AI's and Quality of Life
I am one of the unfortunates that has experienced debilitating side effects from AI's. The first prescription was arimidex. My hands were in pain starting with the first dose. Joint pain followed along with insomnia, hot flashes, depression, fatigue and mood swings. After nearly one year, my doctor switched me to aromasin. The first week wasn't bad but then the hands, joints and muscles pain started with a vengeance. I suffered insomnia, hot flashes, nausea, dizziness, headaches, fatigue, depression, major brain fog and mood swings. My family physician tried to offset the side effects with supplements which helped but never eliminated the problems. Any time I worked out or engaged in strenuous physical activity, my joints became so inflamed that I would be incapacitated for a day or longer. My entire spine throbbed, my shoulders, elbows, wrists, hips, knees, ankles, bottoms of my feet and even my toe bones hurt. I often mentioned to my oncologist that I would never know if the cancer spread because my bones hurt all the time. When my husband and I moved to our new home, I quit the aromasin so that I could maintain my stamina and strength throughout the move. I only stopped for six days but I felt so much more energy, huge drop in pain, infrequent hot flashes, good sleep and I was really beginning to feel normal again. I even started feeling smart again. WOW! What a difference! I started back on the aromasin on day 7 taking my dose with dinner. By the next afternoon, I felt like I had the worst PMS in the world! I was agitated, my skin felt like it was crawling, I wanted out of my body - I was in tears - how could there be such a difference? That was my turning point, I've stopped aromasin and am trying to regulate my hormones through diet and herbal suuplements. My oncologist won't be happy but after two years of extreme discomfort and trying to manage all the side effects to feel kind of normal, I want my quality back. Has anyone else been down this road? I've read that some are on Myomin along with other supplements. Are your hormones being tested and are you achieving the desired results?
Comments
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Hi Janlee
I was on arimedex for over four years. Not bad in the beginning but then it became horrible.
Total brain rot. I thought I was having dementia -- memory gone, everything ached, just could not take it.
Tried femara and it was worse!!
So after speaking with onc, I stopped the AI's and started on Evista about two months ago.
What a difference! I can think again, remember words, my hair on my head is getting thicker and the hair on my lip and chin is gone. My vagina is no longer bone dry
Maybe ask your onc about this?
The only thing that is not better on Evista is the hot flashes, which I can live with. -
Hi Janlee,
I tried Arimidex for six weeks and quit taking it. My side effects were different from yours, but very debilitating for me. I then tried Tamoxifen for six weeks and quit that one too.
I don't know of any natural supplements. A friend of mine takes grape seed extract. You might want to look into that.
Best of luck to you in your decision .. it's not an easy one to make.
Bren
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I am taking Fareston (Toremifene) which is tamoxifen for post menopausal women, and have had no bad side effects.
I refused to take any AI's due to my having both rheumatoid and osteoarthritis. I know most onco's prefer AI's to SERMs like Fareston - but I'd rather take Fareston than not take anything.
Judy
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I took tamox for 2 weeks and had sever abdominal pains with severe diarrhea, stopped it for 5 days and started again on half the dose, 2 weeks later it started all over again but worse and lasted 3 days. The stomach gurgling continues but I think it is the tamoxofin working its way out! Im DONE! I think it would have killed me.. I begin my Lupron shots end of December so I will begin AIs then too, I will look into the Evista mentioned above, seems to be a better choice? I have read that if you take Acai Berry vitamins and eat foods that fight radicals and cancer cells, it is just as powerful. Hmm.. worth a try to change eating habits while trying other meds that have less SE.
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I endured AI's for 3 1/2 years....3 wrists surgeries because of them...CTS on right wrist....was to have surgery on other wrist, but when I switched to tamox from Arimidex, the CTS went away.....lo and behold, CTS is a side effect of Arimidex....then bilateral dequervanes tendonitis on Aromasin....surgery on both wrists....side effects just go to be too much to bear (or is it bare)...cognitive issues, memory, insomnia, depression, anxiety and the list goes on.....I'm not who I was before BC, but definitely better off the AI's....its now going on 20 months since I quit...don't plan to try them again.....I've given it my all...bilat, chemo, rads, ooph and 3 1/2 years of AI's....I'm 5 1/2 years post Dx.....onc would love me on something....but at my last visit in August when I asked how long if I decided to give AI's a try again and he said 5 years!!!! no way will I give up 5 more years of my life.....QOL is more important!!!!
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These drugs are so powerful and they do lower your estrogen - for me, the levels were so low that they could not be measured! Not only does it reduce the carcinogenic forms of estrogen but it also lowers our good estrogen. I have heard that the AI's not only cause osteoporosis but may lead to heart problems. Not surprising since estrogen protects our hearts too. My onc also said that as results continued to come in on the AI's that it may mean taking these drugs for a recommended ten years verses five. I've also read that they want to use these meds proactively in post menopausal women as a preventative measure. I can't imagine living with the side effects for five years let alone ten years or why a woman would want to take them "just in case". I know that not everyone suffers as I have and in some ways I wish that I could follow the recommended therapy because there is always fear of recurrence. I'm sure you know that some women experience hair thinning or balding on these drugs. Well, I didn't think I suffered that problem until, after stopping aromasin, my hair went through a growth surge. The weird part is that it grew lopsided! The left side was over an inch longer than the right!! My hair stylist asked me if I tried cutting it myself or if I had burned one side at the stove while cooking. This growth spurt took place within 2 - 2-1/2 weeks. The other side effect I had was horrible gastric reflux regardless of what I ate. That has virtually disappeared as well. Food tastes better too. I started a regimen of Myomin along with other Chinese herbs to control my hormones yesterday. Too soon to say what I feel but I'm optomistic about this therapy. I've also cut out refined carbs and am eating tons of veggies, protein and fruit. My energy has already improved. As for the brain fog - it was so bad that I couldn't follow conversations or concentrate while reading, I've been on a neurotransmitter supplement program that has been very helpful. I'm hoping that I won't need them any more once I can get my body rebalanced.
My hear goes out to anyone that has had to endure surgeries to fix problems from AI's. That just isn't fair.
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I was on Tamoxifen for 4 weeks, after 2 weeks had severe abdominal pains with bad diarrhea. stopped it for 5 days, felt so much better. Then restarted on half the mg, 2 weeks later the same thing! It is now 3 weeks off of it and Im still off and on with the diarrhea but not nearly as bad. Still get the urgencies and have to run.. Went to the GI and she said it was the Tamox and that sometimes it can do damage where it is not reversable.
I am now told Lupron shots will do it and taking an AI, Im so nervous to start up on another type of drug! I dont know that I will do it.. too much to handle, no quality of life. Awful way to live.. there has to be another way...?
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I've been told that after my surgery and rads, that I will be offered one of these hormone drugs to prevent recurrance. I will do almost anything to avoid taking these. To me it is a QOL issue, and I am willing to risk recurrance to have that. I have already done the diet and lifestyle changes and feel so much better. Hope this is all I ever need to do, but if necessary, I will explore options other than hormone drugs. Chemo is off the table for me too.
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I have been on Femara for almost 2 years. The s/e's were unbearable the first 3 months, so on my own I started taking half a pill (which is 1.25mg). My Onc wasn't thrilled, but agreed quality of life was important. Said he'd rather I take 1/2 a pill every day than a whole pill every other day. I looked at the prescribing info on the Novartis website and saw where full estrogen suppression occured with .5mg and above. I'm comfortable with this. My s/e's are very minimal now. My estrogen level is still as low as it can be. Don't like this, but I know this is the goal, so I'm glad I can achieve it with a half dose. Haven't had a bone density scan since my baseline when starting Femara. Should have one in a few months.
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jacee: Thanks for the info. Femara is one that I might consider taking if I could keep the SE's in line. A friend said her dr. prescribed it for her and she doesn't even have bc! He said it would protect her from getting bc. Has anyone ever heard of that?
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Yes, there was an article on that in August 2011 - you can probably find it on this website if you search back to August 2011.
It is suggested that high risk women take it to possibly prevent getting bc. The only bad thing is that the chance of their lowering their risk of getting bc goes down by 1-2%age points - and some women as well as their doctors feel the SE's outweigh the very small % advantage they get from taking an AI.
Judy
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I was looking for something that equals Arimidex in its percentages of reducing risk of cancer, and I found this little thread going. I will look up Evista that ONEBAD mentioned. I have some notes on foods that reduce cancer risk, also more notes on estrogen & its effect on OTHER body chems related to cancer, but my mind is so confused I cannot deal with contributing this info right now, but I will later (I hope).
BUT, when I got to this thread, all I could focus on was the last post by JUDYFAMS who tells about the article that says women who took it to prevent cancer, they reduced risk by just a couple percentage points. Now, I've read some amazingly confusing percentile characterizations from studies, various bold interpretations by our members at this website, and some questionable editing of science articles, but as I said, my mind is all a jumble today, and tho I've collected some simplified final figures from months ago when my head was clearer, about what some percentages mean for Arimidex as relates to number of people (100) in a study, which I still sort of came away confused but was convinced for SOME reason those things help, HOWEVER, it's the relatively small numbers, altho nothing to laff at, that worries me.
See, I'm like all of you here, I am taking Arimidex, began it on Dec 20, and now it's Jan 10, and I had to stop taking it two days ago, it was literally driving me insane. I'm postmenopausal, so I was afraid to take it, didn't want another run-thru of that nuts-zo world. Sure enuff, when I took it for the first time, I waited until I felt almost completely normal after all cancer treatments done, and took that pill. Within days I was awash with tears, anger and frustration, hopelessness (when just days before I was all set to go with plans for the new year), and yes, I was MOVING ON WITH MY LIFE, which took some mind games to switch the cancer me off and the real me on, and all that collapsed. Sleep began to get much worse, depression deepened. And as I said, just today, I began taking the pill again after two days away from it, and now I cannot think straight all over again.
I am so TORN between wanting the best for myself, wanting to take this dang stoopid pill that is supposed to help me... let's see, is it to not have recurrence or survive? i donno... but I balance that out, with some forumla of varying percentages depending on whose is the more misleading than the other, and then I have to do science research when I'm a retired journalist to find out just what might I eat that would reduce my chance for cancer to equal Arimidex chances, so I acn substitute completely unknown unstudied numbers for my madness pill, so I won't go out of my mind. I mean, what's up with that???
I'll come back another time, I have info to share, but it all seems just so HOPELESS. I thought I had put fear of recurrence behind me, not to mention death, and not to mention of three of my cancers (all in one boob), two are amongst the most lethal and rapidly occuring there are, but I'm getting to the place where I don't even want to go back and see the doc in March becuz I'm terrified they'll find something wrong, and my spring and summer were taken from me last year in chemo & surgery, and I am DETERMINED to set myself free until fall... ohhhh, only folks who visit this thread know. GG
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dogeyed: I am so very sorry to hear what you are going through. I made a decision early on when I was dx that I would not do chemo and Al's....I just don't have it in me to go that route. I applaud anyone who can put up with the pain and suffering to make it through conventional treatment. I was fortunate to get clear margins and nodes from my surgery, but certainly that is no guarantee that the bc will not return at a later time, and I am taking a risk by passing on treatment; however, I am attacking it through diet and supplementation, which in itself is a big committment.
I see that your bc is very invasive and failure to do some kind of aggressive treatment would probably not be wise for you. I wish I had some answers, but I would say that if your research is showing only a small margin of improvement by taking something that is making you feel that bad, it would certainly be something to question. Surely there is something else you can try that might not present the SE's that you are experiencing. I would get a second opinion, maybe from Duke or UNC.
We spend the summers in Hendersonville NC and that is where my mammo was done that found my small suspicious area...I just elected to come back to Fl where my family all lives for treatment.
Sending you prayers that you find the answers that are right for you, and that you have a positive outcome!
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Thank you KAARA for responding to my sorrows and confusions. Well, restarting the Arimidex only lasted two days. This morning I woke up, thank heavens husband was awake, I was filled with doom and gloom, I didn't want to do anything but lay there and cry. So, when I finally got up, I did not take my Arimidex and I've determined I will not take it ever again. I see my doc in March, just a month and a half away, and he'll have to try something else. This medicine is not for me. Oh, hateful fate and destiny, how I am to know the future? All I know is what I have with this medicine is so dreadful that I'd rather watch a hundred scary movies in a row than take this drug (and I NEVER watch scary movies). Yes, for me, it is like feeling frightened, reduced to tears, a hopeless mess, day after day.
The thing of it is, I read thru many pages of another thread on Arimidex, and I could not find where others confessed to this mental challenge, this overwhelming depression. Maybe they're just not used to saying things about their mental state. Me, I've got chronic depression to begin with, which is controlled by drugs, but basically I'm a melancholy serious sort, with a good sense of humor. So, I'm used to confessing to psychiatrists and psychologists what is going on with me.
I'm just glad you said something to me about how things were for you. Your comments had no effect on my decision today, I could barely read it when I did yesterday. But I most definitely read it a little better today because I needed the consoling, for I came back here to post I was quit. I found my notes on foods that keep cancer at an arm's length, and remembered I had bought a couple of those items, so I'll keep up with that a little better next time I go to the grocery store and on into the future. I feel I have to do SOMEthing to counterbalance the estrogen thing.
I simply cannot believe that all my life whilst estrogen many times over what I have now did not cause cancer, and yet here I am, postmenopausal by ten years, and I've got it. So, of course, since I'm having SO much trouble with this drug, I HAVE to question the sense of it. I can't help but think there's something else going on when estrogen is dropped, that perhaps it is not so much reducing estrogen as it is SOMEthing else it triggers in a person. When I get my brains back, I'll work on it a little more. But hey, I'm no researcher, altho I did send an email to one research group about a theory I had one time, forgot what it is now. And eventually I'll try to post those notes, if it will help others.
KAARA, I have found a supportive friend in you, my fellow cancer sister, and bless you for supporting me on this issue. It is the one shining light in this world of sadness that I can look at, to keep me sane until I can come out of this awful depression, this haunted feeling. Thank you for sharing with me similar misgivings. You give me hope when I need it the most. GG P.S. By the way, I DID do some aggressive treatment, which I did five months of chemotherapy (horrible) and six weeks of radiation, so I am covered by that, at least. It's like this pill was an afterthought when compared to those modalities.
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Once your head clears from the Armidex, try doing some looking into diet and supplementation as a complementary treatment. Aside from helping with my cancer treatment, it has given me more energy and stamina. Also, Metformin, the diabetic drug, has been researched as a means of keeping cancer cells from multiplying. You can read about it in Life Extension magazine. I think you should ask your doctor about it. Many cancer patients are now taking it even though the FDA has only approved it for diabetics. There are fewer side effects than with chemo or Als.
Hang in there and keep looking for the answer that works best for you. I wish you all the best!
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Thanks for the tips, KAARA! Talked to husband yesterday, told him eventually I would get my notes and write down the foods I should eat and what they help... there are some enzymes, three have been pulled out, that we need to stave off cancer... and I'll tape it up inside one of our food cabinets. Mind is less dim today, lower back hurts less, managed to get a load of laundry going. GG
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Tamoxifen was the drug that wiped out my brain! Wow, it was profound! I went on Lupron and Arimidex and had horrible joint pain--I'm too active for that. Changed to Femara and did fine with that. Decided I'd had enough at the 4 year point. Just more depressive stuff, mild, and I was already on Zoloft.
A year later I had another cancer, so I started Aromasin. Mild aches but tolerable. Yet at the 2 year point, I quit it. With my oncologist's blessing. I promised to keep my weight down, because it's those fat cells that store the estrogen.
It is a huge quality of life issue. For those of us with early stage cancers and low risk of recurrence, lifestyle changes (and sticking to them) may be a good alternative. For people with more advanced cancer, I wouldn't presume to say.
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Just an update: I finally rid myself of Arimidex, my body cleared it out, and counting the two days trial without it just before I quit, it's been almost a week, and at last my head is clear, emotions are mostly in check, and my back quit hurting. Miraculous. It came just in time, as I had plans to do a lot of laundry and dust and declutter the house, and no way i could have done it before. I cannot believe the difference, but I'll try something else the doc gives in March when I see him next, and I'll pay attention to the foods that will have good effect against cancer. I really cannot believe how bad things got for a while there, just awful.
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dogeyed: So happy you are feeling better! Do something to celebrate besides cleaning house:) Sending hugs and positive energy!
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