For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Galsal - I would talk to my doctor about the headaches, if it were me. Good luck and feel better.
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Plannning on that Hortense. See the Onc NP on Thursday. Picked up some Aspirin to try for the headaches, see if it works better than the Tylenol.
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Susannah - I'm doing really well, thank you!
I have to be careful to not attribute every little ailment I get to the Anastrozole.
I had a killer headache the other day. Well, my allergies were out of control. Got them settled down and the headache went away. I had really bad joint pain in my fingers, but I've had arthritis in my left hand for ten years. I had been doing a lot of grasping and pulling actions with my left hand, and it acted up. I felt kind of queasy for a few days, but everyone I knew was getting the stomach flu.
So when I don't feel well, I try not to automatically say "It's the Evil AI!!!!"
I'm 61 years old. I'm going to have off days, sick days, and tired days, with or without the estrogen-sucking drug.
So yes, I feel like I'm doing well! And you? Well, I hope!!!
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Hi, all. I hung out for quite awhile on Lowrider's long-running Arimidex/AI thread, but I haven't posted on this thread yet. Here goes....
I've been on Arimidex/anastrozole for almost 4-1/2 years. I started in June '08, 3 weeks after finishing 4 rounds of Taxotere/Cytoxan. I don't know if I'll get to graduate after 5 years. My med onco says I'm in a "gray zone" between those for whom she recommends additional years on AI and those who get to stop after 5. There is no question on anyone's part that I'll complete 5 full years, though.
The SE's I've had on this drug have been typical - hot flashes, vaginal dryness, aches and pains, thinning hair - but for me they've been mild and manageable. I was already 5 years into natural menopause when dx'd with BC, and my Arimidex SE's aren't much different from what I'd be experiencing anyway at my age (60).
I'd had some osteoarthritis in my neck and hands for more than 10 years, so it's hard for me to distinguish the aches and pains I feel now from the ones I had pre-BC. The vaginal symptoms are annoying (just ask my dh), but, again, I'd already started down that path before my dx. Hubs and I use lots of Astroglide for that problem; I take an occasional ibuprofen and/or Aleve for the achiness, which can make it hard to fall asleep. I do think I have bouts of mild depression that I didn't have before - sort of "blah" feelings for no reason, that last half a day. The hair-thinning is something my hair stylist and I notice and talk about, but, hey - with Taxotere/Cytoxan, I was totally and completely bald. How does this hair thinning compare to my chemo experience? Not even remotely similar. That's about it for the annoying SE's.
The SE I was most worried about is bone thinning. That seems to be the most serious of the well-established SE's of Arimidex and Femara. For me, though, it has not happened: I have not lost bone after 4-1/2 years of Arimidex/anastrozole. My med onco ordered a baseline DEXA bone density scan back when I started on Arimidex. It showed mild osteopenia in my lumbar spine, but my hip/femur was fine. I had another DEXA 2 years later, and it showed the same thing in the same places. Just 3 days ago, I had yet another DEXA (they're done at 2-yr intervals at my center), and once again, there's been no change at all since my baseline scan.
That's very good news, of course. I'd been really stressed about the possibility of needing a bisphosphonate, something that my docs have been resisting as much as I have. Now it looks like I don't have to worry about it. My med onco said if I was going to lose significant bone from Arimidex, it would have happened already (not to mention the 5 years of menopause that preceded my BC dx). My osteo doc (an endocrinologist) said things are so stable that she doesn't even need to see me for my next bone recheck until 2014 (!).
Please understand that I don't mean to minimize the problems some women have on Arimidex/anastrozole. All I'm trying to do is point out that it isn't necessarily going to be a horrible experience, and everybody doesn't develop osteoporosis on these drugs. There is a lot of variability. My advice is to give it a try, and see how it goes.
otter
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Hi blessings, I'm doing pretty well adjusting to Aromasin, 2 weeks now. Tired, some reflux, not bad. I have developed some anxiety, am hoping that subsides, just as the fatigue and reflux have.
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I started Arimidex after 5 years of Tamoxifen. I have had osteoporosis for a while, starting after hysterectomy at age 41. Take calcium +D and I think that slows down the osteoporosis process. (I do a bone density scan once every 2 years). I didn't have any strong SE with the Arimidex. Some hot flashes but nothing really much or serious. My knees feel stiffer so maybe that's due to the drug???
I am at this point very busy with my right hand that totally stiffened during tendinitis of the wrist because of under-use of the fingers, and I doubt that the drug has anything to do with the issue. I am going to ask th MD about it. In any case, as I don't seem to have serious side effects, I will just continue taking it. After all, if it's a choice between CA and osteo, I go for the latter!
In the meantime, this thread is very interesting and indormative, because the only one that I have spoken to who took Arimidex, was also fine with it. Sharing with all you gals, definitely broadens my horizons.
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Ruthbru, I appreciate your common sense approach. This is not to diss any of the side effects that others are having. (I had taxotere side effects that others didn't, and my nails are still trashed 4 mos later...unusual)
but hopefull overall the SEs are minor or tolerated. But not 10 years, I hadn't heard that before! I am 3 mos down, 57 to go...
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Otter: Thank you for your post!
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junif... Be brave and hopeful. I agree with ruthbru that the ones with the most severe SE's are the ones who post most often, hoping for help/advice/comfort. I made the mistake of too much google/searching/web exploring for my own good. Had read horrific accounts of pain, weight gain, hair loss, etc. I will have been on anastrozole for 11 months, tomorrow... I have past-shoulder length hair, and have not had thinning. I had a few aches (and thought, here-it-comes), but am no longer having any at all. I teach full time, on my feet all day, walk-trot on my treadmill, and have not gained weight. I have had no hot flashes at all (but did have cold flashes--odd!--that have stopped.)I had some energy issues... tired, tired... but since adding magnesium supplements, am far better. (Along with the anastozole, I have been directed to take 1800 mg calcium citrate, 3000 IU D3, 500 mg magnesium, and a multivitamin. I follow it exactly, and have been told during appts that following directions is the path to feeling better, so I can't complain.) I do wish you the best, with long-distance hugs and prayers. So many ladies here can offer more wisdom than I, having been in the trenches longer... but it's truly doable. My students don't even know I have bc... Enjoy tonight's meteor showers. Always look up. :-)
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Skittle, Dassi and Otter--thanks for those posts--I'm sure a lot of us appreciate you guys telling us about your experience....it helps IMMENSELY!! Thanks again
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Otter- That's great news on your bone density tests. Its encouraging to know that Arimidex doesn't always mean you lose bone. My onc has really been pushing me to start a bisphosphonate for over a year now. What have you been doing to protect your bones? Sounds like it worked
Skittle, thanks for the info about magnesium. That's something I think I need to add to my daily vitamins. I do 2000 of D3 and so far that's kept my Vit D level up in the 60's.
It is always good to hear from those that SE's aren't as bad and get tips on how to make SE's better for us all.
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Wow, I'd be thrilled to have a 40 for my D! Sadly, when it's a mere one point above the bottom of "normal", many don't think there's a problem.
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Lee7...google "bone density and prunes"...interesting stuff!
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Galsal I was in the single digits and got mine up to 79 with supplimental D (and calcium). I would love to eat prunes instead but they upset my stomach. I read about prunes a year ago.
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Lago...not sure if they help, but they can't hurt and I love them! Must admit I am not diligent about taking them because I forget. Many can't take them because of the fiber element but for me they are OK.
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It's not the fiber… that's good for my IBS since I can get the big C with animal fats. It just upsets the stomach. I can't eat strawberries anymore either. But I can eat black raspberries and craisins. Go figure.
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Yeah foods are strange...just like the prunes...they are good but plums don't work. Wonder why drying them makes a diff...must just be the boron in them that perhaps plums don't have. Shame about strawberries!!
Actually I just read a study from the EU that says prunes are not a laxative. Seems to have that effect on many people. I have come to the conclusion there are too many differing opinions on just about everything. LOL
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Lee7, I'm embarrassed to admit this, but I'm not doing anything spectacular to keep my bones healthy. Yes, I've been taking Ca supplements (calcium citrate = Citracal) and Vitamin D3, but not in the megadoses others are taking. And... I've turned into a slug. I'm afraid I don't get the regular exercise we're all supposed to get.
I probably have been consuming 800 - 1,000 mg of calcium and 1,000 IU of Vitamin D3 in supplements, plus calcium here and there in my diet. (I like dairy products, so I do eat some cheese and/or yogurt most days.) The amount I take fluctuates from day to day because I have a fairly narrow window in which I can take my Ca supplements. We're not supposed to take more than 500 mg at a time, because any more than that will not get absorbed across the intestine. Besides that, I take some prescription meds first thing in the morning and right before bed that can't be taken within, oh, 4 hours of calcium and magnesium supplements. So, some days I have to skip some of the Citracal if I've waited too long past suppertime. <sigh>
There's one other medical factor in my case. For a very long time, I've been secreting too much calcium into my urine. It's called "idiopathic hypercalciuria," and it can cause kidney stones (which I've had). As we age, it can also contribute to bone loss - in fact, idiopathic hypercalciuria is considered an under-diagnosed "secondary" cause of osteoporosis in menopausal women.
My hypercalciuria was finally controlled when an osteoporosis doc (an endocrinologist) put me on a dirt-cheap diuretic that "conserves" calcium. I started taking that drug shortly after I began taking Arimidex. So, nobody knows exactly what has kept my bone density stable these past 4-1/2 years: is it the control of my hypercalciuria? Is it the supplements I've been taking? Is it the fact that my bones were really healthy (T-score was a nice, positive number) leading right up to the onset of menopause? Is it the fact that I was already 5 years into menopause before starting Arimidex, and had already lost most of the bone I was going to lose?
Based on zero data, I tend to favor the fact that my bones were really strong leading up to menopause. I know that because a previous endocrinologist insisted on doing DEXA scans (pre-menopausal) to see if the hypercalciuria had affected my bone density. (It hadn't.) I consumed a lot of dairy products when I was a youth - even in my college years; and I walked at least 4 miles a day throughout my late teens and 20's. (Don't you wish you could turn back the clock and do certain things differently?...)
Other than that, it's a mystery, and of course YMMV (your mileage may vary)!
otter
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Talking about vit D - besided the calcium with D that I take (I hate them because they are these big pills and I need 2 each day. I admit I sometimes skip), I also get vitamin D3 drops. My MD tells me how many depending on the results of the blood test. I used to forget, but shetold me I can take a weekly dose, drop them on a piece of bread and that way I am more likely to remember. It does do the trick of keeping my level OK. I don't know about you guys but I sometimes balk at taking all these pills. Yeh, it's what I need, so I do take the most important ones each day. I guess I should look into magnesium as well.
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Thank you for refreshing this topic!
When I read dngdonnelly's I thought "I could have written that." I've been on Anastrazole for one year, following a lumpectomy and radiation. My doctor just took me off of it for three weeks to see if my extremely sore ankles and feet and thumbs and lower back are SE from this drug. Honestly, just getting out of my desk chair at work is a struggle that others have noticed and that make me uncomfortable for them to see. My hair has also thinned, but not too noticably. On the bright side, I have not gained a pound!
But, in just five days of not taking it, I woke up this morning keenly aware that I wasn't limping to the bathroom or trying not to fall down the steps! I feel like myself again already. Thank goodness.
I find some comfort in knowing that others have had the exact same experience, because it's tough. I want to continue treatment, but man, this stuff threw me into "old age" way too soon! I'm hoping there is an alternative that I can take, but if not, I'll just hobble along. One down, four to go. We can do it, gals!
Again, thanks for sharing. I'll report back after I see the doctor again. In the mean time, I'm going to enjoy feeling like me for a while.
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Out of curiousity, did any one get a skin rash while on this? It doesn't itch or any thing, it's just there. Thankfully, not in a visible place.
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"I woke up this morning keenly aware that I wasn't limping to the bathroom or trying not to fall down the steps"
cb~ this is EXACTLY how I feel.., limping, struggling to walk down the stairs, getting up from a chair.., I've been on Arimidex (only) since August 1st. I don't know what to do! It doesn't sound like the other AI's are much better. I take 2000 IU Vit. D3, 1500 mg calcium, B complex w/ 500mg vit. C & other supplements (in that B complex).
Once again, I am coming out of my "state of denial" and beginning to face my new reality (life with what I call the 'tin-man syndrome'.) I find that one of the hardest things to face is the lack of understanding and therefore, lack of support because "you're done with treatment now, right?" And it's not their fault.., there's so much more education to be done. This is just one of those life situations that you can never really grasp until you've experienced it. Surely my supporters try, but they really have NO idea of the pain and discomfort associated with AI's.
I want my old life back. Before cancer. Although during treatment I was so comforted by all of those who supported me. They sent cards; they called & e-mailed; they came to visit; they asked how I was. And now it's back to reality..., my mailbox is full of bills; my answering machine is full of political calls; my e-mails are full of spam; and when they ask how I am, it's not the same anymore.
So thank you cb for pulling me out of my denial. I needed that. Now I'm back in the fight..., just don't know where to begin when it comes to the AI stage. I welcome any advice from all the brave ladies here on bc.org!!!
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I walk like a platypus to the bathroom every morning. Once I finish peeing I walk normal again. I know I'd be a lot worse if I didn't work out.
C-Squared I'm going to drag you the the Strides event next year. It was the first time for most of us and we all loved it. I think mostly because we (Illinois Ladies group form bc.org) were doing this together. WE GET IT. Invisible did it and she was 2 or 3 weeks out from last chemo. She was on AC and had a rough time too. Joan still recovering from back surgery. What is nice about this walk is its not competitive and along the lake.
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I have been on Arimidex (well, generic Anastrazole) for about a year now. I have done really well but do have joint pain. Especially in my knees. My hands bother me from time to time but so far all is manageable. The knees are more annoying as they can really get stiff. I try to keep moving as much as possible.
The hot flashes/night sweats are the worst. I sleep in a cotton t-shirt and cotton shorts. I just keep a clean dry t-shirt handy as well as a fresh pillow. I wake up soaking a lot. Sometimes I can't seem to regulate my temperature in the daytime. I go from freezing to sweating in a manner of seconds. Hard to know how to dress for this!
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I just love you ladies. Somehow the warmth in voices, the humor held at bay by aches and frustrations, the patience that comes with this mess... it all comes through. I feel so blessed to have found this discussion board. As for those who just don't get it, you might refer them to a youdon'tlooksicktome site, and read the story of spoon theory. It's an extended metaphor of what we each encounter on a daily basis, and is reachable for anyone with the willingness to read (co-workers, friends, those whose concern stopped when you became more "normal.") C-squared--I understand the bills/spam/political calls let-down. And I fully, completely, like you, want my old life back... But, we all muddle forward together. lago... platypus! Can't help but admire your spirit! And dassi52--only this week did I hit the wall with the gigantic pill can't-take-one-more you are feeling. I skipped several calcium elephantine pills and couldn't force myself to take one more... But guilt and worry of what-ifs crept in, so now I'm being good again, and forcing them down.
Does anyone know of a small yet high-content/mg calcium carbonate? I bought an enormous bottle advertised as petite, but they, too, are bigger than prenatal vitamins, and I have to take so many! sorry to complain... I think I resent them since they are much of what makes this bc so real on a daily basis, so I can't pretend all's well. Silly, I know. But I wish each of you a strong day with lessened pain and increased joy.
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I just found this post and was surprised to see how many of us have developed trigger thumb, sore fingers/thumbs since taking arimidex. I am seeing my oncologist again tomorrow, and that means I have been suffering with these painful thumbs for the 3 months since I had seen her, plus about a month before that when it first started. I knew to expect joint pain, but since my legs, neck, back had hurt during chemo and the neulasta shots, I just figured those would be the joints to hurt now. I didn't even attribute my thumbs to the arimidex until I saw the onc, who wanted me to take ibuprophen and try to live with it since the drug is supposed to be so good for us. Anyway, several of you mentioned having this problem, and many said that eventually it got better or just stopped hurting, etc. Did anything help? Did anyone consider seeing a bone doctor for a shot or surgery or anything? I would love to think that I would just wake up one day and realize that it was better.
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skittles
..I agree, this thread is special. It has helped me a lot.thanks otter for all your information!!! You brought up some good questions that I want to ask my onc about. I was 3 years into menopause, and 3 months on Arimidex before I had my first DEXA scan. I'm now thinking/hoping my osteopenic scores might stay stable instead of getting worse since I started eating a lot more calcium right after that scan.
galsal, I don't know if a skin rash is a common SE of Arimidex, but you might want to ask your onc about it. I get nervous about rashes because that makes me think it could be an allergic reaction to something. Of course, we're in FL and it could be the heat!
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hello ! i have read page one and 25-sorry! i promise to go back through someday!
yesterday, i started arimidex...i THOUGHT i was going on femara but doc decided differently=he gave me samples and said try it for two weeks- if no major bone pain then fill the scrip he gave me....
i had hysterectomy and oophrectomy in '99 and not a flash at the time so i am curious about this!
right now i am taking mine in the a.m. when i take the other necessaries so i won't forget- i'll be curious to read about those of you who have tried other times....
well- off to read more!
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Thanks Lee. RN at work seemed to think it wasn't fitting most things. Yep, seeing the Onc's NP on Thursday so definitely will speak up about that and the headaches have had almost daily since the Lupron and Arimidex.
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lumpynme--With reading endlessly about experiences across the planet (before I took my first pill, being truly afraid of it), it seemed to make sense to me when frequent concensus suggested taking it in the evening. Opinions I read seemed to suggest SE's are stronger sooner after swallowing than later, so suggestions led to taking it later--to hopefully sleep through the "yucky" part. I began taking mine about 6pm and continued to... Can't say whether it works or not, since I've never switched to mornings to test the theory. I take a couple of calcium and one magnesium in the morning... calcium and D3 mid-day... calcium, magnesium, multivitamin, and anastrozole sixish... and calcium before bed. My onc seems pleased so far, so I stick with it. Good luck to you. Feel well.
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