For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Lago: the comment wasn't ment for you. I was just saying that some of us have back problems, or other joint issues that started way before BC and these added SE's don't help when we could hardly exercise before our DX. I do believe that these scrips make our other problems worse. We all know exercise is the "MOST" important thing we can do for our BC we hear it from every doctor we see. Maybe complaining isn't what this site is for.
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Loral, Ironically if I don't keep my core strong my back problems act up again. I had a bad car accident years ago. 10 years ago it was so bad I couldn't even sit for long periods of time. After some PT and lots of exercise to build my core up my back issue never got that bad again. My neck/shoulder could use a good massage though.
I have no problem with venting. Just wanted to make it clear that I don't want anyone to ever feel that I'm passing judgement on them… especially when they are in pain. Trust me I've had it happen to me on this site when I was going through chemo.
I feel lucky that my SE are now minimal and controlled by exercise that I'm able to do. It has also helped my osteopenia from getting worse (along with vitamin D & Calcium supplements). I know there are some folks that in spite of the supplements & exercise can't stop the bone loss as well as others that are just not able to exercise do to physical limitations… not laziness. Anyone that accuses anyone here of being lazy can just suck it IMHO. Everybody's journey is different.
But if you are having bad SE your onc should be recommending options to manage it (with things YOU can actually do) or try other meds. This has been documented as a real issue with us gals taking the drug for the full course of 5 years. Any onc just telling you to suck it up when you can't even walk down the stairs needs to get a reality check.
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Brookside, I love that side effect! I think I will adopt that se! Thanks!
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Hi lago,
I am very happy that exercise works well for some people. I wish I was one of them. Here's the conundrum. I know very well that exercise is important for preventing recurrence. But exercise is not possible when I'm taking Arimidex. Even Tai Chi is beyond reach at times.
I know for a fact that it's the Arimidex because a 2 week "vacation" (self given) restored me to about 80% mobility. The pain actually started to recede within two days of stopping the little white pill.
So, I'm damned if I do and I'm damned if I don't.
My MO isn't much help at all. He prefers not to "own" the side effects. He did suggest Tamoxifen as an alternative but as there is a strong history of stroke in my family and I'm taking Wellbutrin so I declined that change. I'll probably suggest a switch to Femara at my next visit with him. Thankfully I have a helpful PCP who is working to help me control my long, long list of other side effects. I will keep taking the medication but I also want a decent QOL.
These threads ARE useful for encouraging newbies to try the medication. I understand the cheerleading and the impulse to reassure; but, there needs to be balance in the information presented. The very real possibility of side effects needs to be acknowledged up front. Downplaying them does a disservice to both the newbies and to those of us who are suffering the downside of AI therapy. There are multiple reasons why 20-50% of women discontinue the medication before 3 years are out, and those reasons shouldn’t be a secret. If we don’t complain, no one else will do it for us.
This is an interesting summary of the side effects of endocrine therapy that I think is more realistic than most.
http://www.bcsmcommunity.org/endocrine-therapy-side-effects-follow-up-from-asbrs/
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kmpod most people on these threads to come to report (not complain) about the bad SE. I have to be honest with you. After reading about them I was more scared of doing Tamoxifen or AI than chemo after reading the boards. I told my onc that at my first visit. I thought 4 months (chemo) I can do that but 5 years of hormone treatment with all those SE, Yikes! But I gave it a try and I'm doing OK now at 2.5 years.
You're right newbies need to hear both sides of the story. I did not when I came to the boards. I just heard the bad and didn't want to do it. With hormone treatment there are options including stopping but my theory is you don't know if you don't try.
As far as your onc not addressing the problem… make him/her. You are paying him/her a lot of money. Make sure they do their job. Like I said Femera or Aromisin might be less debilitating for you. S/He should be presenting these options.
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I confess, I started with femara. Complained about leg pains and MO switched me to aromasin. i sucked it up and stuck it out. Only to discover that it was zocor causing the leg pains...changed to lipitor and no more pains~!
I would surely try a switch of meds as with the statin, it was a huge difference to me.
Then again, I am feeling pretty dang good these days and in my case it is all about the gym time. But I had to work on it slowly at first so I am one to encourge folks to give it a try
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Hi all, I'm new to this thread but not BCO. Trying to read to catch up but there's so much here. Wish I would have started reading when AI was first mentioned by MO. Looking for some help, advice or just put a voice to my feelings.
Was dx'ed with bc for the 2nd time almost a year ago. Caught it early at annual mammo. Chemo not recommended this time, however Anastrozole suggested by MO. Started on it the end of 2012. There was a mistake made (probably by MO's nurse, she's a bit ditzy). Asked when I should schedule follow-up, somehow this never got answered. So I was on it for 6 months with some crazy SE's to me. Am post-menopausal. SE's included terrible sleeplessness, stomach issues (strong pains, the need to run to the bathroom to poop in the middle of the nighttime), compulsive eating, eating late/middle of the night, rapid weight gain of course, dripping wet hot flashes and night sweats. MO (who's pretty well-known in this area and a frequent contributor to another major bc web site) says he's never heard of the stomach and eating issues. Don't know about libido-related issues as DH appears to be repulsed by the sight of me undressed and that part of our relationship ended years ago.
Anyway, turns out I was supposed to return for f/u after one month but was never told. So after 6 months some SE's unbearable to continue on it. Saw MO who scolded me for waiting so long (really, should have been told to return earlier) and we decided to take a break for 6 weeks (had surgery which fit I to this schedule) to see the effects. Most of the unbearable and strange SE's are gone or minimized. So, now I'm wondering if I should go back on Anastrozole to absolutely prove these are SE's or he was thinking of Tamoxifin. Any suggestions or opinions?
Thanks for your input!0 -
Wow 2nd_time. The one thing I'd really like to do right now is knock your DH upside the head. As if this isn't hard enough to go through once, you've had to deal with it twice, and he can't accept you physically? I hope he's got other things going for him. You're well-loved by many here so consider yourself virtually (((((((((hugged))))))))).
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find a new doctor is my thought
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2nd_time_around Did you discuss any of the other AIs with your onc? Tamoxifen might be worth a try but I know some of my friends has worse hot flashes on that and felt the AIs were better… The stomach issue might be something in Anastrozole that isn't in the other AIs.
I don't think you need to go back on it to prove this was the issue. Granted some women take a break, go back on it and find the SE not as bad but that stomach thing isn't something others have dealt with.
DH needs a little ass whipping.
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Well, I think you already know that it did cause the problems! I'd try another Al before I went over to Tamoxifen. If you don't change doctors, then I'd write down everything the doctor & the ditzy nurse say in a notebook (in front of them) & then read back their instructions to them so they know your concerns need to be taken seriously.
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I did a google on Arimidex and under the lesser SE it listed stomach pain in the upper right quadrant. I'm hurting there off and on, will mention it to my MO. So it is possible just because he never heard of it.
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Stomach issues are also covered on BCO just put AI stomach issues in the search box and they'll come up.
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Good to read about SEs as I am having muscle pain in my leg and Icant get relief yet from Tylenol and heat which usually help. I walked this morning and have had discomfort off and on all day but now it is really bothering me. Nothing seems to help and I need to go to bed. I typically have not read about muscle strain and cramping all the way down my leg to the little toes so Im hoping is ISNT Arimidex - I have felt well otherwise and want to continue to take it. I should have scheduled a massage and a visit to my chiropractor in an effort the get it to "go away". I will do that on Monday as this is Sat.nite. Sorry to bother you all but at least this is a place I can report this and not feel that I am "bothering " someone. :>)
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Make sure you are wearing really good supported shoes, also maybe try ice instead of heat.
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Cloud, you are sooo not bothering anyone! In fact, you have described what I've been feeling so accurately that I think you have made it easier for me to put it into words It is the muscle that hurts. And it does go right down the leg. And I think a large part of it is the Arrimidex as I've been off of it for 2 weeks now and it's about 70% better. Such a strange side effect isn't it? It seems to make no sense. My thigh was extremely sensitive to the touch. Just one thigh. that is totally gone now.
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My sister, who has chronic leg/feet pain stemming from an accident, swears by acupuncture.
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thanks ruthbru, I'll look into it.
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Thanks Ruth and Timbuktu - glad someone is listening. I think the Tylenol is startingto help. Tim ,cant remember how long you have been on Arimidex - have you finished the 5 years?
Going to try to go to bed ------
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Cloudwatcher~~If you don't get some relief very soon, please get that checked. I developed DVT (Deep Vein Thrombosus) in my leg which was due to being on chemo. A good way to tell if its a blood clot is to flex your foot. If the pain is worse, get to the ER.
Paula0 -
Thanks to all for your support! I do know I can get it here. BC has made me see things in a whole new light, yet again. I have realized DH never had the same priorities in life (like our marriage for one thing) and this all brought it to a head. Wonder if there's a "BC made me see life clearer" thread! Ha!
Will check out other recommendations as noted.
Ruth, I already keep track of EVERY appointment in a spiral notebook (questions left side, responses and notes on right side). That's why I showed MO and nurse ditzy they never made a comment about when to return.
Thanks to all you ladies! I'd be lost without you all! ((Hugs!))0 -
I went on arrimidex April 2012. Was on it until November 2012. the pain in my hands was unbearable. I took a vacation and went back on from December to February. I did go to the Er because the pain in the leg was horrible and the back of my leg was blue and hot. No clot. I went on Femara for a while, then aromasin for awhile.
Back on arrimidex for a couple of months and then off July 14. The dr gave me a bone scan to make sure it wasn't metatstisis and thank God it wasn't. He said I had tremendous arthritis throughout my body. I also have varicose veins. I'm going to a vascular guy and an arthritis guy this month so we'll see. But since I've been off of the arrimidex, 2 weeks, I've been able to go to the gym an do the treadmill for 20 minutes. I feel better afterwards. I just generally feel better all over. I've developed Diabetes. My cholesterol has jumped up. Kidney trouble, Liver enzymes. The dr. gave me a month off but I think I might take 2 and see if I can get my body in balance again.
I don't know what he's going to do next. He suggested fish oil and it really didn't help and then they came out with that study that says fish oil causes prostate cancer and prostate has some association to breast cancer, i think.
Let's all get a good night's sleep...if we can!
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Timbuktu~~Do you take Claritin for the pain associated with arimidex?
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No I have never tried Claritan. I've taken Aleve and aspirin but I'm having some kidney problems and aleve is hard on the kidneys. Someone just told me that aspirin does some tricky things too. I hate pills but I'm on a lot of them anyway. If I can bear the pain I try to do without.
Does Claritan really help? Isnt it an allergy pill? I can't figure out the logic with some of these things
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Timbuktu~~Yes, you're right. Claritin is an allergy pill, so it's a mystery why it works for the bone pain. I learned about it on this forum shortly after dx. I postponed surgery for several weeks because of insurance issues and my surgeon wanted me to be doing something proactive, so I took arimidex during that time.
I asked the oncology nurse/practioner about it. She said, " Doctors don't often tell patients about Claritin, but we've seen it help enough to know it works. We just aren't sure why."
I took arimidex & Claritin both in the mornings. I did get some achyness on the backs of my hands, but rubbing them with aspercreme worked well. I also got stiff when rising from my bed or chair, but walking through the house once usually alleviated that.
You can get the generic for Claritin (Loratidine) which is much cheaper.
Paula0 -
I should have added....I also have arthritis along with Degenerative Joint Disease, and Degenerative Disc Disease. These were no worse with arimidex.
I take generic Tylenol for those issues, because ibuprofen, aleve, and other drugs are hard on my stomach.
I'm 62, have had a knee replacement, and walk with a cane, so if taking Claritin gives some relief, I'm taking it.
Paula0 -
Thanks 205. Explanations help, even when they don't totally explain!
Be well!!!0 -
Have been on arimidex almost 4 years. I think I posted somewhere else? I had a hyst long befor breat cancer. I have experienced very bad hot flashes, mood swings, vaginal discharge. Has rhematoid and degenerative disease going into treatment, and nowtest shows bone softening, and joint pain is worse. I am truely wanting to stop it. Cant tolerate bone meds, and am unable to take tamoxifen or femara. But everybody is different as they say on here.
its like you want to stop it, but afraid to stop it.0 -
Girls...
another benefit if we can stand it...research shows that those who DO experience the joint pain have less probability of recurrence of BC with ananstrazole than those that don't....that is a side effect I can deal with if that is an outcome...no?
Sweetandspecial...here's one for you, 20 something, on another discussion board, just diagnosed...her hubby has just decided he's no longer going to sleep with her...rebuked her when she wanted to make love last night...Jeassss...what a shit. This is her first week after diagnosis and we all know how tough that is and he is behaving this way. I am soooooooo lucky. That was just an aside I just wanted to share...
Hugs to everyone...I guess we all have our own issues...good to have a forum for sharing!
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I did hear that somewhere that join pain was a good sign. The endless question..Why? Is it a sign that we have less estrogen? I don't get it. But I sure hope it's true!
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