For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Reading this thread, I am starting to get a little concerned! My MO said due to my osteopenia/mild osteoporosis he thinks putting me on tamoxifen for two years to build up my bones might be a good idea and then switch to an AI. I also have high blood pressure and cholesterol issues. I will be meeting with MO on the 27th. I would appreciate any input from you more experienced ladies on what questions to ask. By the way, I am almost 64 years old and about midway through whole breast and lymph node radiation. I am taking D3 at 5000 per day, and calcium at about 800 mg. per day. My Vitamin D level was only 14 when checked a few months ago!
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Hi Siciliana (paisana) - I am on 1200 mg of calcium citrate and 5000 vitamin D3 daily. I have GERD so I switched to the citrate because I read it absorbs better, I'm borderline osteopenia and my MO wants to start Prolia injections. I'm 65 about to be 66 and will start Arimidex after I complete rads. 7 more to go! My MO wants to start me on an AI because I'm post menopausal. Never discussed tamoxifen. I would ask him why he's suggesting tamoxifen and what he thiinks about Prolia. None of this stuff is easy! We all have a variety of issues that have to be assessed for treatment options. Stay well.
P.S. a vacation in Italy is a dream of mine!
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I've been finding it helpful to read about experiences (+ and -) with Arimidex and other AI. I also checked the forum for those doing well on AI. I've been told with ER+/PR+ 100%, AI's are crucial to prevent systemic recurrence.
I have concern because of a pre-existing mood disorder. I've extremely stable for a long, long time, with one medication (a med typically used for epilepsy that stabilizes mood) but typical antidepressants, trigger problems for me.
- Have any folks with major depression, esp. BP 2 depression, come through without SE's. Was this serendipitous? Are there any steps you took to minimize mood SE's?
- Did any of you see a psychopharmacologist or other specialist for consult to help with choice of hormonal medication **or** for protective strategies (meds or otherwise)?
- In the hormonal therapy comparison chart, only one med —not an AI but Tamoxifen – is listed with mood or depression SE's. Are those with depression more vulnerable to mood SE's or so some experience mood SE's but not enough folks that it's listed in the comparison chart?
- Any complementary techniques help?
I have pre-existing problems with joint and orthopedic pain, especially arthritis in knee and some related issues with spine (stenosis and disc problems). I'm much more concerned about the mood issues.I suspect that fewer people are aware of this. Some doctors who treat lots of folks with BC on hormone therapy have said they have not seen any mood SEs.
I'd appreciate any insights. Thanks so much.
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blooming...can't answer all your questions but I'll try to answer some. Unfortunately all anti hormones can have mood SE's. Joint issues are the most common SEs of aromatase inhibitors. Of course not everyone has SEs, some have minor and some have major. I know it's not an easy decision when you already have pre existing conditions. I'm also very hormone positive but have decided not to take any anti hormones because I already have a debilitating autoimmune disease and was worried about QOL. I respect and support any informed treatment option decisions made. Good luck. We are all here for you.
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As my estrogen levels dropped the first month or so, I was an evil, mean and wicked nasty witch. After that I went back to being my normal self.
I have arthritis all over, haven't noticed any changes in those joints.
Good luck.
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blooming~I can't speak for the mood disorders other than the mere fact that immediate estrogen removal and suppression, isn't real good for emotions and moods period! I am realizing as I go through this, that estrogen is critical for mostly every function in your systems, It reaches into your muscle elasticity. There is correlation to joint issues and dry skin and increased wrinkling and sagging. I know the hot flashes are evil and rip through me like a wild fire. Being deprived of estrogen is no picnic. I can tell in my nail quality and my hair also as it's growing back. The texture has changed and the way it feels also has a subtle change as well. I get headaches from it also. It's like being slammed into menopause, and then all those symptoms are compounded massively. I can also imagine it compounding other things is a real possibility. I hope you figure out your complicated path. I understand how much it can effect who you are now. Be strong everyday. ~M~
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Siciliana, and Butterfly, I'm 67, have osteoporosis/osteopenia, and started Prolia in Dec... I have my next one in June, no se's so far, I take 1200 Calcium and 2000 Vit. D. I have high bp and cholestrol and my last visit with my pcp showed it was in the normal range... so far so good..
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How do you know your estrogen levels drop or even what they are?
I asked for mine to be tested and was told the test would only show I was post menopausal.
This makes no sense to me! My MD would not put me on a diabetic drug unless s/he regularly tested my glucose levels.
Am I missing something?
Coach Vicky
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Fabulous! Your good news is our good news. Hugs
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Coach Vicky- I asked my MO nurse the same thing about estradiol test. Since I've been post menopausal for a while now she said it wasn't necessary. I'm going to check with my MO about this and Vitamin D testing. I had blood tests done after my Dx but they didn't test Vitamin D. Go figure.
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YES! I completely agree! I've asked all my doctors and they all say it's not standard protocol which I do not understand how we are given a very powerful (toxic) estrogen blocking drug but then don't track the estrogen or the blocking! And these estrogen blockers (Tamoxifen) have been around for over 30 years and still no testing to see if taking the drug is even working!
IMO this is another case of women's health getting 2nd class treatment...nothing that will change during this administration but something we can continue to ask of our medical advisors!
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Hey blooming,
I'm having quite a few mood/anxiety-related issues on AIs. And, like you, I'm leery of changing/adding drugs since what I've been doing has been working for a long time. Unfortunately, the only solutions I have so far are lifestyle-related. My anxiety is through the roof and I have trouble being around people for long periods of time...so I go to work early, before anyone is there. I found a quiet place not far from my desk where I can go to calm down/even out if a panic attack hits at work. I often feel down and uninterested in activities with friends...so I've been leaping at social opportunities whenever I have the slightest interest because I never know when I'll feel like it again. So far, I haven't been derailed so much on the mood side that I couldn't recover, or was unable to find a work-around to keep functioning.
I also told most of the people close to me about what's going on. I trust them to a) tell me if I'm acting strangely in ways I don't notice and b) understand when I'm unable to do things the way I used to...it takes a little weight off my shoulders.
Several BCO members have made suggestions (from Effexor to claritin) to help with mood issues. I have an appointment with my MO tomorrow and this is going to be my first question for her, so maybe I'll have some more up-to-date info tomorrow and some experiences of my own to share in the next few months
~glow
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Butterfly1234,
Please post whatever you find out and I will do the same.
Coach Vicky
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Coach Vicky - will do. I won't see him until early June but will keep you posted.
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Rita: I am so sorry you had these SEs. I stopped my second AI, exemestane, just a few days ago as I started noticing depression coming back. I had just started on March 25. And that, after using Arimidex for six months and having to stop taking it due to horrible anxiety that made me nonfunctional.
I have read that some women's mood disturbance goes away quickly after they stop taking the pills; this didn't happen with me. After being on Armimidex for six months, it took months to feel better. This time -- when I only stayed on drug for a month -- I'm hoping it won't take that long. Would love to hear anyone's experience. I just keep telling myself, this is going to end, this is going to end, this is going to pass....
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Siciliana I noticed your cancer was Lobular. Latest research seems to indicate that AI's are more effective than Tamoxifen for ILC. You may want to discuss this with your Dr. Wishing you minimal side effects.
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Girl53, I have noticed that I have been going through a period of depression and anger since stoping ALS. I stopped about 3 weeks ago.
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Hi all. I've been questioning testing hormone levels ever since I got diagnosed. IMO the problem is that most MOs know very little about female hormones. Others on this forum have had their levels checked by PCP and naturopathic docs. Its a huge gap in our treatment plan. I also agree that we need estrogen in almost every other organ in our bodies. This is what contributes to all the SEs of anti hormone therapy. Our hormone levels should not be a blind guessing game with only having a recurrence being the only way we know its not working! We need to speak up and be our own advocates. Good luck to all navigating this complicated disease...
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dtad: I agree completely. When there are so many estrogen receptors all over the body, how could these drugs NOT have serious side effects for many? We need more research, and more "dot-connecting," with growing anecdotal and empirical evidence of these effects. As someone said on another thread, it's scary to think that some of us who cannot tolerate antihormonals must give up the extra protection in order to maintain some quality of life. So very scary. From the first part of this journey for me, the worst of it has been the fear of these drugs and the actual effects they have caused. I am so grateful for the good care that is available to many of us. But so torn and saddened about these drugs.
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Brutersmom: Whew. Hope you are okay today. I sometimes wish I had anger and irritation rather than sadness/weepiness.
I am back at my kitchen table this morning, sobbing and using not Kleenex, but paper towels to wipe my tears and blow my nose (and this is ON antidepressant and anti-anxiety meds). Oh, how I want this to pass. I had actually convinced myself that once my psychiatrist started me on these, I could try another AI and be safe and relatively comfortable. That was incorrect. After two such painful experiences now, I don't think I'm up to trying Femara, too. Maybe Tamoxifen at a future time, with antidepressant that doesn't hinder its action. Wow, has this been scary and humbling. Am longing for a "new normal" not dominated by drug effects and constant breast cancer fear. I know this can take a good while for many of us.
Off from my part-time job today. Am going to try to walk the dog now LOL. It's gray and rainy where I am, so I can wrap up in my rain slicker, cover my head/eyes, and not have neighbors see my face puffy from crying!
I hope this aspect of discussion of anti-hormonals doesn't frighten to death women who haven't started them yet, etc. Many women do not have these mood disturbances, of course, or experience a mild version. It's just so wonderful to have a safe place to discuss them when severe reactions do occur. It's wonderful not to be alone in this.
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Would love to hear your thoughts.
I've been on Anazstrole since Jan. 1, 2017. (surgery in Sept. 2016 and completed radiation Dec. 2016)
I also take 1000 units of calcium, 500 units of biotin and 5000 units of D3 (been deficit for years on D)
Hot flashes started up, but not awful...fatigue and not being able to sleep 4 days out of 7 - or sleeping in twilight - never really resting...and a really sore ankle that is impeding daily activity such as yoga and walking. My ankle is about 1/3 larger than the other due to swelling. I wear a boot or an ankle brace all the time.
Oncologist suggested I take Melatonin for sleep and Vitamin E for hot flashes.
- I experienced the worst hot flashes of my life on Melatonin after a single dose. Stopped.
- Kept up the Vit E but hot flashes got worse, not better - so bad I poured sweat the other night. Stopped.
I've been feeling dead on my feet, sort of cloudy from a cognitive perspective and the damn ankle pain....
So - I'm on a meds holiday for 2-3 weeks.
- Day 2 - I'm not feeling cloudy mentally
- No hot flashes so far
- Ankle pain is diminishing as is the swelling.
- I'm not tired
I hate taking the drugs..but I guess I need to for at least 4 3/4 years more. What experience do folks have with reccurance with just saying NO to the HRTs?
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I'm in a similar situation. Been on the pill about 4 1/2 years. 1200 calcium and 5000 D3 daily.
Last week for NO reason my feet really started to HURT. To the point I'm using a cane so I can balance.
Stopped the pill. The foot pain is decreasing. I'll stay off of it till they stop hurting. Have appt with MO on 17. He's not going to like it, but I won't live like this. If he wants to try something else, ok. Not tamoxifen.
This may be the end of AI for me, and I'll take my chances with rec
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Girl53, I spent the last three weeks crying at everylittle thing. I hope it continues. I hasn't helped that I am now aware of how badly I have been functioning at my job. Today for some reason I woke up feeling the best I felt in two years. It is like someone flipped a switch. I have managed to pick up most of the pieces and salvage what I could at work this last week. I also feel like I have more hours in the day. LOL My vision has improved since I have been off the drug so I am able to read and sew. Two things I love to do. I am still not back to exercising the way I want to. I hurt my foot and the tendon inflamed. When I was off the arimidex in February the pain went away. When I started Femara it came back with a vengence. It is now slowly getting better and I am doing more so I am sure that is also helping.
I keep wondering if they don't need to test hormone levels more. I get no testing other then routine blood work. I am thinking that maybe the drug does more then deplete estrogen in some women but other hormones as well and that is why we have differnent issues.
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I'm so sorry about the SE's folks are having. Hoping that you'll find ways to get relief. In the meantime, please hang in there. I'm in the haven't started AIs phase and because of concerns about pre-existing conditions, I'm trying to learn and consider things. Soaking all in, including patterns of experiences and approaches that help some. It seems like the experiences are so varied. A number of folks have mentioned that estrogen levels are not typically tested, esp by MO. Some have had PCP or naturopathic docs who've tested. Am I correct in understanding that despite decades of trying to lessen risk of recurrence using hormone suppressants, researchers have not been testing estrogen levels. So even if docs were to test our individual levels, they wouldn't be able to reference much literature trying to correlate hormone levels with SE or to try to titrate our doses of AI's?? I'm wondering if reproductive endocrinologists and specialists in menopause have literature about levels that could be drawn upon for our treatment??
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blooming...Ive been asking the same questions since I was diagnosed 2 years ago. You are correct in thinking that despite using anti hormones for over 30 years estrogen levels are not routinely tested. The only way to know if it's working they say is not having a recurrence! Which is ridiculous because you can not take them and not have a recurrence. There are no studies on those of us who refuse anti hormone therapy and probably never will be. I also agree that a reproductive endocrinologist would be a great addition to our team. I also don't think that titrating the dosage will ever happen until testing levels are done. IMO we have a long way to go in this area. Right now most people are taking them blindly, not really knowing if they are working or not. This is not such a big deal for those who do well on them. However it is for those that suffer moderate to severe SE or cannot tolerate them at all.
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Morning ladies,
There was a few people I wanted to respond to regarding the AI's and blockers, but I cannot find the posts now.
I was on anastrazole since Dec 2015. I stopped taking them on Good Friday after reading in here that others were having the same issues I was. I just never would have thought the blocker to be the culprit.
My issues were;
Increased anxiety. Worsened depression. Trouble focusing, concentrating, retaining information. Brain fog. And it seemed to really have an affect on my neuropathy-mostly my hands. They would ache sooooo bad.
So the Dr has written me a new script for exestramine? (didn't bring bottle today). I am waiting until the weekend to start because it looks like the SE's are pretty much the same.
I am on anti-depressant and anti-anxiety also; prozac and ativan.
I have felt SOOO much better!!! I feel sharper, less depressed, etc.
I thank you all for sharing as you do. I was beginning to wonder wtf was wrong with me until I read in here. So thank you.
Newbies need to know what they may face, imo. What to look for....and be weary of....
Hope all have a good day
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All: What a relief to see all the messages here....If I am going crazy, at least I am not doing it alone! I didn't want to get out of bed this a.m. because I sensed a crying jag coming on, and it came. I have been off the exemestane now for about a week, and have no idea how little or much time it may take to start feeling better. As much as I desire as much recurrence protection as possible, I just cannot live this way, with myself, or subjecting my loved ones to constant depression, anxiety, crying, lethargy, etc. At first, I thought I'd be willing to take anything to lower my recurrence risk, but I now see that I just can't tolerate these medications. It is scary. Boy do I just want to feel better.
As mentioned elsewhere here, I think the involvement of a reproductive endocrinologist would be a big help in our care. I really like my onc, but I just don't think she understands what these side effects are like.
I have to go to work today, and my mother is visiting for a week starting on Friday, and I'm wondering how on earth I'm going to get through it without 5 more rolls of paper towels to accommodate the weeping! I'm with you, sisters.
Brutersmom, SOOO glad you are feeling better. What a relief. Please keep up posted on your progress. I needed some good news today. As you mentioned in another post, I had "quivering" or internal shaking for months on the Arimidex. I was forcing my food down due to no appetite and lost more than 20 pounds (and I was slim to begin with).
Simplicity, I am also have major brain fog. The other day when writing and signing a check, I couldn't remember my own middle initial. When the receipient reminded me it was printed at the top left, with my address, I said, "See what I mean????" LOL. If only this were really funny.
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Girl53, As sad and frustrating as it is, it is a relief to read we are not alone. I think Dr's hide reports of these SE's. When I called my Onc's office, I asked if she had heard of these extreme Se's before? She said no. But it leaves me to wonder how many patients haven't figured out the culprit yet, how many think it's just the current context of their life.
It's maddening, seriously. When it is affecting your day to day, there is a problem.
Then there's the alternative *sigh*
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Hi everyone!
I asked my MO after about 2 months on Arimidex, if my weepiness was due to the Arimidex, because it just plain was NOT typical for me. She said yes, absolutely related to the Arimidex! I went on Effexor, which fixed the weepiness and hot flashes, but I couldn't tolerate other side effects (nausea, blurred vision, fatigue) so stopped it. I eventually switched to Exemestane because of the mood issues. My mood is fine now, but that is because I am taking Adderall for my chemobrain, and mood-lifting is a wonderful side effect. :-)
I hope this info helps someone
I'm seeing my MO in a couple of weeks and will ask her about testing estrogen levels. Interesting idea.
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My Primary Care did an estrogen test today.
I said I just want to know. There is so much uncertainty that ANY certainty is helpful. He also knows I am a statistcian and not having numbers drive me nuts!
He listened and understood.
Coach Vicky
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