sugar and is acutally an antioxidant.

skippychris, on the natural girls thread we talk about supplements. Tumeric, Omega 3 and vit d are among those that are vital.

Hi all

 I think the decision to take tamoxifen or not to take tamoxifen is a personal decision.  It would be nice if our oncs would sit down and go over pros and cons in view of our own personal health risks,  but they (or at least mine) just view the cancer and not the whole patient.  While member of the club says that if the cancer comes back it is far worse than any side effect, I believe that is only partially true. Tamoxifen has some life threatening side effects too:  it increases your chance of blood clots, which for those who get them, can mean a stroke; it can cause endometrial cancer. As someone who has some of the other health issues, I feel that it is not a right and wrong decision; it is more of a balancing act.  And whatever anyone decides, it is the right decision for them. 

Have a nice day.

Member of T:

Quality of life is more important to me than a long life.  I am dumbfounded at the people who choose to live with debilitating bone pain, no libido, aching muscles, depression and anxiety and a host of other side effects but that's their choice to keep their cancer at bay.   keep going on and off the tamoxifen trying to balance the risk of having a recurrence with the daily trauma of living with painful muscles and negative changes in personality/emotions.  I don't want to live every day of my life in pain and misery.  I would rather do the chemo and the rads again rather than be on this damn drug for the next 5 yrs.  At least those treatments were temporary.  I'm probably at a higher risk anyways on the tamoxifen as I have other risk factors for stroke, diabetes, high blood pressure and high cholesterol but all the oncs seem to care about is bc survival, not overall survival.

Peeps

I go for mammo Friday... please say a prayer

Elizabeth Edwards was not on a hormonal.  Her original bc was triple negative.

There is no equivalence between the side effects of tamoxifen and metastatic cancer.  Go read the mets section and see what our sisters are going through.  Yeah, there are no guarantees that tamoxifen will keep you cancer at bay, but it will sure do a better job if you are er+ than not taking anything.  

I can understand how someone who has a low risk of a recurrence and bad side effects ontamoxifen would go off the drug, but how can you be "dumbfounded" by my chioce to take it?  I have a 13 year old and a 9 year old and I will do everything in my power to live to raise those children all the way up.  Go to the mets section.  Read about the mothers with young children who would give anything to put up with teh SEs of tamoxifen if it could keep their cancer at bay.

And ultimately the women with really debilitating side effects are very much in the minority.  I know that for those in that situation it can be truly horrible, but I don't want the women just starting out to think tamoxifen is the end of the world.  I've been on it 4 years.  I just ran five miles and am thinner than when I started.  I feel good.  Most importantly, I am alive. 

FYI, Elizabeth Edwards also had a 9cm tumor, she did not routinely get mammograms.  I just restarted my Tamoxifen after being off if for exchange and hyster.  I didn't have any real problems with it before, except night sweats, but most women don't avoid that in their lives, so I just see it as part of the path.  My mother and aunt died of bc two months apart, my mother took her last breath in my arms while I caressed her and held a gardenia near her hoping she could smell her favorite flower. She was restless because it was in her brain, just like my aunt, I talked softly to her and told her to go and I would be OK, and she did, at that very moment. I have no problem with using alternatives, if there is something behind it besides anecdotal information (I am a scientist, so it is hard for me not want statistically based information), but I finally realized I'm more scared of not taking the Tamoxifen, than I am of taking it, and trust me I'm darn scared of taking it.  I don't know what it will be like since the ooph, maybe too intense, maybe no different. I'll have to wait and find out.  I have started DIM thanks to Lorraine, on top of the 600 grams of veggies I eat every day.  I hope for the best for all of us.  It is humbling to read the StageIV and similar boards, I go there when I think I have it rough, I was the only non-mets woman in my support group, trust me it is a different experience than what we are going through. I watched my mom and aunt go from mx, to lungs, to brain, both within 3 years (my aunt was not a biological aunt, she was married to my mother's brother, just a horrible coincidence) Based on Oncotype I didn't do chemo, so I feel obligated to myself and my children to try Tamoxifen--it has been used for over 30 years, if there were really horrible long term effects--beyond uterine cancer, stroke, cataracts, we would know by now, many of the original women --who lived--are in the 70s and 80s now.  I got rid of my uterus and my ovaries, and hope for the best regarding stroke (my bp is 90/60) and cataracts, I hope they don't come my way.  Since being on Tamoxifen my cholesterol level has dropped 55 points, I've lost weight, and my libido seems intact. Who knows what's the best path, not me.  The one thing I do know is that I admire each and everyone of you for your honesty, courage, intelligent comments, and humor.

Karen

Fairy

Can you share what you have learned about what our desired hormones should look like?  What is 2:16?

After arguing with my ONC today I am more sure than ever that I am not taking tamoxifen any more. When I asked about my hormones from my blood tests today she told me that it is not necessary to track hormone levels as they know Tamoxifen works. WHAT? On top of that they have not checked my protein levels which is very important because if one certain kind  called AlB-1 is over a certain level then Tamoxifen has an opposite affect and can actually accelerate growth tumor cells.

 I have called my general physician to get labs for my hormone levels.  I want to get a base line then try the DIM and check them again.

My ONC is not in support of me on this but oh well. Sometimes I think they are so caught up in protocol that they forget they are dealing with individuals.

Also, last time I was there I was found to be low in iron so I have been on a supplement.  My iron was fine this time but because of the low iron before they wanted me to have an upper GI and a colonoscopy. I refused and told them that I had no intentions of going through that unless I knew there was  a problem. The answer was " anytime we see low blood iron we always ask for these to be done."  WHAT? I reminded her that my iron is fine now and told her that the idea was ridiculous.  Needless to say I am searching for new doctors who can respect me and my wishes UG!

My onc told me that my bilateral mastectomy put me at a 90-95% survival rate and Tamoxifen would only increase my survivability by 1-3%.

 I'm not sure if I understand this.  I thought a Lumpectomy and radiation was just as good as a Mastectomy in terms of survival.  I believe the issue is whether there are any breast cancer cells that escaped and are swimming around throughout your body. Tamoxifon is supposed to clear those out.  I don't think the fact you had a mastectomy reduces the chances of those rogue cells and if they are out there, I would think Tamoxfen would be beneficial.  Also the Oncotype DX test for postive hormonal tumors is only accurate if assuming hormonal treatment.  So where does your ONC come up with this figure?  Of course, everybody needs to decide their own risk tolerances.

Lorraine-that was a great explanation of the sex binding hormone ration. Thelid-Tamox does not "clear out any missing cells". If it did, it could be touted as a cure for cancer. What it does, is exactly what Lorraine explained, it raises the estrogen metabolites so that they cannot BIND with cancer cells and grow. This is exactly the same thing that DIM or I3C does. There is plenty of research to support this, and Lorraine and I both have done tests that prove it works. After 6 months on I3C 2H went up and my 16H went down. I will test again next year. Why don't doctors who put you on tamox take these tests so that you can see if they making a difference?

Mandy-You said it well. We are all here to share our experiences and not judge others. If someone wants to stick with a drug and feels it works best for them, then that is fine with me. But is someone wants to look in another direction, those of us who have would just like to encourage them because we know it works for us. It is totally a personal choice. This is not about who has the best answer. This is about making personal decisions that we feel comfortable with. Believing that we make the right choice is important to whether or not it helps. The power of suggestion is very strong.

Merilee, I have never heard that tamox shuts down the ovaries! If that were the case, why do women have their ovaries removed AND take tamox? ummmmm.............

Merilee-- The way your oncologist explained it is incorrect---tamox doesn't "shut down the ovaries" nor does it decrease estrogen production; it blocks the estrogen receptors in the breast, so estrogen can't affect thet breasts (but it still can affect other parts of the body). In fact, I still had to take tamox even after ovary removal as estrogen is still produced in the adrenal glands, skin and fat. The AIs actually decrease the actual production of estrogen.

Anne