For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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glub. glub
GOOD ONE!!!!
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Linda, I've been having almost daily headaches too, ever since shortly after starting anastrazole, and that's not normal for me at all. Not bad pain, more of a dull ache, but it is annoying. Tylenol doesn't help at all, and I can't take NSAIDs. My MO never admits that anything is caused by the drugs. Just says things like "headaches are common," or "every woman gains weight after menopause" or "lots of things cause pain and fatigue"....
So, yeah, no help there. The decision will have to be mine. I couldn't tolerate tamoxifen, so far anastrazole is not as bad, so I will hang in there until I can't, and then try something else.
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Jennie, That's awful that your MO is a deny-er. Of course those things can cause problems but I'll bet you're right on the headaches. It makes you want to consider changing MOs, doesn't it? As long as you're hanging on and not giving up on anastrozole, let me ask a couple questions. One, are they 24/7 or do they arrive at the same time or is there no pattern? Two, does the amount of sleep or exercise or wine (we do love our wine!) matter? Does anything help? My dad always swore by regular Coke to help headaches. He was not a doctor. I think the combination of caffeine and sugar and fluids helped. Toss in a handful of peanuts or similar for protein. Just a thought. It does seem simplistic but it is harmless and that's always good. And let me know if, by some fantastic chance, it actually helps.
HUGS!!
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it's crazy, yesterday I was so stiff I could hardly walk, today was ok But today I was exhausted. Anyone else wake up at 9 and need a 2 hour nap in the afternoon to make it to 10PM. It's hard to make plans as I never know when I'll be too wiped out. Don't know if it's the AI. Am 4 months post chemo and it's not getting better
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ChloesMom, I don't know if it's the AI either. But do remember that your body has been assaulted for the past 9 months. And so has your mind! I read an article (medical, not one of the internet "stories") recently that said that just having breast cancer produces fatigue that can last a year or more. That's besides the fatigue from surgery, chemo and radiation. I'd say you are probably quite normal. It's hard though. The article also pointed out that this fatigue is the type that is not helped by getting more sleep and taking naps. My thought is that it is partly due to mild (or major) depression. I had been fatigued with not much ambition and thought it was due to all the upheaval with my husband along with the breast cancer. Knowing that this is normal made such a difference! You might consider antidepressants, especially Cymbalta. Some of the ladies here have had it not only help depression but also the joint and bone pain from the AIs. See what your MO has to say.
Hopefully, you'll feel like your old self in the months ahead. Getting there is hard.
HUGS!!!!
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Am already taking one and getting great counseling. Have been depressed in the past, but this is exhaustion. I am yawning and have trouble keeping my eyes open at 3PM. We were visiting friends and I had to go and excuse myself to rest when we were going to do something fun.
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Well, DAMN! ChloesMom, talk to your MO. You need to be able to enjoy life. If it is "just" breast cancer fatigue, then I guess you'll have to wait it out. I still think that all the treatments you've had have been really hard on your body and it's trying to put itself back together. And Arimidex certainly can be making it worse or be the only cause (hope not). Again, talk to your MO!!
HUGS!!!
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wish you guys in Florida could send some of that rain California's way! We're frying out here.
Just to touch on the who,e arimidex thing, I was on the verge of tossing my pills before taking any of them after I read posts from all the people with terrible SEs from taking them, not even here but on other drug review sites. I was not going to take them and my husband didn't want me to take them either. We were ready to fight with my doctors to keep me off them. My MOs are very aware of SEs they're not deniers and said my quality of life was very important and they didn't want me to suffer so if I had any problems we'd stop the arimidex and figure something out from there. They told me they thought I most likely would be ok, then I found this board and Pegg reassured me to just give them a try. , so I did and 3 mos later so far so good. I'm on the alert for anything and actually everyone who unfortunately has SEs has been great sharing what they're experiencing because it's only through being open about what we are each having go on that we learn and know how to stand up for ourselves with our Drs if they tell us what's real is not happening.
I've already had cancer once before in my 30's triple negative and the chemo kept us from being able to have kids. This is my second trip to cancer land and I'm not about to deal with this thing a 3rd time, no matter what we each have going on it's good we're all there for each other.
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Actually from what I have read the brain is the last place it will go. Thing is with HER2+ Herceptin does such a good job that it may not get to the other places but Herceptin doesn't cross the blood brain barrier. That's why it might seem to be more common place for HER2+ but in actually it's just that the treatment worked well every where else.
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Jennie - so sorry you are having these headaches also. I am also sorry that your MO doesn't admit that it could be a SE of the meds. I am lucky in that mine sees that as the likely cause and wants to find a way to keep me on an AI but minimize the SEs. I also have tried all the over the counter headache solutions and nothing helps these. I also am not a headache person - almost never had them prior to this.
Chloesmom - I also am exhausted and that came on about the same time as the headaches. I assume the headaches make me tired but when I told my MO that yesterday he said that it also could be a SE of the arimidex. I was taking mine in the evening and prior to seeing him yesterday I had thought about trying to take it in the morning to see if I had a different reaction. When do you take yours?
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I wish we could send you a bunch of it too!
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I'm glad I started this thread as I am learning all about SE's from alot of folks here. My depression worsened and so did the fatigue, weight gain too while on Anastrozole. I never thought it may be stemming from Anastrozole ! In fact the number one complaint I have given all my doctors is overwhelming fatigue and worsening depression. I asked my oncologist last Friday if the constant fatigue was a SE of radiation in 2012 and she said probably not but would give me no consideration about the fatigue coming from Anastrozole. I have been off of the Anastrozole for 6 weeks now and the fatigue has not really gone, neither has the depression. I'm not snapping out of this. Had bloodwork done yesterday to see if we can uncover anything. It will be 2 months before I start on the generic of Femara so will be interesting to see if the fatigue, depression start to alleviate. When it cools off outside will be able to go back to walking, been too hot here.
I also plan on staying on A-1's beyond the 5 year mark up to 10 years,if I can find one that doesn't have Povodine in it. We are watching the reports on the bone density and if need be will start a biophosphonate.
The one thing they keep urging me to have is a colonoscopy. Since my youth I had had reactive hypoglycemia and have tried the prep many times only to fail due to my blood sugars plummeting. Not sure what to do about that and now I am worried due to watching their reactions over my not having one done.
I scrolled up to read my original post and it has disappeared, odd...................
Jo
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My oncologist didn't say a thing about depression. When I went on a 5 week break after 3 years I found it was the drug causing it. She still denied it until my husband also said I was like my old self again when I got off it.
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Djol1950, how frustrated you must be! It would seem that if your fatigue and depression were caused by the Arimidex that after 6 weeks off it, they would go away or lessen. At least most of the ladies here seem to have had that experience. Very strange. I didn't think that radiation fatigue lasted several years but with BC anything is possible. It would seem that something else is going on - perhaps aggravated by the Arimidex. I hope the bloodwork turns up something so you can get relief. Are you on antidepressants? Please let us know what you find out! I also will likely be on AI's for 10 years.
Oh the joys of a colonoscopy! You can't possibly be the only person in the world with reactive hypoglycemia who needs a colonoscopy. There has to be a solution of some kind for you. I hope you can find an answer for this challenge, too.
Good luck!!!
HUGS!!!
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Can you use the glucose tablets? They dissolve quickly, don't think they leave residue in stomach. I use them when I crash.
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Like spookiesmom says - I am diabetic and the fasting can also cause me to have a dangerous drop in my glucose level. I tell the test center this and they usually schedule me as the first one that day - one time, on a different type of fasting test, they couldn't schedule me early and my sugar started dropping and the doctor told me to use a glucose tablet - as this would not effect the test.
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I have switched to Aromosin, but nothing is different than when I was on the Arimidex a few weeks ago. I take it at 6 P
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I take my Arimidex in the morning. Somebody posted last year that it kept them awake when they took it at night. Well, I didn't need anything else keeping me awake, so I've always done it with breakfast. I can assure you I have no trouble falling asleep (and not just at night
).HUGS!
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I was taking my arimidex at about 6 pm too - I was thinking of switching to mornings when he told me to stop taking it.
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I don't think it matters when you take it - the drug builds up in your system over time anyway. That's why the docs don't mind if we take an occasional 2 or 3 week "vacation". It's still working. So whatever SEs are caused by the anastrazole are not going to come and go suddenly or be associated with when you take the pills. (It also means that we don't have to worry about taking it at the same time every day like some things that are short acting.)
But, whatever SEs are actually caused by something else in the pills - fillers, binders, dyes, whatever - those could definitely be more quick acting. If it's causing insomnia or nausea or something, maybe try switching brands, or take it at a different time of day.
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I too am on Arimidex and my knees are the real problem. Everything else is fine, but I find it hard to get up out of chairs and I'm so stiff. I'm only 54 and feel like 80. I have mild arthritis showing on the bone scans but nothing that should cause me this much pain! I may try the Aromasin! Thank You for posting!0 -
LaureNap, Welcome. You've found the right place for information on Arimidex - both positive and negative. I'm so sorry that you are suffering. Especially when all we want is take Arimidex and keep cancer away! What have you tried to help your knees? Some ladies have had luck with Claritin of all things. And quite a few have found major relief from Cymbalta (there's a study at University of Michigan on its use for bone and joint pain). Those are things that can be considered. What does your MO say?
If you wouldn't mind, please fill out your profile and make it public. That helps us help you when we know what diagnoses, treatments you've had, and how long you've been on Arimidex.
If you have time, scroll back (or search) for RuthBru's drunken raisin recipe. It has helped other women and their joint pain. It's apparently an old recipe. Or send me a PM with your email address and I'll email it to you.
HUGS!!
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My Mo told me that arimidex does build in your system but it is at it peak - even though it is building - two hours after you take the med. He said that most side effects increase for a period of time and many will disappear as your body adjusts to the lack of estrogen. He was only talking about the side effects that are because of the lack of estrogen. He said that if the side effects are due to the fillers that I should see a change within a few days but if they are due to the lack of estrogen that I should see decreasing issues and then none within two weeks.
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Linda505, sure hope the SEs go away! Good luck. Let us know how it goes and what your MO decides.
HUGS!!
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Thanks PontiacPeg. I haven't tried anything really but ibuprofen. I'm a minimalist when it comes to meds but I have to be able to get up out of a chair so I'm thinking I definitely need to try something. I've been on it for 2 years now and it is working for me considering I am stage IV and I haven't had any new mets in 2 years. I am somewhat afraid to go to Aromasin because the Arimidex is working at this point. So possibly I should try fish oil. My MO doesn't seem very concerned about my joint pain but I haven't seen him since its gotten worse. I only see him once every 3 months.0 -
Linda,
fingers crossed that your side effects go away.
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linda505, i agree about S/E linked to lack of estrogen and I think that is what contributes to some S/E like depression and anxiety~~major hormone changes. Of course, osteoporosis, stiffness and joint pain seem also to occur for many, along with dry skin, lips and eyes not to mention the perhaps "unmentionable parts." I am fortunate not to have stiffness and joint pain but am very active with hiking, biking and yoga. I am however now on antidepressants which happily have also decreased the night sweats.
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Laurenap, Arimidex certainly is working for you! That is wonderful. I'd hate to change drugs if I were you, too. I think you really do need to try something else for the knee pain. And don't forget, sometimes it can be something as simple as shoes that can help (well, if you're bothered while moving, won't help pain from sitting).
Here's RuthBru's Drunken Raisins recipe and many swear by it. Give it a try!
Drunken Raisins'-a natural arthritis remedy
To prepare gin-soaked raisin, first empty one box of dried white raisin in a shallow container. Only white or golden raisin should be used for this recipe. Then pour enough gin into the container to cover the raisins.
Cover the container ( but not with plastic, a kitchen towel is good) and keep it covered for 7 – 10 days on the to allow the raisin to steep in the gin (sitting out, not in fridge).
Allow all the gin to evaporate to leave gin-soaked raisins in the container. These raisins keep well when refrigerated. The popular advice is to take nine of these "drunken raisins" every day. Most users report improvements in arthritis symptoms between 1 – 8 weeks of using this remedy.
Why it works:
1. Golden raisins- the ONLY type of raisins worthy of the recipe- require sulfur or sulfides in their processing to make them golden. Sulfur is an active ingredient in 2 effective natural arthritis supplements: glucosamine sulfate and chondroitin sulfate. Golden raisins come from sultana grapes and are cultivated under the name Thompson seedless grapes in the United States.
2. Sultana grapes contain proanthocyanidins which are thought to help fight infections and reduce inflammation. Grapes also contain resveratrol, a powerful anti-oxidant that is being studied for many of it's disease fighting properties.
3. Gin is flavored with juniper berries and juniper berries contain Terpinen. Terpinen has anti inflammatory properties. The essential oil that is in juniper berries contains more than 100 compounds including myrcene (an anti oxidant), catechins (anti-oxidant), and flavanoids (anti oxidant). Test tube studies have shown that juniper berries can inhibit prostaglandin synthesis. Prostaglandins help mediate an inflammatory response and increase the sensitivity of nerve endings to pain. By inhibiting their production, a reduction in pain can occur.
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Hope it works for you. One thing, make sure you use enough gin, don't be chintzy with it. I gather it doesn't taste like gin. Take about 9 a day. Can't hurt if you like raisins (Use the GOLDEN raisins).
Do talk to your MO as soon as possible! He may have good ideas for you.
HUGS!!!
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Marianeliza,
I totally agree about the depression and anxiety. I had TN bc 25 yrs ago in my 30's chemo pout me into instant menopause after the first round, there was real period of "adjustment" ( lasting a couple of years if I recall )dealing with the side effects of going from a young womans' full on estrogen to nada, nothing, no way.
I hadn't really thought about it for a long time until reading about so many others experiences with arimidex now. Hormones just never came back for me after chemo and even though I was physically fit, and a vegetarian, don't smoke or drink I still had terrible anxiety, and for a while depression that sent me down a very dark path for a while. Of course being triple negative didn't help. The one thing my MO did back then was listen to me and try to help as much as he could with meds etc until I finally was out of it but just talking with my husband about those days back then and I was a depressed holy terror and I have to give him props for hanging in there with me, I was mad at the world, and physically suffering too, it wasn't just "in my head"
I really wish they'd do more research on the proper amount of hormones therapy to administer to one, chemo is adjusted to weight, size, grade, stage etc...in the case of hormones all the posts here definitely show one size (or dose) doesn't fit all.
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MarianElizabeth, isn't it amazing what all antidepressants can do? Help with depression, joint/bone pain, night sweats! Awesome drugs. Glad that yours helped the night sweats. You look young - had you gone through menopause before starting anastrozole? I went through it about 25 years ago. I haven't had any hot/warm flashes/sweats at all. I also had very few when going through menopause. We sure are all different.
Like you, I think that the sudden withdrawal of our remaining estrogen can cause lots of problems. And mostly, it's worth it.
You are so active - that's great. Must help you feel good.
HUGS!!!
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