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arimidex-side effects

124

Comments

  • joan811
    joan811 Member Posts: 1,981
    edited December 2011

    GAnne, thanks for checking in.  I do not like the idea that the arthritis could become part of my life before its time.  But I think you are right.  I just feel like this drug is causing premature aging.
    Today I tried to give a test in our planetarium as a favor to another instructor.  I started pointing out specific stars in the midst of hundreds of stars and suddenly I realized "I can't do this" and I stopped the test and called the other instructor in and said "take over"
    (turns out, he couldn't do it either - someone had messed up the settings)
    But, my point is, I used to be able to multi task and now my thinking is linear.  My brain is muddled.  My shoulder hurts, especially when I have to stretch it for radiation...my two thumbs are painful and have growths.  I am so tired from rads and I've only had 7.....not sure how I'll hold up.
    I understand why you stopped the drug.  Do you know how it affects the recurrence rate?
    I'm going to try it for awhile longer.
    Best wishes for peace and good health!

    Joan

  • GAnne49
    GAnne49 Member Posts: 30
    edited December 2011

    Joan,

    Here are a some calculators (found'em somewhere on this site they're safe to use) that might help: 

     http://www.lifemath.net/cancer/breastcancer/condsurv/index.php

    http://www.lifemath.net/cancer/breastcancer/outcome/index.php 

    http://www.lifemath.net/cancer/breastcancer/therapy/index.php

    You might also check out this forum:

    http://community.breastcancer.org/forum/78/topic/769937?page=3

    When I first saw my oncdoc, he told me that there was a 60 to 75 percent chance that I was cured with the surgery.  He qualified that to probabably closer to the 60% due to my high grade.  He also said that I'd get more benefit from the hormon than chemo.  I signed up for chemo, did some more reading and cancelled it the next day.  The hormone stuff seemed the lesser of the two evils at the time - not so sure now. 

    My oncdoc insists most women tolerate the Arimidex well - well I guess tolerance is a personal variable.  Anyway, I decided I was damned if I was going to ruin the rest of my life to try to prevent something that might not happen and might happen anyway.

    Before you make any decisions, talk to your family, talk to your docs, and read.  It's all a matter of balancing risk against tolerance.  I have a high risk tolerance, low SE tolerance (lol).

    I'm retired - got the diagnosis about two months before my end date. The guys at work used to laugh and envy me - "at least you can see the light at the end of the tunnel".  "Yeah",said I, "And it's probably a freight train."  Guess what - Freight Train!   

  • joan811
    joan811 Member Posts: 1,981
    edited December 2011

    GAnne, thanks for the links...will check them out tomorrow.
    I hear you re: freight train.....When I got my dx in July, my youngest of six kids was starting his senior year in college.  so, DH and I were ready to be tuition free and start to take care of ourselves for a change.  I couldn't believe that I don't even get a "me" break from 40 years of kids......I am glad that I did a lot of things I really wanted to do. 
    I posted on my Nov. rads thread that I experienced some non-cardiac induced angina tonight.  One of the treatments for this is to add estrogen meds.  ha ha I am suppressing estrogen and cannot take additional supplements.  so, I may have some decisions to make.
    Glad you came on to this thread.

    Joan

  • GAnne49
    GAnne49 Member Posts: 30
    edited December 2011

    Hey Joan,

    Damned if ya do and damned if you don't. 

    I think we are programmed to panic with the diagnosis.  I know I did a bit, but I've always been leary of doctors and medications.  There's not one medication that comes without side effects - then they want to give us more medication to combat those side effects and it seems a vicious circle. (My mother died from improperly monitored medication - long story; and my sister was nearly paralysed due to surgical mishap, so I have reasons for my feelings about this.) Yes, it's not something to be taken lightly, but you really do need to maintain a balance.

    I've said before, estrogen is not the enemy, cancer is.  Estrogen has many roles in keeping us strong and healthy - heart and joints are just two of them.  

    Make sure you let us know how you get on.

  • Hindsfeet
    Hindsfeet Member Posts: 675
    edited December 2011

    I am so glad to have read all your comments. Hormones pro's and cons has been a discussion on why I'm not doing chemo on the alternative thread. You confirm my fears. I was dx 10 yrs ago with RSD in my right wrist. It looked like it was spreading, but with therapy I've kept it under control. I' can't open a jar or water bottle. My right hand is pretty locked. I can't imagine taking anything that would worsen my already weaknesses.

    My new oncologist first suggested arimidex. I had already read a few of the side effects, especially bone loss. I had a bone density test 2 yrs ago and learned that I have a little osterporosis in my lower back and pre-orte- in my hip. I don't want to end up in a wheel chair or having to have a hip replacement.

    If I were in constant pain, or immobilized, I would be severly depressed. For me, quality of life is important. I don't want to feel tired, sick or in pain all the time. I also am the bread winner for my family...work. I don't have the luxery to sleep in or days off.

    So...I will not be on hormone inhibitors, or chemo....both these therapies were recommended with the herceptin. I will work on building up my immune system, and getting free hopefully soon of feeling that cancer is dominating my life. I will be having a blmx December 27th...hopefully this will be enough with the herceptin.

    And...one more comment, if you are early stage 75% surgery alone will remove the cancer, and no recurrence. So, 75% of those with early cancer are unnecessarly taking harsh drugs like chemo, tamoxifen or arimidex. Like someone said its a crapshoot.

  • joan811
    joan811 Member Posts: 1,981
    edited December 2011

    I stopped Arimidex today.  I have no idea what to expect.  Nobody gave me any instructions, so I just didn't take it.  I am hoping my joint pains go away.  I cannot risk the cardiac effects.  But I am concerned that i am not doing all I can to prevent recurrence.  I will have to reconsider when I find out what is causing my chest pain or vaso-spasms. 
    Any side effects from stopping the A.I.?
    Have a good night,

    Joan

  • GAnne49
    GAnne49 Member Posts: 30
    edited December 2011

    Joan,

    Side effects from quitting?  Yeah, a few - you feel yourself again, joint pain subsides, interest in your DH should return to normal, or not (lol).  Some things should improve almost immediately, others take longer.  The only negative I recall, and I'm not even sure about this 'cause it only happened once - a "cold flash".

    One of the questions I asked my oncdoc was about quitting "cold turkey".  Not a problem I was told, nothing special, no tapering required.

    Good luck.

  • sissyvonvon
    sissyvonvon Member Posts: 22
    edited December 2011

    I found this website today, and have been reading the many posts.  I have enjoyed reading what the other ladies have had to say. I can relate to the ones concerning the joint pain as I have experienced that.  I have been taking Arimidex since May, 2009, I went throught the chemo, radiation and herceptin without much difficulty.  I really couldn't tell much from the radiation, except redness, but I do believe the dermitis on my hands is caused from the Arimidex.  It itches terribly at times.  I also have other little patches of rash pop up here and there.  I have had the wrist swelling and pain, and one time last summer my toe and the side of my foot swelled and was painful for a few days. At first, I thought the dermitis was from detergents etc, but I have been battling this since Feb. of 2010, with no success.  I never had it before, ever.  So I am convinced it is from the medication.  Is there anyone else that has experienced rashes from the Arimidex?  Good luck ladies, and I hope you all do well.

  • GAnne49
    GAnne49 Member Posts: 30
    edited December 2011

    Hi Sissy,

    No rashes for me but it is listed as a "common, talk to your doctor or pharmacist" side effect on my insert.  "Severe skin reactions" and "alleric reactions" are also listed as "very rare" with "stop taking and call" advice.  If you've had it over a year you've probably talked to your doctor by now; I don't suppose it's that serious, just annoying.  

    Since 2009!  Gosh you're about half way done.  Good for you and good luck!

  • moderators
    moderators Posts: 8,739
    edited December 2011

    sissyvonvon, this section from the main Breastcancer.org site lists the side effects of Arimidex, and although not everyone gets every SE or allergic reaction, there is quite a list, as well as some striking benefits.

    Judith and the Mods

  • sissyvonvon
    sissyvonvon Member Posts: 22
    edited December 2011

    Thank you Anne.  Thanks to the Modertors.  I read the link for reactions.  It is just an annoyance right now.  It has not stopped me from doing my normal activities. I am using an organic natural soap right now to bathe and that seems to help alot. I hope everyone on your blog and all our sisters out there do well and live long productive lives.  Thanks again!!

  • GAnne49
    GAnne49 Member Posts: 30
    edited March 2012

    Hi there,

    Long time since anyone has had anything to add - hope everyone is doing well.  I just wanted to update my status.  I just passed my 24 month checkup - 2 years and all is good!  Though not totally out of the woods, feels good.

  • purple32
    purple32 Member Posts: 1,767
    edited June 2012

    New info On taking CA supplements ?

    Hi all,

    A good friend of mine told me that she just heard on the news, a few nights ago that ALL CA. supplements have been determined to be useless and might as well be discarded !  She also said there was " some" SE!  What ? Kidney stones or more ?  She did not recall (Aaaargh!) 

    Have any of you heard this ?  With the biosphosphates  having long term "bone SEs" , Ca. is  something I felt good about....but now ?

    I would love  a link to this recent " News".


    Thanks for any reply- esp. a PM as well.

  • GAnne49
    GAnne49 Member Posts: 30
    edited June 2012

    Well I don't take Ca supplements - my bones were good and I quite the hormone stuff some time ago but here's one link:

    http://abcnews.go.com/Health/HeartHealth/calcium-supplements-carry-heart-attack-risk/story?id=11282357

    If you Google "Calcium Supplements news" there's a whole bunch - all the new services.  The concern seems to be heart issues.   

    Natural dietary calcium seems to still get the green light with some suggestion that it's the pill form that's the problem. 

  • 1942kathy
    1942kathy Member Posts: 2
    edited June 2012

    Hi:  I, too have been on this drug for about 6 months.  At first, no problem, but some hot flashes.  Now my finger tingle, as do my toes and I do have a lot of joint pain, esp. in my right knee also.  I have arthritis, so this has only added to the joint pain.  It's a no win situation.  I am going to call and mention this, but I feel that if this drug is going to keep me cancer free, I will put up with it.  I am 69 years old and realize that this isn't easy on me at this point.  It helps to be able to talk to someone about it.  I do take Motrin 800 when I am feeling really bad, but that's all that can help me, then you have to worry about the stomach thing with Motrin.  Pay attention to always having something on your stomach when you take it.  Also I am responding to the weight thing.  I have never weighed more than I do right now.  I am presently going on Weight Watchers and REALLY going to have to be very careful about what I eat and drink!  It's a bummer!!  Try drinking lots of water and see if this helps.  Kathy

  • 1942kathy
    1942kathy Member Posts: 2
    edited June 2012
    I want to know how come one of the side effects not listed is WEIGHT GAIN!!!!   Does anyone out there have a solution for this one!!! Thx.
  • GAnne49
    GAnne49 Member Posts: 30
    edited June 2012

    I believe the weight gain is mentioned at least in some lists. I only stayed on it for 6 months and gained just a few pounds, but they are very stubborn pounds, still hanging on to the hips after almost 18 months.

    I also have osteoarthritis (genetic factors) and over the six months added several new joints to the list of problem areas plus worsening of the existing spots. The best thing I know of for that is to keep those joints moving. 

    I take the glucosomine supplements - lots - and have been for many years prior to this experience.  I do believe they worked for me although not all medical types believe in them - they work for some folks, not so much for others, but perhaps worth a try. My grandfather, mother, and sister all have had 1 to 3 hip/knee replacements.  At 63 I am still all natural several years past the age when the others got their replacements(natural is better than artificial).

    They give us this pill which makes our joints ache so it's harder to move around, and it promotes wieght gain which is harder to control 'cause it's painful to exercise - there's gotta be a better way!

  • [Deleted User]
    [Deleted User] Member Posts: 814
    edited June 2012

    Hi Ladies.

    Enjoying this thread (or NOT) but really all your comments are helping. I AM NOT ENJOYING ARIMIDEX!  I did 2 years Tamox and 'held my own with that'. I cant even remember exactly when I started Arimidex, without looking at my notes. I think it was the beginning of the year. I did all right to start with and about 2 or 3 months ago the aches and pains started up. Now I feel like 90 years old when I get up after sitting. Aching joints and muscular aches typically move between feet, ankles, fingers, thumbs, arms sockets/shoulders (more so my breast cancer side)  ( Arrrrrghh! ) 

    To make things MUCH MUCH worse I also have peripheral neuropathy in my feet where they ache, freeze and BURN (not just get hot but feel like theyre on fire). Sometimes I have to use ice. I call my feet my 'hitlers', because they dictate what my whole day is going to be about and when. I used to take meds for this but the Side FX got too much. It was doable without the meds. This was before BC, and all through after BC  I held my own with it where I was able to keep up my walks as long as its early morning and cool. Now, Arimidex has at least doubled my pain. (pain increase about 100%) I'm still doing my walks but have cut down the distance a bit. Im worried what will happen if I finally cant do it!!!Im not a sport type but walks have been exceedingly important for me to keep up with.

    I am gaining weight but I do have room to move where I can cut back meal size. Im seriously considering whether to stay on this darned Arimidex. 

    A couple of questions:

    I guess what would help is to know is if there are ladies here who have found that after stopping this med, they were able to reverse bone loss or other damage thats done? My bone density BEFORE Tamox was slighlty above average. I was meant to get one done finishing Tamox and starting Arim but the system is still mucking me around. 

    Are there any good meds that help with this infernal aching joints and what has been your experience with these?

    Thanks for any comments.

    Musical

  • GAnne49
    GAnne49 Member Posts: 30
    edited June 2012

    Dear Musical,

     I'm sorry to hear that you are having such a rough time with Arimidex.  I took it for 6 months and quit with very little resistance from my OncDoc.  I'd talk to yours about your relative risk v.s. your quality of life.  We all have different risk tolerances.

    I have a high risk tolerance - I passed on radiation and chemo completely. Even passed on the sentinel node stuff.  Tried the AI - no way was I going to make it 5 years.  I just had my 2year plus 3 months (28months post diagnoses) today and am still clear - not out of the woods yet but feeling pretty good.  It can be done!  Talk to your doc and your family - decide whats more important to you.

    EDIT:  By high risk tolerance I'm referring to the willingness to risk recurrence.  I have very low tolerance for side effects.  I refuse to ruin the rest of my life trying to prevent something that might not happen, and when all is said and done, might happen anyway.  There are no guarantees either way.  I've decided to boost my body's natural defences - VitD and more exercise, along with Aspirin (no discernible side effects so far).

  • [Deleted User]
    [Deleted User] Member Posts: 814
    edited June 2012

    HiGAnne49, Im watching these side effects and seeing whether they get worse or what. If at all possible I want to stay on it. As you say, you have to weight it all up. Not sure exactly what you mean by 'high risk tolerance'. Do you mean being able to cope with the side effects/pain etc. If so, yes we do all have different tolerances to this.


    1942kathy - Yes weight gain seems to be a problem by what Ive been reading here just lately. I decided to cut down in general the amount I eat and just in about 5 days Ive lost a kilo or a bit more. Hope that continues. It IS frustrating when you try so hard to lose weight and it just sits there, or you get to a certain level then it hits a plateau and wont go any further.

    In NZ we too  heard recently about the risks of Calcium supplements but the natural sources were deemed as OK. Anyway, I love my milk and dairy foods and always have done. I also like them as natural as I can get.  Because we are at a low latitude we dont get the same VitD levels as higher latitudes, so I have 50,000IU D3 every two weekly. My Doc is really great and listened to me on this.

    I thought when I came off Tamox the brain fade would improve. NOT so. Seems like Im not the only one in this boat either.

  • Zgirl
    Zgirl Member Posts: 2
    edited June 2012

    I've lurked on this site for over a year but am compelled to join & comment re: Arimidex side effects. Have been taking it approx. one year & have had zero circulating tumor cell results for 8 months. Seems like I have a particularly strong reaction side effect wise...exhausting rounds of hot flashes, debilitating bone and joint pain, peripheral neuropathy. Not willing to risk stopping the drug due to the aggressive nature of IBC. spent 6 months finding a doctor who was willing or able to believe me & treat me after onco put me on 3 month checkup schedule. Have found wonderful doc who is trying his best. Things that are working: med called "Zipsor" (anti-inflammatory) and a therapy called "Active Release Technique." that said, pain levels still never below a 5-6 out of 10. Trying my best to push through & regain some normalcy in life but am unsteady on my feet and often brain-addled due to pain. Onco recently suggested 2 week "vacation" from Arimidex to try to get ahead of the pain/find some relief. I know going cold turkey is supposed to be ok but have had terrible pain episode after being off 4 days. Had to dig out mild narcotics from the cabinet. Research shows taking Boniva type drugs may help side effects. Have had unpleasant reaction in past to those but willing to try again. Anyone have good results with that?

  • Zgirl
    Zgirl Member Posts: 2
    edited June 2012

    One more thing...has anyone had a chemo " flashback"? Spent a few days months after finishing treatment experiencing chemo like side effects pretty much identical to those I had during treatment. Nothing else feels like that! Wondering if chemo drugs trapped in cells can get released later? Just my guess.

  • [Deleted User]
    [Deleted User] Member Posts: 814
    edited June 2012

    Hi Zgirl, welcome to the forum, and thankyou for your post. Smile  So sorry to hear your rough time with A. Looking at your pain level, you must be putting up with a lot. I do have times of being pain free, but my feet can go off the scale when they decide to their thing. I cant imagine how diabolical it would be to have no respite at all from pain.

    I'm not sure exactly what flashbacks youre having . I can identify with chemo brain though. Short term memory is still less than stellar and most certainly on A.. Theres been a number of complaints over the years that this is a side FX from chemo, tamox and arimidex, and Im in the group that agrees with all 3.

    Being a NZer I'll have to dig into some info somewhere and see if we have that drug you mentioned under its own name or another name here. Thats always a problem for us girls abroad from the US. I dont know how practicle it would be but it would be nice to have a universal list somewhere where anyone in the world could look up a drug and see all the names its under for different countries.

  • tinker1
    tinker1 Member Posts: 1
    edited August 2012

    I have been on Arimidex now for two and half years.  It was fine when I first started but now each day is almost a living nightmare.  I have gained so much weight and am unable to lose it.  My joints ache, shoulders, hands, feet, right knee, I get headaches and the hot flushes are just SIMPLY DREADFUL!!  Also get very depressed.  I feel suicidal with them.  More like sweats than flushes - just getting worse and worse.  I exercise by swimming three or four times a week, can't walk far because my feet are so painful.  It has been suggested that I switch to Tamoxifen but that puts weight on so thats completely out of the question.  My first medication was Letrozol and that made me feel nauseous 24/7 so what am I to do.  Would so love to come off it.  I was lucky enough to just have radiotherapy and no chemo but its making me feel so depressed.  Have spoken to my hospital but they seem very reluctant to help so will just have to keep being a nuisance.  Not sure if I can go the full time of 5 years!!!!!  My tumour was not big but not small so I appreciate its a risk to come off it.  Has anyone any suggestions?

  • [Deleted User]
    [Deleted User] Member Posts: 814
    edited August 2012

    Hi Tinker1 Welcome to the Forum. There are a number of threads that deal with Arimidex, and this one seems to be fairly quiet. You might like to head over the Main page and look for the section called Tests, Treatments & Side Effects and then a Subforum called  Hormonal Therapy - Before, During and After .Theres many many posts for Tamoxifen and the AIs. 

    Im sorry you are having this amount of trouble with being on the A team. Ive been on it about 8 months and sometimes  the joint pain is AWFUL. Please go to your Doctor if you are feeling low like this, because youve got enough to put up with as it is let alone dealing with depression or something similar.

    Big hugs and hang in there because it beats the alternative of (possible) recurrence

  • marciam
    marciam Member Posts: 84
    edited August 2012

      Arimedex side effects!! I just yesterday discovered that my knee had water on it. And to my horror today that I had develped facial hair- all over the place darkening my face!

    I just survived a metastitis to the brain going thru breast cancer to the brain- removal of the tumor and radiation, to  fianlly hear soome good news- that there was no more cancer anywhere in my bodyy. BTW the arimedex did not prevent metastic breast cancer so I often wonder why bother. I do juicing and the vegan diet and believe that did more to remove my possible brain mets than arimedex. This manly look really sucks after all else I have been thru since Feb 2012. I am also permanetly disabled in my right  hand and arm due to the brain tumor.

    Good luck to all on arimidex and look into Forks Over Knives to prevent recurreance!

    Marcia 

  • B123
    B123 Member Posts: 239
    edited September 2012

    Hello Ladies,

    All of your information is so helpful and makes me feel like Im not alone and that this is "normal" with this med!  I was on Fareston prior and it was great, barely any SE and felt just great!  It cost me 150/mo and it has the SE of Endrometrial Cancer so we changed over to Armidex which now costs $3/MO big difference! But I am on it for one week now and my feet are killing me, my back hurts, hard to stand up when seated for a while, wrestless legs, nausea at times. 

    Does this pass as you keep taking it? Or from the way it sounds, it just gets worse or just doesnt go away as your body gets used to it. 

    I am scheduled for a hysterectomy end of the month but I was hoping to avoid it if the Armidex worked, now Im wondering if I should just go back to the Fareston and do the hyster (to avoid End cancer SE) and live happier (but poorer ea/mo) :) 

    Has any of you had a hysterectomy or Ooph?  Is it really necessary or can you just live on the meds and Lupron shots?

     Any advice from you wonderful ladies would be so very helpful!

    God bless you all,

    Thank you! B

  • B123
    B123 Member Posts: 239
    edited September 2012

    Tinker1, Im sorry for all your going through.. has anyone mentioned Fareston to you? It is expensive and an alternative to Tamox but without the one main ingred that makes those SE so dreadful.  It made my life so much easier and I could LIVE again.  You may want to mention it to your Onc and see their thoughts.  Mine told me that that was an alternative to people who could not tolerate Tamox or A1s.  Much luck to you  friend...

  • [Deleted User]
    [Deleted User] Member Posts: 942
    edited September 2012

    Purple

    My mother, and my older sister both had osteoporosis so badly, they were both bent over, so that when then walked they were looking at their feet. My sister couldn't even be comfortable riding in the car. Neither of them ever took calcium in their lives. On the other hand, both of my mom's sisters always took their calcium & D. Neither of them had osteoporosis. So right or wrong, unless the doctors tell me otherwise, and show good reason, I will always take my calcium.

    Of course, I am post menopausal, so my ovaries don't produce it anymore.



    Blessings

    Paula

  • Nonniebon
    Nonniebon Member Posts: 1
    edited November 2012

    I am a 3 year old survivor, a stage 3 cancer survivor,  and I am currently 67 years old.  My problem with this drug is "thinning hair" and it is extremely difficult for me.  It was bad enough that I lost my hair after chemo.  During the past 3 years, I have had 3 "trims" in the beauty shop.  No matter how little hair you have, they sure know how to charge you full price--unreal!!  I went from gorgeous blonde hair in a bob, to helpless brunette with balding spots.  I wear wigs constantly and want to know how I can make a new transition.  I have been on a lot of websites and have discovered "Headcovers Unlimited" and they are showing many beautiful scarves.  How do I make the transition from wearing a wig to now wearing colorful scarves?????   WITH CONFIDENCE!!  Please help!+

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