Estrogen Blockers ??? Take it or dont take it ?????
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Hello Nanci
I'm sorry you're in pain with Arimidex. Hope your onc can suggest something that will help you.
In the meantime, in case it is helpful, I started Arimidex about a month ago. After about two weeks I experienced fatigue and itching skin on my legs. Indescribable. Had a bit of constipation.
However, instead of taking it at night I started taking it in the morning and taking Lactulose, a sugar syrup to get things moving. Voila. No fatigue. Tiny bit of itching. Much improved.
Is this something you could try if you are not a diabetic?
Hope your onc can suggest something else that might help you.
It's an individual decision, of course, but even though I'm ER- but PR+ I am going to give it a go.
Best wishes
Alice
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Claire in Seattle….GO AWAY…JUST GO AWAY! (Geez...How does that feel?) You are very rude! Maybe they put up with behavior like that on stage II boards but if you come over to the stage III boards you should at least be polite.
I for one never want to log in again and see someone ever be so rude to someone else for sharing their ideas. I saw nothing rude in Carol’s post, only yours, it is you that owes an apology to her rather than her apologizing to you, which by the way I thought just showed that she is the better person and someone who I would rather listen to.
The original post was asking for other’s experiences, Carol just shared hers and she did not tell her what to do. You on the other hand basically said take it or you will die, or at least that is how it came across to me.
By the way, I have done all the conventional treatments, I am also interested in what others are doing too…..since I was one of many that could not continue taking ALs due to extreme side effects and I really did not appreciate your insinuation that I am going to die because I was unable to take it anymore. Trust me, just because I was unable to take ALs does not mean that I want to die. I did choose to have quality of life for myself and it was a very, very difficult decision and not something that I took lightly, so I really did not need to log in and read your post just to fill myself with more fear, I already have enough fear already.
Have you truly researched ALs? Not just the pharmaceutical sites, but truly researched them? Just wondering. I did. Have you truly researched the connection between recommended treatments, health care companies, and pharmaceutical funding? Just wondering. I did. Have you truly researched both conventional and holistic treatments? Just wondering. I did. Have you ever considered both? Just wondering. I did.
There are two sides to every story and insisting that only one is right really robs everyone of the opportunity to educate themselves and to make decisions based on what they feel is right for themselves, their health, their families.
I am not saying your opinion is right, I am not saying you opinion is wrong, but did you ever consider that your opinion could cause someone else to die too? Do you really want that responsibility? Maybe you should consider that the next time you tell others to just go away and insist that your way is the only righteous way ……………
PS Have you ever considered that it is possible that your "I am that angry" reaction is not really about what she said at all, but rather something else altogether,something inside yourself, that you are not dealing with. Just saying............
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Giddyup, why would you choose to jump in an argument as your first post?
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I've been on tamoxifin just over a year now and thankfully no major side effects to report. But I'm also tend to be very active so I'm wondering if that helps....biggest side effects is the hot flashes and night sweats and although they are a pain in the butt I'll take that over a bout of BC anyday.
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I have only been on Tamox for 6 months and it really hasn't been so bad. The first 8 weeks sucked. Terrible sleep, huge mood swings, hot flashes like crazy and then it all sort of leveled off. I can't say its been smooth sailing I had to switch brands due to an allergic reaction with an inactive ingredient in one tamox brand, but thats not the actual tamox fault. Only you can truely decide whats best for you but my MDA Mo says that in his opinion Tamox or anti estrogen therapy is one of the most important parts of treatment. On a positive note, I have lost almost 20 lbs on tamox, which my regional MO says is not uncommon. Why not experiment for a few months, try it for 3 or 6 months and see if you have problems, try a different brand if you do. If they never level off then you can reassess. But for me there was very little I wouldn't muddle through for even a microscopic boost at more time with my son. Good luck with your decision!
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Just wanted to share along the lines of what MininMacsMom said above. My MD Anderson doc gave me a print out of my prognosises and the % each treatment added to my survival. My hormone treatment % was higher than my chemo treatment % in adding to my survival. I am ER+PR+ so that is a factor.
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hello kathy, thats a question that only you can answer, do lots of reading the pros and cons.
im a trip neg so dont have the opportunity to take hormone receptive meds, would i if given the chance, yes.
xx
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I have just recently had my surgery double mastectomy 21days ago, and as usua still-have problems, my drains are still in,too much fluid so my sides are hurting pretty bad, and so uncomfortable.
Also I am a heavy woman so I also have these nasty hard rings all the way around my armpits my doctor told me it's extra fat so I can hardly put my arms down.
But I was wondering if you had any feedback yet . I had chemo before my surgery to shrink the tumours and had all kinds of problems with side affects,I was in a wheelchair by the time they decided to stop the chemo and do surgery, this was a little before xmas and they wanted me to regain a little health. So my doctor told me I will be on the oestrogen blockers for 5 years,not happening . Started getting the side affects almost straight away,I wanted to enjoy my time with my grandchildren. So anyway here I sit waiting to heal from the surgery next comes radiation.i must admit I have no quality of life so far,hope it gets better soon help......0 -
Hopefour, my onc also stressed the importance, long-term, of taking an AI. He actually gave it the same or more emphasis than my chemo. For my own situation, I wanted to grab at whatever tools available to me to help prevent recurrence.
I've been on Femara six months, and I'm learning as I go along. Exercise, stretch, exercise, stretch. Don't grouse and perseverate on the pain. I take naproxen 440 mg twice a day (that's also for my frozen shoulder, for which I'm in physical therapy), and gabapentin 300 mg in the evening. Both drugs help a lot with the stiffness and painful joints.
There was a study (in England, I believe) that demonstrated that women with joint aches as a result of their AI had a lower incidence of recurrence. I'll have to look that one up, but FOR ME...I'm past the lumpectomy, the chemo, the mastectomy, the radiation, and all the scares, scars, biopsies, burns, and active treatment nasties. Now pass me the Femara, please, I want to see my grandchildren's weddings.
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kathysvx: Hi, I am with you in that I believe if you take an estrogen blocker and it does not agree with you that your quality of life is more important! The good side of estrogen block and inhibitors is there are a number of them. I started out on Tamoxifen with lousy side effects. I felt lousy for a good two months and right when I thought this drug isn't for me the side effects subsided. Unfortunately it was about that time that my onocologist decided that he wanted to switch me to an estrogen inhibitor because its about 5% more effective in the prevention of reoccurance. I was put on the generic of Arimidex which is Anastrozole. To get the true benefit of Anastrozole I needed to be in true menopause. I hadn't had a period in 9 months because of chemo but I was not in a true menopause. I was given a Lupron shot once a month for 3 months to essentially throw my body into true menopause. I was taking Anastrozole at the same time. I didn't have any side effects for about the first 7 or 8 weeks and then they slowly started. I ended up with pain in my feet, knees, tailbone and hips. I would wake up with a headache almost everyday and it also affected my memory. It felt like chemo brain hit a reset button. I tried to wait it out and hoped that my body would adjust to it but the side effects persisted and it was really affecting my quality of life just when I was trying to bounce back from all of the treatments and get on with life. I gave it a couple of months and the side effects never subsided so I was taken off of Anastrozole. I was given a two week break and switched to Exemestane which is the generic for Aromasin. My body is still aching from the Anastrozole so I am not sure how long that will take to go away, but I feel like my mental fog is lifting. Talk to your oncologist and see what your options are. Good luck with whatever you decide!
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Your question is a great one and a dilemma many of us face. I was first diagnosed stage IIIC, tumor - 1 cm, 13/16 positive LN, at 7/2007, Er+, PR+, Her2-. After chemo and radiation treatments, I tried one after another of the hormone inhibitors, all making me feel miserable. I ached, huge fatigue, etc. After a couple of years, I just opted out. My onc tried to encourage me to continue them, but I refused. I just felt that I wanted to feel good during the "good" time I had left.
Well, I am now 5.5 years laters facing bone mets. Will I take the hormone inhibitors now? You bet I will. Do I have regrets? Some. I am glad I had some time of feeling fairly good, but I do believe it cost me. I will happily work with dealing with the side effects now if it can reduce the spread of this awful disease.
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Hi,
This is very interesting thread. I don't know anyone BC survivar who didn't take hormonal therapy. But i know some one who had 3rd stage Lung cancer and chose holistic medicine when his doctor said he has 6 months to live. He is now 85 and still healthy and strong. I I have high regards for those who able to make a strong and alternative decision. To find out the effectiveness of alternative/holistic medicine some of us has to try it anyway. If Holistic medicine can get funding as these Mega Pharma gets, i think it will definetly produce very good results.
If you can convince yourself please go for it.
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I endured the AI's for 3 1/2 years and finally said enough is enough!!! that was almost 3 years ago..... I know I gave it my all, but I just could not deal with the side effects any longer...I'm now 7 years since Dx and have my 6 month check up with onc next month....G-d willing I will continut to be NED!!0 -
Hi Karen1956,
So you haven't any hormonal therapy? If so that is great.
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Hello -
I just finished my fourth round of chemo today; when my sixth is done on 5/2 if we keep on plan, then I will do 6 weeks of radiation. After that I start a 5 year regime of Estro Blocker. My Onc and my BC surgeon both indicated it would be the deal maker for me. If I go back to when I first heard the words, "I'm sorry, you have breast cancer" and remember the sleepless nights and I pondered my future as short or long I did a lot of crying.
Now, surgery was successful, chemo is a challenge - the roller coaster is exhausting and can be over-whelming but so far, doable and manageable.
I don't expect radiation to be too too scary but I do stress about the Estro Blocker. I won't not do it, but I am prepared to try them all if I have to to find the right one for me. I am not a happy meds taker; today I asked the Onc nurse during my infusion for her take on natural medicine and she said "there is a place for it and it can be taken in concert with regular medicine. In the beginning, a lot of Onc drugs were derived from plants. She felt the two can work for those who chose that path.
I am on Taxotere (and Cytoxan) which is derived from the yew needle of trees - so it is a plant based, natural medicine. It is toxic and the admin of it is a slow drip. So there is a 'partnership' in medicine of natural and chemical derived treatments.
My worries are losing my complete sense of feminity, my sex drive, and aging beyond my years. I think some of you who are physically active seem to have a better handle on this and I take that approach as a good one. Whether I can do that - well we will have to see. Right now, I am just really annoyed at how much my life has to accommodate the treatments - it really PI$$E$ me off!
Thanks for letting me share, I will be following these discussions and hope to learn more; but, in the end, I will still listen to my docs!
hugs, sweet dreams, healthy days ahead,
Kathy
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Language help - what is NED? what is an AL?
I am post menopause so my choices are different than I think you all might be taking; the Pfizer drug seems doable but it only comes in a 25mg and it would be nice to start of on a 10mg and work your way up if necessary. 25mg seems like a lot!
K
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KATRS, the acronyms can be confusing. NED is "no evidence of disease," a state that we all work toward. You asked about "AL," but I think you meant "AI," which is aromatase inhibitor, the estrogen-blocking drug that is usually prescribed for a woman past menopause.
There are currently three such drugs--Aromasin (exemestane), Arimidex (anastrazole), and Femara (letrozole).
You may already be aware of this, but there seems to be a huge variation on the prices that pharmacies charge for these drugs. I've read that Costco is a lot less pricey than some others.
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sbelizabeth, thanks for the clarity - NED is definitely the goal!
I guess I will be on one of the three you mentined; my EST was at 39% and my PROST was only 19% - I'll take those numbers and do what I have to! And, thanks for the information on the pharmacy pricing! Costco is definitely on my list to consider - used it before for my son's skin care treatments and they were really good about breaking down the dosages to two tablets (combined gave him the same dosing) to save me more money!
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Carol 1949....I've been taking estrogen blockers for the last 5 months with horrible results. My onc has switched me to four different ones, all the same results. I've been off all of them for a month now, and the muscle and joint pain is still worse than ever. He said it might be my Fibromyalgia or another Rheumatic Disease flairing up. I will probably go to see a Rheumatologist soon since I cannot function at all. I read your posts about alternative methods, and I was wondering if you ever heard of Indolplex or DIM PRO, which are suppose to be natural estrogen blockers. I've already decided not to continue on the Aromatose Inhibitors, since like you, I feel like I am 90 years old and the next step will be a wheel chair. Any help on this will be very much appreciated!
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I'm currently not taking any hormone blockers. I only did 6 of 16 chemo treatments and decided I'd had enough. I've switched to a natural approach and I feel like a human being again. I take Broccoli Sprout Extract - which is the same ingredient in DIM PRO, I also take Curcumin with Bioperine, MCP (Modified Fruit Pectin) and Vit D and B12. I only eat fruits, vegetables, and occasionally meat. I drink water and green tea only. I try to only eat organic fruits and vegetables, and only meat from an organic grass fed source. Fortunately we have lots of game and fish here to eat so clean protein isn't too hard to find. I just found out that naturopaths are going to be covered by insurance as a requirement of the Affordable Care Act so my onc will finally be covered. There have been alot of studies done on hormone therapy as being a larger contributor to chemo brain than the chemo itself, and the memory loss and cognitive impairment is worse than when on chemo. The effects are also more likely to be permanent as well. I'm 43 and work in a technical field, so this just isn't an option for me. I will stick with all the natural options I have for now. I am also going to be having a hysterectomy/oopherectomy as well so that strongly reduces the amount of estrogen floating around in my body. Hopefully enough to keep my brain powered - your body needs a certain amount of estrogen to function efficiently so that is where the blockers can sometimes wreak their havoc...0 -
kathysvx,
Just because you are having side effects with chemo drugs doesn't mean you will have side effects with estrogen blockers. I had a horrible time with chemo -- lots of side effects: extreme fatigue, loss of appetite, weight loss, hair loss (of course), achy legs with Taxol, plus several infections including abscesses in both surgery sites. Also had a tough time with surgery -- took an incredibly long time to heal (axillary site was still draining months after). And I got "burns" with radiation.
But I have been on Arimidex since 2005 with no side effects except hot flashes early on, which have resolved. And I am 9+ years since my diagnosis, still NED!!!!! I plan to stay on it to at least 10 years at this point, then look at other options.
I personally want to take advantage of all the options available to me to keep that cancer away as long as possible. I had no grandchildren when I was diagnosed & feared I would never see any. Now I have four grandchildren -- love watching them grow and mature!0 -
optimistictraveler....congrats on 9 years!! MD Anderson recommended chemo, rads and hormone treatment , but said hormone treatment added the highest % value in my survival ( highly ER+, PR+) ...I pop my lil pill everyday....thank you for your encouragement!!0 -
Here is my take on this issue, cancer is unpredictable and so are it's treatments. No one can 100% determine what causes it, who will get it, and how it will play out. Yes, they have some clues, like smoking and lung cancer, but not all smokers get lung cancer and some nonsmokers get lung cancer. Each person and each cancer will respond differently to any of the treatment methods, whether alternative or conventional. I tried and continue to try the do whatever possible to fight this disease, I do a mix of both types, because that's the type of person I am. Of course, I'm lucky because I don't have as many or as severe side effects some people have so my decision is easier to make. We will never know with certainty if we made the right decision because cancer can rear up again after 5, 15 or even 30 years. All we can do is get as much information as we can and then make the best decision for us based on how we want to live.
I will add that research, I know some people discount that but most cancer treatment methods were discovered by research (even the alternative ones), reports that estrogen blocking treatments do provide benefit in helping to prevent recurrence. Recent research has even determined that taking them for even a short period of time helps and continues to offer some benefit for a period after they've been stopped. It has been recommended that women take them for 10 years now instead of 5 due to the benefits received. Another example of research discovering benefits for treating cancer is Herceptin. Before Herceptin, women who were HER2+ had worse outcomes to women who were HER2-. Herceptin has come a long way in reducing that difference. I will warn that I'm an accountant so I believe numbers, i.e. data, is the best way to take the emotions out of results and look at the true outcomes. Yes, sometimes the numbers get skewed by bias, but a true scientist seeks real answers. So I believe research gives us great insight into what treatment methods are likely to work best. However, people aren't statistical, predictable beings. EVERYTHING influences how we respond emotionally and physically and we don't all respond the same way. So a scientist (doctor) might push for treatment methods that are more likely, statistically speaking, to provide benefits, the individual still needs to determine how that method affects them. They have to look at their priorities/feelings/side effects/etc. and decide the best course of action.
When I started this I didn't mean it to be so long. I had chemo today so that might account for my gab fest. The final thing I want to add is that I don't regret any of the treatment decisions I made because I chose them with the best information I had and how I felt about them logically and emotionally. I hope everyone here has great outcomes and are at peace with whatever path they choose.0 -
I feel like I need to clarify some information about estrogen blockers wiping out estrogen in the body. This actually isn't completely true. Estrogen is produced in the ovaries in women and in the testes in men, although other tissues in the body can produce estrogen; in fact, overweight people often have an excess of estrogen produced by their excess body fat. So even having your ovaries removed or taking blockers doesn't get rid of all estrogen. Even though I was on an estrogen blocker, my body was still producing excess estrogen due to my obesity...I'm fat I admit it. I would advise that if you do choose to go the alternative route please seriously consider losing weight if overweight, this will help to reduce the estrogen load your body is carrying.
There are a number of different kinds of estrogen blockers. Aromatase inhibitors, including vorozole, testolactone, and formestane, actually block the production of estrogen. Selective estrogen receptor modulators, such as tamoxifen, clomifene, and arzooxifene, are designed to block estrogen receptors, behaving slightly differently in different kinds of tissue. Antiestrogens also act to block estrogen receptors.
So tamoxifen doesn't actually stop the production of estrogen, it stops certain cells (that have receptors) from letting the estrogen bind to the cell. I just wanted to make this clear because some people, including myself when I first went on tamoxifen, believe that it turns off estrogen production and it doesn't.
If someone is looking for a more detailed description of estrogen, its effect on the body, and the blockers a really good website is:
http://www.cancer.gov/cancertopics/understandingcancer/estrogenreceptors/AllPages0 -
wow, 9 years on aromatase? I did not make it to 6 weeks. From Arimidex to Femara. I could barely move. I had every single side effect and then some. My oncologist was in shock. I turned into an old woman in six weeks. He removed me from those and decided to treat me with tamoxifen. I just had reconstruction a week ago, so I am waiting a week to start the tamoxifen and I am praying that it will work for me. The lack of estrogen caused atrophy of the vagina among the other debilitating side effects. So I had to be treated with Vagifem. So back to estrogen. What a vicious circle.0 -
The side effects ease up! Going on and off, trying different AI's, has made them bearable. I never would have believed this would have happened. Don't give up! Take a break, then try again.0 -
Thank you for this discussion. I've been reading all of your experiences. For me, the bottom line is how the estrogen blockers make me feel. Absolutely horrible, inside and out! I've been on Arimidex, Tamoxifen, and Aromasin, and I finally said I'm done. Just can't take the SE's making a major impact on my quality of life. I had a knee replacement last January and finally decided to stop the Aromosin, at least until I got thru the whole recovery process of that. It's now a year later, my knee is great, I'm not in pain any more, and now I get the nagging feeling that maybe I should go back on the Aromasin. But I just can't bring myself to pop that pill. I guess I'm really taking a chance but then again there are a lot of sisters here who have done everything right and not slacked like me and yet they still go on to progression with their cancer. That's what stops me from going back on the Aromasin. What can I say other than hopefully I will continue to remain NED.0 -
Hi i have decided not to take Tamoxifen, i figure i was 38 when they mxd me and now i am 40, still trying to wake up from this nightmare. Chemo and rad did their job and now i will just try to live what ever years i have left but i cant deal with more SE than what i have now. I had enough
best of luck to you all. what ever your decision is.
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I believe everyone needs to weigh the benefits and side effects with your medical team and make the best decision for your life.
For me, tamoxifen is something I'm determined to make a go of. My onc tells me the benefit is equal to what I got from chemo, so it's a big part of what I'm throwing at this thing. I've gone through some recurrence scares and I feel more at peace knowing I'm doing everything I can--would I feel differently if I had bad side effects or if my daughter were already grown up? I don't know. I guess that's part of weighing it all out.
I wish you the best with your decision--not for the first time do I wish we all had crystal balls and could know how things would work out in different scenarios and had a clear path to take, but I guess all we can do it listen to people with accurate knowledge and make the best choices we can.0 -
I'm only chimng in because I haven't seen it mentioned here. I am 44 I just had my ovaries removed. After the removal I felt like an old person, I was bent double getting up every morning, in addition to severely swollen joints. While I hated the idea of adding any other medications, my oncologist put me on celebrex and my pain management doctor gave me voltaren gel. both have helped me immensely. Of course everyone has to decide for themselves what route to take but for me I am content with my choice even though I don't like it.0
