Estrogen Blockers ??? Take it or dont take it ?????
I'm looking for women who have dicided not to take the estrogen blocking pills!!!! I need some input . My Dr. is telling me that I really don't have a choice, that I must take it. I have all the side effects that you can have and I can not deal with some of them. I really would like some info on how it has or hasn't effected other women !!!!! I just don't know what to do. Do I take the pills and be miserable for the rest of my life or do I just say no and feel a little more normal ??? HOW IMPORTANT ARE THESE LITTLE PILLS ?????????????????????????????
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Kathy, I am almost 3 years out now. I do not take the estrogen blockers. I tried Femara and did not like it at all. I too had aches and decided that for whatever time I have left on this earth, I would rather feel good. I do take other supplements to negate the estrogen. I take Lugol's iodine, (about 6 drops per day), and I also take a supplement that has ashwaghanda (sp?) in it. Itis Ocean's 3 Healthy Hormones by Garden of Life. (Women's formula) There is a lot of information on here and also on the internet to find natural and/or alternative ways to negate the estrogen. Brocolli, mushrooms, bok choy... Simple things like that. Dr. Oz also has his 5 most important anti cancer foods. Check his site. My oncologist happens to be very open minded and supports me in the Lugol's iodine. You can Google: Lugol's iodine/breast cancer, and you will find an abundance of information. Trust that the right information will come to you! None of us are guaranteed anything more than this moment in time. Live your Best Life Now!!!
edited for spelling!
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I also do not like the estrogen blockers -- I've had so many side effects from every part of breast cancer treatment including Femara. However my feeling is that I'm going to throw everything at this disease that I can. I don't ever want to look back and say I wish I had done more. So I'm following a stringent diet and exercise routine, and following my oncologist's advice.
But as others have said, you need to make the right decisions for YOU. No one can or should tell you how to live your life.
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Just wanted to clarify something about your post. Have you tried all 3?
The most common is Femara. The other two are Arimidex and Aromasin. My mom was originally given Arimidex and was miserable with the aches & pains. She went back to her onc to tell her she wouldn't take it anymore (she stopped it on her own and immediately started feeling better after two weeks). She was given a script for Femara and has been taking it for almost a year now without issues. I was started on Aromasin two months ago and so far have been OK. If I start having issues I'm going to try the other two.
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I have been on 5 different ones and all give me side effects. Some are a little better than others. but I hate all of them !!! They are just nasty for me . I'm so confused right now.
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i was on arimidex for five and half years. the side effects were difficult. however, if your original tumor is estrogen positive taking one of these meds helps your chances to stay cancer free. it is one more way to stay cancer free or..in some cases...to keep the cancer from growing . i am now 8 years out and still cancer free. after i stopped taking the arimidex; the side effects diminished.
treatment is an individual choice. chemo, rads...hormone meds. there are more then one you can try...but i think a way to look at it is this " do i want to do everything i can do to treat my cancer OR am i willing to take a chance because of the side effects...etc." if you are estrogen positive that means your cancer was fueled by estrogen. the meds prevent any cancer cells that may be left over from starting up again in your body. that is why they are so important .
it is a tough decision. partly, trust your doctor. but on the other hand; you are the captian of your ship. good luck.
hang in there
diana
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Katy: I have been on Arimidex for 6 years now and since I already have arthiritic problems, I did not notice the pains getting worse. The hot flashes left after about a year and they were never anything I could not cope with. However, I am finding this 6th year seems a lot harder but most people don't keep going after 5 so that need not be your concern. Like others have posted, I agree, that since you are estogen positive, this is your chance to protect yourself from your bc returning. I am just so thankful we have something to help us. My advice to you, if you decide to take the AL, is to go on with your life as before and don't focus each day looking for every pain and thinking it is an SE of the AL. Our bodies have pains caused by other sources so try not to focus on looking for problems from the pill and just think of it as your friend that is helping you survive. Best of luck to you!
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Hi Kathy,
Sorry you are hurting, but I think Medigal said it right. I ran your numbers through Cancermath, and I think that, in your case, there would be little doubt that I would put up with quite a lot to have the AI benefit. There is tons of advice in coping with A side effects on a couple of the threads.
I also realize that I have minimal SEs, and tons of other stuff that hurts such as my glutes from all the cycling I do.
Like a lot of the women on the forum, I am beyond thankful to have medication to help us stave off the beast. The cells I had were aggressive little suckers and used estrogen as fertilizer. So I am delighted to be able to starve any that dared remain after chemo to death.
Go do CancerMath. You will understand why your oncologist is so insistent. - Claire
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Kathy, I am really sorry to hear that you have had such bad experiences with estrogen blockers. I recently made an important decision in that regard. I have shared it elsewhere, but I won't share it here, since each person's experience is really not pertinent to another person. The closest thing to my two cents is that ultimately the short answer of whether or not you should take them is: they may save your life - or they may have no impact at all. Or they may kill you.
Ultimately, there is no scientific way to judge the medical benefits of these meds on YOU, personally, with the medical knowledge we have today. Statistics are not science - they are maths for groups and they are used as game guessers in annoying diseases like bc where targeted therapy is still in its infancy. They can also obscure facts. Take Tamoxifen, for example (I know nothing about AIs), which is classified as a carcinogen by the World Health Organization. This medication has zero effect on overall survival - that is, survival from all causes including but not limited to bc. This is because the benefits some women get from bc are numerically balanced out by side effects such as blood clots or uterine cancer, etc.... So one woman may die because of Tamoxifen, while the other will benefit from its anti-breast cancer effects and survive of bc thanks to the drug.
Ultimately, I would advise someone that it is a judgement of values; that you should make the decision assuming both the worst and the best case scenarios and only then ask yourself whether you are willing to go all the way.
Could you handle early death? Could you?
Can you handle the present level of misery?
Is life breathing or really living? Or is the misery tolerable? Only you can answer those questions. What do you have that you will live or die for, and are you religious or do you have small children?
Because, guess what, you got BC and the statistics most likely said that wasn't going to happen, right? And most people who do get bc are initially diagnosed at an earlier stage than you. Again, so much for "stats" as I hate to call them. We are in love with numbers in our culture. It gives us a false sense of security, and I think you know that, otherwise you wouldn't be going through such a dilemma.
Hugs,
"Athena"
Good luck with your decision!
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Claire: Thank you so much for sharing that CancerMath site! I ran my info through it and it is simply fantastic (if it is correct, that is). Made me sure glad I stuck it out with the Arimidex! It didn't even ask if I was on an AL but I guess the numbers are calculated by how many years you have survived since diagnosis. I bookmarked it to check it more later. Thanks again!
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I think it is cancermath.net
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cancermath.net
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Still not convinced that the pharmaceutical companies aren't backing the cancer math theory! I don't like the fact that these drugs may keep cancer away, but we can't be certain, yet they eat our bones, destroy our liver make us feel 90 years old.. Where does it stop? For me, I will stay holistic as long as I can. My oncologist told me the data on the Femara type drugs is still too new to see much results, as it takes several years to do the studies.... so you are looking at information that could be 5-10 years old.
Like I mentioned before. There are many ways to negate estrogen in our bodies.
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Carol.....go away. Just go away. BTW - I feel just fine on Arimidex and thank my lucky stars that I have help in staying alive.
Because, I don't want to die......not YET. I want every day.
Please don't encourage others to do things that could shorten their lives. I am "deadly serious" about this.
I am that angry.
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The cancermath calculation says my life will be shortened by -0.7 years......in other words I will do BETTER then someone without bc.
Something not right somewhere.....
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Wow. I've read & re-read this thread. I personally do-not see where Carol encouraged anyone not to take meds. Seems she answered the question.
Kathy~My diagnoses is WAY different than yours. I was 98% progesterone positive & stage1.
That being said, I did not take Tamoxifen. Had I had your diagnoses, my choice would have been much more difficult. Athene said it best. What can you handle?
Best wishes.
Dawn.
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I took tamoxifen for five years, with no issues whatsoever. I'm on arimidex now, had the acheys and stiffness, but taking vitamin D did wonders. You may wish to get your D levels checks, as mine were low.
It is a very personal choice, and I hope that all these ladies that chimed in can help you out with your decision making.
Good luck. For me, personally, I am happy to have something to take that has proven to help with recurrence. I won't be doing Zometa, that scares me, but you are the captain of your ship. You do mention that you've been on 5 different meds, but some of these meds need 6 months or so before the Ses lift.
Good luck and be well, whatever you decide to do.
xoxo
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As you can see, most of us in the stage III forum feel pretty strong about going down the conventional road as far as we can. If you don't want to continue with the AIs then I would suggest going to the Alternative, Complimentary and Holistic forum to see what the women there do to block estrogen. I'm sure they have ideas and suggestions.
But it boils down to the acid test. "Will I regret this decision?" Only you can answer that. Sometimes those are very tough decisions, sometimes they are no-brainers.
Granted, I've only been on Aromasin for two months. But I can tell you that I'm ready to try anything to keep on some sort of AI for as long as I possibly can. Because I've already been dealt a personal blow that influences how I handle my treatment. My sister was initially dx stage III with ILC - basically the same path report as mine. Everything was fine -- she took her tamoxifen for 5 years and was NED that entire time. Three months after she stopped the tamox the cancer came back in her bones. She was gone a year later. So that is my driver for sticking to this long road.
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carol1949 cancermath is affiliated with Massachusetts General Hospital and Harvard Medical School. I believe the copyright is 2007-2008 so the stats are dated. You can read more about it here: http://www.lifemath.net/quantmed/ I'm sure there might be funding that helps these folks with thier research but that doesn't mean they alter the results to support the drug company. MGH and Harvard Medical both have a solid international reputation. I don't think you need to be too worried about them drug companies controlling the stats.
Claire_in_Seattle I'm so happy the drugs are working for you. I know I too am going to give them a try. At the same time I do appreciate anyone who has an opposing opinion. As far as I am concerned I don't have to listen to anyone one this site… and really no one should. I come here to get a better understanding and more information so I can ask my doctors (the ones with the medical degrees and years of working with breast cancer patients) questions about my treatment path
No body here should assume the information on this site or online is correct. It should be a guide only. Even cancermath.net is dated and has a big disclaimer!0 -
I took Tamoxifen and Femara after my first BC dx in 2000. I was strongly ER/PR positive with my Stage 2A IDC. Passed my 10 year NED mark this past July.
Have been on Aromasin daily for almost 5 years now after my Stage 3C ILC dx in 2005. Was 94% ER positive, PR negative. The side effects of Aromasin dramatically reduced and my body adjusted after the first year. I find Aromasin extremely easy to tolerate now. I cannot tell if the general early morning stiffness is related to Aromasin or just part of being 57 and post-menopausal. I am now 5 years NED from my second dx.
I am one of those patients who has thrown the kitchen sink at my diagnosis, grateful I did and still feeling good enough to keep very busy with lots of non-cancer related living. If I didn't think the years of education, research and practical experience our medical professionals go through was worth listening to, I might not have followed the route I did. But I do believe there is value in higher learning and feel I have benefited as a result.
It IS a personal choice and to each their own.
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kathysvx - Lets not forget Tamoxifen has been around for about 20 years which is a very long time. It was the first anti hormone.
I have a love hate relationship with both AI's and Tamoxifen but one thing for certain, I am happy to be alive! No research has been done on more natural forms. If as a group they push this, they need to back their MARKETING up with facts. My experience is both as consumer and a seller of natural supplements.
FYI I always did "natural" prior to breast cancer for joint pain, for antioxidant protection, colds, always always always and my primary care physician supported this decision. She is not the normal "here is a drug" type DOCTOR. But when I saw here about my breast PRIOR to diagnosis one of the things she told me was to stay away from the natural route. She said the people she knew that did the "natural route" are no longer here. I AM not stage IV because of her insistence and guidance, knock on wood If I am lucky I never will be ! My tumor size was 11 cm, that is very large. I personally have seen some lovely, intelligent, beautiful and wonderful women pass away because they chose to do the natural route.
My purpose in saying this is not to scare you, as from being here I know that no matter the stage, we are scared, a common thread for us all! Do make your own decisions, we all have to. The fact that you are asking shows me that you are trying to gather data which is so very smart indeed.
Big Hug!
Susie
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I want to thank everyone for their input. I just really needed to hear the pros & cons.I usaully don't have a hard time getting a grip on things that are going on in my life, but this has really thrown me for a loop. I was fairly together when I did chemo & radiation but now things are kinda falling apart a little for me. I just need to get my head screwed on tight and do what needs done.Thanks everyone !!!!!!!!
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Claire, I apologize to you if I offended you. I certainly didn't mean to tell anyone what to do other than research it for themself. I do have a dear friend who is a 12+ year survivor and she did it totally holistically after having surgery. She has been inspirational to me in this journey and say what you want..... 12 years cancer free speaks to my heart.
I believe if you can handle the meds and feel relatively comfortable and believe it is the best thing for you, by all means do so. For me, I felt like a 90 year old lady, and I could barely get up from a chair. Now, with my choices, I am feeling much better, I tap dance, I excercise, I do theater.... and I work. And... my oncologist is a personal friend of mine and says "for me", the least medical intervention, the better I will be. I certainly had an intense course of traditional therapy to this point.... 22 weeks of chemo, mastectomy and rads.... so, at this point, I just chose a different path.
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Lago, Thank you for your input as well. I appreciate it. Like you, I appreciate this site for what it offers, but don't hold anyone's opinion as sacred. We do each have our own journey and our own responsibility to do what we are personally comfortable with.
I did go to the cancer math site and emailed them to ask where their funding comes from. I will be interested to see if I get a response. I know a lady who does research locally for a neurologist. Though he pays her... it is ultimately funded by pharmaceutical companies. She says they study only the drugs with no emphasis on nutrition , alternative or complimentary measures. That is the part I don't like about so many of the drugs. I believe in all my heart that drugs are absolutely necessary for some people. I am one who is just very sensitive to the drugs I have taken. I can't even take statin drugs.... Couldn't even raise my hand to the stearing wheel when I was on them.
After many years on synthroid, I recently changed to the natural thyroid and my hair density increased by 30%. My oncologist told me she thought my cancer was directly related to my thyroid.
p.s. the lady standing next to me in the red shirt is 12 years bc free!
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According to the stats that my oncologist gave me for my case at my age 40% of the women in my situation are alive without cancer in 10 years without additional therapy, the other 58% relapse. As my onc mentioned they don't know how to differentiate the 40% from the 58%. (2% die of other causes).
So it's really a lottery. I might be one of those 40% but the only way to find out is not to do any additional therapy. Problem is when you lose at this game you can lose big time. Yes the natural way might work but then again those folks might have been in the 40% group
.…and I might be in that 40% group and doing therapy that I might not really need. But who's to know.0 -
I was 5% + for estrogen. At the beginning of my treatment my Onc suggested that I take Tamoxifen. Make a long story short..I had a very bad surgeon to begin with, one which was so bad I switched..Well, because he was wanting to 'shrink' the tumor I didn't have the bilateral MX done like planned before I started my Chemo. I thought it was the worst thing to happen, but it was actually a blessing in disguise!
My new breast surgeon (in a totally different hospital) took control, did the scans that were never done at the beginning (it was 3 treatments in when the scans were done), and we decided that we would finish ALL chemo and then do the MX's. So, I did exactly that. I had a complete clinical response and I spoke with the Onc. I had radiation done, and I spoke with him about the tamoxifen. He was comfortable with my not taking it and said that I still have a 93% survival rate being NED for 6 years with everything that I had done and that the Tamoxifen would not really do anything to up it.
I chose to do this route because I am only 38 and I want to be able to live. I feel between the chemo and rads and all the surgeries that I have had was enough. I do have 3 kids (10, 6, and 2) I don't want to end up stroking because of some medicine that I took, and I would still like to have a sex life that has already been impacted because of this horror.
Take it, leave it, do whatever you want with my info.
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An important thing to remember is that many medical doctors who also agree with natural remedies, recommend using natural in conjunction with traditional pharmaceuticals. So I take nutritional supplements, exercise and watch what I eat in addition to Femara. I come at it from both directions.
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Hi,
Thank you for this post, this has been my dilema for a few days. I'm reading "Crazy Sexy Diet" and I personally think I'm going to try the natural approach and not take the hormon blockers, my body is going to stop making estrogen eventually. I also know that some of the side effects are worse than what the actual treatment is. Just google Tomaxin and you see the side effects. If anyone decided not to take the estrogen blocker, please send me some advice on what you did and what your results are. Thanks so much!!0 -
I was on arimidex for over 5 years and I still ended up with estrogen positve cancer on the other side. My onco. decided to put me on tomixfen. He said obvisouly the armidex wasn't working or had quit working for me. How do we know if what we are taking, is working. I hate taking the tomixfen. I have been on it for 2 months now. I asked about having a complete hysterectomy but he said there was no need and that I would still need to take the tomixfen even if I had the surgery. I stay so confused on what to do.
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I take femara, been on it for 6 months so far. I have painful feet and joints, some sleep problems, some tiredness and other annoyances. I find that the more exercise I get, the less SEs I have.
As far as I can see, at my stage/type of cancer the femara is approximately as useful as the chemo, possibly more so.
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I've been on Arimidex for two months and the pain is unbearable. This is not life. I see my doctor in about an hour to tell him I want to chance NOT blocking estrogen. All the numbers say it has a 50 percent chance of preventing a recurrence, but is a 50/50 chance worth this sort of pain? Should I give up "living" a quality life to maybe get breast cancer again? I gained lots of weight after menopause and some other serious illnesses. Fat produces estrogen. I'm going to lose weight and see if that works. I never had a weight problem growing up, so I think I can do it. I cannot exercise when I am in this kind of pain. Have others experienced the pain?
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