For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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mybee, thanks for sharing that. The Sloan dr immediately took me off and did not say things would improve.
My present dr...maybe he was trying to get me to stick it out? I don't like dishonesty.
Sigh.. He's the go-to onc in my area but I'm thinking I might look for another one.
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schatzi14 I do get water retention that my PCP believes is from Anastrozole. I'm on a small amount of diuretic. But if I eat something salty I can gain 2-3lbs. I usually take a 1/2 a pill but some days I need the entire pill. It's listed as a SE but not common. I also had trigger fingers for a while in the morning but not anymore. My fingers on my left hand are a little stiff all day. I think its because I dont' move my left as much as my right. I'm a righty.
Timbuktu if you don't gel with your onc find another one. Just because s/he is "the" supposed onc guru doesn't mean s/he is the guru for you. There are many good doctors. I truly believe here are more good ones than bad ones. Time to go shopping for another.
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Yes- Water retention was a SE for me too. Not sure why.
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I think for lots of people (not all, of course) the SEs do improve as your body adjusts. That is what I found (plus I found ways to make adjustments which made things better to; including ditching all my turtlenecks, buying more open front sweaters that I could get off easier, not sitting too long in one position etc.
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ruthbru I actually do sit for long periods at my current job and do not have that stiffness anymore. I do believe it's the combination of strength training and weight bearing aerobic exercise (powerwalk) as well as time that did the trick for me.
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A good friend, who was on Arimidex already when I started, gave this advice, "Keep moving, walk through it." I really believe that exercise is one of the BIG keys: reduces SEs, builds bones, reduces recurrence risk, builds muscles (including the heart), helps with weight control, can reduce BP, high cholesterol, helps you look better, feel better, and lets you eat more. What's not to like!
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Well one reason I quit was because there was no hope of improvement. I'm not saying that's true. But none of the docs sounded hopeful. My first doctor said that if I had problems with side effects we would just keeping trying each medication in turn. When they all were causing problems there seemed no reason to continue to go to the oncologist any more. I am still trying to get my feet back to normal after my last one month trial of tamoxifen. It's been almost 4 weeks now and it still hurts to walk most of the day. I take quite a few supplements and am soaking the raisins in gin. They have one more week to soak. I take breaks to elevate my feet and alternate with housework/yardwork. I am looking at reducing my exposure to parabens and increasing exercise. I found a couple of articles/research compilations I want to put up here but my internet is temp. down. They look at AIA - aromatase inhibitor induced arthralgia. The biggest tip was exercise.
Btw-my prev. statement of 80% quitting was wrong. Sorry. It's sig. but lower. It's in the articles. Coming soon.
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I just read the above posts. I found it hard to walk through it and exercise with all the surgeries. I had 5 surgeries (as so many of us have) in 1 1/2 yrs. I kept trying to walk all last summer and did, as well as bike ride, but was so tired!
I'm single with teens/young adults and am a homeowner. I can't really be inactive if I wanted to! That really was part of the problem. I need to do so much and couldn't take care of my responsibilities. I decided my children need me now, but wouldn't rule out another trial of meds if I can figure out how to manage the SEs. So anyway, that's why I keep following this thread!0 -
Sitting for long periods is awful. It does help to keep moving. I've started walking and bike riding and so far so good, It's as though the muscles cramp up when I'm still.
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I think so too.
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Ladies, sometimes I find myself ready to cry at the drop of the hat now that I am more than 2 months on Arimidex. The other day, I had an unpleasant experience at a nail shop and I was blubbering before I left. I was so emotionally involved I couldn't find the voice to address the issue. Never going back to that shop. I also have trouble with my right hand on the side with the MX. It is extremely week--my thumb hurts and it goes dead if I leave it lower than my heart level at night. Haven't address any of these issues with my doctor yet. Don't know which to go to anyhow. Not my PS who I see every two week since anything I say to him he tells me to see my primary. My problem is we have all these doctors--the PS the BX surgeon, the Onocologist and the Primary--who do you go to for issues? The primary doctor is the one I would think would be less informed as he only gets his notes from the other doctors. I do get anxiety and depression meds from the Primary but I don't want to go on higher doses. So I guess I'll just deal with my emotional issues. I don't know what to do about the weakness in my right hand, though.
Correction--almost two months on arimidex--I also get alway water retention and was happy to hear someone else gets it too. It is not my imagination.
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As much as I hate to hear how everyone is suffering, like you I'm happy to hear it's not just me.
I was just lying in bed reading, after an awful fight with my husband. I felt my tears welling and just felt overcome. Like wanting to throw in the towel. And then I had that thought..."is this the pill?"
What a choice we have. On the one had I'm so grateful that there is something we can do to help avoid recurrence.
On the other hand, I'm in the twilight zone not knowing if what I'm feeling is real or not. If my life stinks or not,
So confusing! And on top of it all, I'm TIRED.
Those crazy pains... just sitting there minding my own business and suddenly a piercing pain in one toe. Or one finger. So strange and unpredictable. But I just try to thank God I'm here to feel anything at all.
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During the 8 mos I was on Aromasin I was an emotional wreck. It us VERY hard to tell what is the pill and what is life. So I hear ya sister. Wish I had some answers. Try getting lots of sleep/ relaxation time. I think it helps with the emotions. Take breaks away from people. People can be stressful!
I agree on the doc thing. I nvr know who to go to for what! And there's NO coordination. Neither knows of the others specialty area. It's frustrating. You have to be your own coordinator of care, I'm afraid.0 -
dwill I tend to go to my primary if there is an issue unless I know it's something my onc should know about. Then I just let them know about it too. If you have a good primary that is aware of the fact you have been diagnosed s/he should know what to do. It was my primary that told me the reason why I might be retaining fluid was because of Anastrozole. He writes the script not my onc for the diuretic. But if the SE are bad and you know they are from the drug the onc prescribed then report to him/her
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Absolutely! They treat you like a bunch of parts, each claiming his own part. There is no coordination, no one sees the whole person. Getting away from people sounds great. Part of what I'm feeling is a kind of disgust with everyone and that's pretty new. I hope it's the pill!
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I know. My internist, who I love cuz he's great with everything else,has all my records but doesn't deal with "female stuff" or anything to do with hormones! And he is the only
one who has ALL the info.!
I think the disgust with everyone is the pill. Isn't arimidex the steroid one? I had lots of irritability with it. Altho' I got into horrible fights with my former BF on Aromasin, but he deserved it! haha0 -
mybee I believe Aromasin is the one with some kind of steroid relationship not Arimidex. Your PCP (primary care/internist) should be the one that sees the whole person. Mine would even do physical breast exams but my gyno visits were so close that I never had him do it. Sad though he is retiring this Friday. I so trusted him.
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That is sad. Sorry to hear that for you. Hopefully he will get in someone good to take over his practice. Dr.s you like are hard to find.
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He has 2 other people in his practice but they are still looking. He recommended the woman for me and the guy for my husband. My gyno (a man) and my oncs NP (a woman) recommended the same doctor so I might try her but she isn't located in my hood and may not have evening hours. I have another friend that has a good one too that I met on these boards. We have a lot of the same doctors and didn't even know it. For all I know she is recommending the same one as my NP and gyn.
So I have options but I will miss him.
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I go to my GP for everything first. He is the one who knows ME as a person, not just a body part or condition, and he has gone out of his way to find out information for me (although I have taught him a thing or two also). But you are right when you say that we have to be our own best advocates; which is a pretty scary thing. Although I would say that we who were lucky enough to stumble upon BCO have a big advantage over people trying to nagivate the whole experience on their own!
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ruth....what does he think about taking prunes for reversing bone loss? Did he at least google it before giving you the "smile"? LOL
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Actually, he added on to the prune benefits by saying that if everyone ate a serving of prunes a day, there would be a lot fewer cases of colon cancer too!
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Good for him...mine just said "I guess it can't hurt as long as you don't mind spending a lot of time in the bathroom". He poo poo'd the rest.
No pun intended!
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Had no internet access for a few days. I was on vacation and we drove back from Florida. What should have been an 11 or 12 hour trip took us 14 hours. We ran into so much traffic and accidents. Sitting in the car almost killed me. I could have gotten out and walked faster to the exit. If it wasn't for the nuts who felt they could go down the emergency exit I would have. I have back problems already and I don't think there was a muscle in my body that didn't hurt. My legs started swelling (glad to hear that water retention may be a result of meds). I am so glad to be home. It may take me a while to take another trip in a car.
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ClaudiaMetz you should see my legs after a day at work. That's even with the power walk in the morning, diuretic and walking to and from the bus (sometimes running to bus
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Well, I am with schatzi, in that while I am sad you have problems, I am glad its not just me! I swell up somedays for no reason I know. Just happens, then I have to see if its cardiac(I have a pacemaker) , or my arthritis flaring, or my joint/bone loss, or just the arimidex! I just wait a day and if it goes away, I just chalk it up to whatever! If it lasts, i think about whether I have energy, if I do its not cardiac. If I hurt, its probably my arthritis. And if I ate something real salty, I chalk it up to stupidity! LOL much love.
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I had no idea the swelling had anything to do with arrimidex! I was sure my heart must be failing. An optimist I'm not!
I wonder what other fabulous thing these life saving drugs are doing? lol the real question is,..WHY?
are the drugs hurting the heart,,,I think I've heard that is a possibility.
Are they hurting the kidneys?
What the heck is happening?
I had such a hellish night last night that I'm seriously thinking of taking another vacation from the pill.
OTH, I just finished reading Steve Jobs bio and his struggle with cancer,, that is the true definition of "Hell".
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Do those if you having problems with swelling/edema of legs and feet-do you have pain with walking too? Varying in intensity but pretty much all day?
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I did when I was on it for 6 months. It's only been one month and I do get occasional pain but nothing like before. We'll seeeee.
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No pain in legs.
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