Had it with arimidex
I am so sick of the really constant pain in my hips and back,wakes me up all night long.My moods I think I might kill someone soon.Does anyone know if the 50% is really 5%. This site Understanding breast cancer,They figure all the % how they rally are.And I will tell you if it 5% I am off this crap,meds are suppose to make you feel better.Did anyone else feel the side effects on this ten year old meds. were not worth it.
Comments
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I'd like to hear from people too joycey57. I was first on Femara and had drilling joint pain...so ono started me on the arimidex , Thanksgiving weekend. For the first little while I thought it was better for me than the Femara....but recently I have been experiencing the deep bone pain and not being able to sleep at night also. So I'll hold my breath with you and hope someone can interject some wisdom here!!!
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I am a 25 year survivor. Had er bc in 1984 with 5 lymph nodes involved. Onc ahead of his time gave me a choice of tamoxifin or chemo & rad. Chose tamoxifin. Was on it 9 years. I had fibroids so I had surgery in 1993 to remove ovaries and uteris. Was taken off of the tamoxifin as they considered it a risk after 5 years. Tamoxifin had bad hot flashes and didn't feel to good at first, but then okay! In 2000 had a it come back on left side but contained (carsinoma insitu). Also found 3 flat polyps that were living off of my blood in my colon. Thought it might be cancer so they removed 8 1/4" of colon and my left breast. No medicine, chemo or radiation as it was er. The colon was okay--no cancer
In Nov 2008 they found 9mm lung nodule and the onc wanted to send me to thorasic surgeon because I used to smoke 19 years ago. I told him it was er breast cancer. I had a cat-scan and then a pet-scan which showed some uptake in the nodule and lymph gland. I was right, except he wanted a biopsy on it. Was very dangerous! I had surgery on that lymph node and it was wrapped in a nerve. It has left shoulder in worse shape than it was movement wise. Now am on Arimidex for a little over 12 months. Have muscle pains that were worse when I was also on Crestor and I took myself off of it but still have pains not as bad. They move from my shoulder, then in ankles, then in hands and maybe in neck. I also have trouble walking at times due to stifness in back of legs at times and the 4th toe over on right side is trying to go hammertoe.
I am taking curcumin or phenocane which helps cut the pains so you can sleep at night. This is in the health food stores. 30 day supply (2 per day) is around $28.00 for one and if you choose the otherone is $38.00. Well worth it--contains tumeric,
Just had a cat scan this week. now there is a 3mm lung nodule on the other side--I think it is from having 25 years of chest x-rays and I don't remember how many mamograms. In the last year have had 5 cat scans and 2 petscans. You can get something in your lungs from all the rads!
I hate the Arimidex!!! I just had a 6 month cat scan and the petscan last May showed some uptake in
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April it will be two years since I started on Arimidex and I too suffer from bone and joint pain. My right hip (which always had a "little" arthritis) got so bad I needed a cortisone shot and now I go for physical therapy. It has really helped.........and of course, getting back into the swimming pool helps me too. I take advil when it's bad - that helps so much. I notice the weather changes really bother my entire skeleton...........however, I can live with this. Since the cortisone shot my hip is MUCH better and as time goes on I'm getting used to living with this moneky on my back. Sometimes the monkey is so tiny I hardly notice him - other times, he grows to the size of an ape weighing me down. But I'll be done in three years, so I'm doing my best to stick it out. i NEVER want the breast cancer "Beast" to ever return - it's so much scarier than the temporary Arimidex "monkey-on-my-back". The good days are outnumbering the bad more and more as time goes on - and exercise and losing weight are extremely important to feeling better. Still I understand that everyone's tolerance of pain is different - I hope your oncologist can recommend something to help you.
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I've been on Arimidex for eleven months. I decide every day that I'm not going to take it anymore but feel it's my only defense against a recurrence. So I take the pill and try to deal with the side effects. It helps to walk at least a mile every day. I'm one year cancer free and started my reconstruction on Jan 13. I blamed a lot of my bone pain on the meds but found I had a small cyst between L5 and L4 that was causing pain in my back, legs and knee (had an MRI) I can have that drained so no big problem there. Is anyone having problems with extremely dry skin? My face is full of red patches that are so irritated (mostly over and under the eyes and a few spots on the chin. It goes away for a few days and comes right back. I;m not a vain person but I don't want to leave the house. Makeup only aggravates the problem.
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Joycey-I can relate...but with me it is that darn tamoxifen! Been on it for 9 months. As time goes on, the bone and joint pain has gotten unbelievably out of control. So much so that I called my doc on Tues. and told him I am done! I could not live my life like that. (And I think I have a high pain tolerance). Two days after I stopped the pills, I woke up and felt incredible. I have some minor pain, but nothing like it was. Plus, yes my mood has improved. I didn't even realize that the pain was why I was so bitchy!!! I see the onc. on the 23rd. Who knows what we will try next. Good luck to you!
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Hi, I've been on Arimidex for almost a year. Had started hot flashes again but they have now subsided. I have terrible hip pain but advil or tylenol is keeping that under control and I take the PM of them to help with sleep. My tolerance for pain is absolutely zero but I can deal with this (altho I do cry out when the pain does come).
You each have to decide for yourself but as another poster (JO) who is over 5 years out and finished Arimidex last year says, the SE's of Arimidex are easier to treat than BC. I'm much more afraid of chemo, which I didn't have to do this first time. I'm certain I won't be as "lucky" if I have a recurrence. Of course chemo is not necessarily for 5 years but what that can do to the body may be lots worse than joint pain.
I do realize that my joint pain may be much less than what you ladies have experienced and so I do understand when you say it's affecting you so badly. I'm so sorry for that. Swimangel is correct that diet and exercise goes a long way toward easing some of the se's so I hope you have tried all avenues before quitting altogether.
You know, however, that your sisters here will support whatever you choose for yourself as we all respond differently.
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JO is not only my cyber-twin but my Hero!
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Thank you ladies...your experiences do help. Jo...I look at that pill every night too and dread taking it...but I do. I have always had a high pain tolerance but this is merciless! I hope I can stick it out too. (At my last appointment my onocologist told me to take it at night so that it might not affect my sleeping as badly, I had been taking it in the mornings). Hoping to hear from more ladies and their experiences on this "little" white pill that causes so much pain...
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If you are having tons of side effects on Armidex, talk to your doctor about trying something else, there are other choices. As far as being on an anti-hormone and side effects; in the end you have to decide how you'd feel if you quit and then had a re-occurence. Would that be an acceptable trade off to you? That is pretty much the bottom line question. Good Luck All!
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I can sure join in with this group. I've been on Arimidex since May 08. Started off with really bad joint paint, especially in the hands and feet. Still have that some but now my main issue is weight gain. Since starting in 2008 I've gained about 25 lbs!!!!!! My eating habits haven't changed. I know that I'm now post-menopausal since I had my ovaries removed. My onc just keeps telling me my metabolism is out of wack. Well.........am I gonna end up weighing 500 lbs before I'm able to quit this stuff and get my metabolism back right again!!! I'm just plum miserable!!!
Sending you all hugs
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I have been on since Aug. At first, I thought that the only side effect I had was my mood was bitchy more often. Then I went to my oncologist and my weight went up 7 lbs in 6 weeks! I also crave carbs which is a sign of seretonin imbalance. I have no ambition to exercise although it is the best thing I can do to improve my overall health. I've decided today is the day to start but I say that every day. I feel chubby and crabby but no joint pain. Still better than bc recurrance.
Roseann
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Thanks everybody,does anyone know if it is really only 5% decrease that BC will come back.I didnt take arimidex last nite had way less trouble sleeping still had to take vicaden in the am.I am scared of it coming back to,but if its only a 5% decrease the trade off is not worth it.And already today I dont hate all my family members like i did from arim.
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If you go to the home page on this site click on understanding breast cancer risk it says it really is only 5% decrease .Please check and tell me if I am readind it right thanks
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I'm just looking through the notes from my oncologist; it's been awhile, but we got this number from filling out a statistical survey on a website for doctors; evaluating the benefit of various treatments for my exact stage, grade, tumor size, etc. etc. It says for me, hormonal treatment gives a 40% risk reduction (of relapse). Chemo (which I also had, was a 24% risk reduction). So for me, it is really important to stay on it!
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I've been reading a lot of these posts about Arimidex as my onc. plans to switch me to it once a blood test confirms I am post menopausal. The side effects people talk about scare me, although in my mind I realize not everyone has a hard time. I've not had any trouble while on tamoxifen.
Does anyone know of a thread that addresses the incremental benefit of Arimidex over Tamoxifen? I am very confused, and as I understand it the incremental benefit is not all that great; and my insurance has a pretty hefty co pay for Arimidex. I also read something where there seemed to be some benefit in saving the AI's for use in the event of a recurrence.
I know some ladies are very good at the research end and translation in to words I can understand. I was hoping someone might be able to point me in the direction of a discussion of Tamoxifen vs. Arimidex.
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Jo----you're my Arimidex mentor....LOL.
I think about you every day when I take my little white pill
Only 3 years and 3 months to go!!! hehe
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jo yes that is what I am talking about,it also says if you just do surgery and rads. you only have10% recurance.I thinking that extra 5% does not outweigh the very bad like labor in my hips all day and night,plus I use to like my family not on arimidex.Is that true only 5% more protection? thank you joyce
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A few years ago, there was a large study called ATAC (Arimidex, Tamoxifen, and combination) that involved over 9,000 women from around the world which compared post-menopausal early stage ladies taking Arimidex, Tamoxifen or a combination of the 2 for five years. Pretty soon into the study they found that taking both had no advantages so they dropped that wing of the study. They followed the other 6,000 for 5 years and found at the end of that time the women on Arimidex had a 17% lower rate of recurrence (disease free survival) than those on Tamoxifen. For what it's worth, three friends and I were diagnosed at about the same time and have all been on Arimidex for several years (one starting on Tamoxifen and switching over once she was 'offically' through menopause). None of us has had any significant problems with it.
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Yes Joyce, it's definately true that the potential ABSOLUTE benefit for recurrence free survival with arimidex as compared to tamoxifen is just under 5%. It was actually 4.8% at the 100 month follow up point which was a few years ago.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2259436/
"...With a median follow-up of 100 months, atac is the longest-running ai trial to date, and its data continue to demonstrate improved efficacy for 5 years of upfront anastrozole over tamoxifen alone. As was seen in the last atac update and in the tamoxifen overview data, the absolute difference in time to recurrence (ttr) continues to increase even after hormonal treatment is stopped at 5 years-the "carryover effect":
- At 5 years: 2.8% ttr (anastrozole 9.7% vs. tamoxifen 12.5%)
- At 9 years: 4.8% ttr (anastrozole 17% vs. tamoxifen 21.8%)
- Recurrence rates remained lower on anastrozole as compared with tamoxifen after treatment completion [hazard ratio (hr): 0.75; 95% confidence interval: 0.61 to 0.94; p = 0.01]
Although a nonsignificant numeric excess of non-breast cancer deaths in patients without a breast cancer recurrence was noted in the anastrozole group, no difference in overall survival was observed (hr: 0.97; p = 0.7)."
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Thank you for posting those links and information.
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Joyce, I love your posts. I feel just like you. I started taking Femara in Oct. 2009...no SE
Then I was switched to Arimidex after a month because my insurance would not approve the Femara. So, long about mid Dec. I started feeling like real crap. Bone pain was appearing everywhere. I went back to my Onc in Jan and he switched me back to Femara. So it is mid Feb and I am worse than ever with pain. I just want to chuck it. Nothing I take to help the pain is working. I used to workout at least 5 days a week...not so much anymore. I don't have the energy and when I walk a couple of blocks my hips hurt so bad. I can't imagine doing this for the next 5 years. I am not a complainer but seriously there must be something to help with the pain besides Chardonay and mint chip ice cream. This discussion board has helped me so much. I really thought I was the ONLY one experiencing this pain until I read these stories. I wish you the best and I am trying to read this site and take it all in hoping someone will have that magical answer to get us through this. Time for that ice cream and a vicodin chaser before bed......sad huh?
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I started taking Arimidex in Nov. 2006, I too, got the joint pains and bone aches, weight gain, elevated cholesterol and triglycerides, osteopenia, night sweats. Well, it is now 2010 and I am still on the Arimidex.My onc prescribed Neurontin to help with the night sweats. I only take one a night and not only does it calm the sweats, it has the added advantage of giving me a wonderful night's sleep. What is more important, once I started taking the Neurontin, the bone pain and joint aches also pretty much stopped! Oh I still get the occasional stiffness, but generally only after I have been sitting in once place for a while.
Ladies, hang in there with the AI's if you possibly can. They really do reduce risk of recurrence !
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Ok mama Jo........I'll keep taking it
Thanks Choca for the encouragement.
It DOES feel good to hear from others with experience.
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I've been on Arimidex for 3 years, joint pain, bone pain, muscle pain, hot flashes, nite sweats,nausea, depression, etc. it really sucks, but i've had breast cancer 3 times sinces 2005 and last year skin cancer....needless to say i'm afraid to go off the Arimidex but I feel like i'm 90 instead of 55! Sometimes it helps to just vent!
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Jo-5 your side effects sound so much like mine. I do not have hot flashes anymore but literally freeze to death. I am also running slight anemic and they can not figure out why other then these pills. The joint pain is H-O-R-R-I-B-L-E. MY mood swings make me want to kill my husband at times. I cannot concentrate and memory is the pits....I have been on one of the aromatase pills now since December 4, 2007....I want to make it the rest of the way but oh this weight gain and all is killing me....Did I mention blood pressure has gone up and cholesterol is up? Gee, I sound like an advertisement for AI's.....lol I am trying to hang in there hope everyone else can also....my moms cousin just died after being breast cancer free for almost 40 years it popped up in her brain....Of course she was pushing 90 now so she did survive to live a nice life......
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Jude14----LOL'd...sure hope nothing happens to your husband.......hehe
I know how you feel.....blood pressure, cholesterol, weight gain...and on and on it goes:)
Hang in there!!
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Ah yes, the lovely SEs of Arimidex -- I've been taking it for 11 months and have the same SEs that many of you have written about. The hot flashes were ferocious at first, but they have diminished greatly with the addition of Effexor, which also improved my moods. I have had multiple back problems and some arthritis for several years, so I'm never sure if my aches and pains are from that or from the Arimidex. Lately I'm having a problem with cramps in my calves and very sore achilles tendons that make it painful to walk and to sleep. So far, I'm trying to live with the pain during the day and take a pain pill at night to see if this goes away on its own. I need to stay on Arimidex or possibly another aromatase inhibitor for the full 5 years to have the best chance of keeping BC from recurring. Keep the faith, ladies!
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Hi all. I am on aromasin, not arimidex, but I think the SE's for all AI's are pretty much the same. My onco gave me an anti-inflammatory called diclofenac and it has worked wonders for me!! I cannot tell you how much better I feel on it. Now, I want the weather to clear and warm a little so that I can get outside and start walking to help get some of this weight off!! It is awful!! If it's not one thing, it's another!! Hugs to all on AI's!
Kathy
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Each of us is different. For the record, I was only able to tolerate Arimidex for 11 doses. The joint pain was so severe I could not stand, sit, walk, etc. I had to lay down all the time. It has been nearly 2 years since stopping Arimidex. While the pain has decreased dramatically, it is still present. My oncologist doesn't get it. My gynecologist is convinced my pain is still a result of the Arimidex. The AI's are relatively new drugs. Not everything is known about them.
For me, quality of life overrides quantity.
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Arimidex.........love to hate it...........hate to love it. You know what I am really tired of? Trying to explain all the SE to 'others'. Not Sistahs. But the REST of the world. Everything hurts.
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