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Arimidex - Coping with the SE's

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  • jet3648
    jet3648 Member Posts: 8
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    Hi ladies.  Just started A 3 weeks ago and found out yesterday that I will not have Chemo.

    Will be doing rads  either 2 a day for a week or  1 a day for 6 weeks.   Dr. will simulate both to find best option.   I had morning nausea the first week on A when taking pill before bedtime.  Changed time of pill to early evening and no more nausea.  No other se's yet but will keep all ideas handy.

    How do you find the ignore button???? and how do you write quotes etc in diag. box?  

    Glad to find this quiet thread about A as I begin this part of my journey.

    Jetta 

  • KQuigley
    KQuigley Member Posts: 1
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    My body just does not like any of the cancer meds.  I started on Arimidex and worked my way through each of them -- Aromasin, Femara and even Tamoxifen.  If a side effect to any medicine is joint pain, that is where it will hit me.

     I suffer terribly with joint pain, hot flashes (after years of being freezing all the time), and now nausea and vomiting.   Honestly, if I didn't have a 14 year old, I'd take my chances of not taking anything.  

     I am going to work on eliminating gluten from my diet to see if that works.  Thank you ladies.  (Sorry for being negative, I just don't feel well :(

  • karen1956
    karen1956 Member Posts: 4,501
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    mersmom....I take my gabapentin at bed time as well as in the morning....it helps with sleep (along with the ambien) but doesn't make me groggy or tired during the day...it helped immensely with night sweats and joint pain...

    walking helps too....

    Kquigly....I too have made the rounds of all the meds and currently taking a break (4 months now) after 3 1/2 years.....life has definitely improved off of them....I have a 12 year old, but QOL is important and I am keeping my head in the sand about reoccurances...

    I know several women who have NO side effects on AI's....

  • HappyTrisha
    HappyTrisha Member Posts: 115
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    Jetta, I switched to first thing in the morning for my arimidex and it seemed to help with a lot of things, certainly with the insomnia I had at the beginning.  It's been a while but I think it also helped with the joint pain.  Interestingly enough, the pain disappeared after a short period of time and I never had it again.  Just a thought.

  • ronqt1
    ronqt1 Member Posts: 565
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    Is Gluten listed as an ingredient on food packaging. Stupid question, but gals on site refer to it quite often. If it has helped alleviate joint pain, I will surely look for it. I think I better look it up.

    Will keep reading posts.

    Hugs, Ronna

  • painterly
    painterly Member Posts: 266
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    Swimangel:

    Sorry to hear you are not feeling too well. Keeping fingers crossed that you will feel better after your drug holiday. It does actually get better after these holidays for some women. Keep posting so we know how you are doing.

  • kira1234
    kira1234 Member Posts: 754
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    ruthbru,

    I agree working is the best thing for me. The less time I spend worrying the better I am. I just had my 7th radiation treatment, and only 3 more to go. The radiologist said I have a slight burn, and to place miaderm on it. I am so black and blue I was just going with the warmth and the raw feeling. I am so looking forward to getting on with my life and the next stage of this disease.

    Karen

  • Annabella58
    Annabella58 Member Posts: 916
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    Hi ladies, 1 1/2 years here.  I am so glad to see the A team is back! 

    I do notice what I call "chinese bound feet" syndrome.  If I sit too long (and I really try not to be sitting for any length of time, as movement seems to be crucial) I get these really weird "stuck" feet.  I have developed popping hip syndrome and a generalized ache and pain here and there that jumps around my body.  Every other week is something new.

    Other than that, I am extrememly glad to be able to have something to take to keep the beast at bay.  I chose a prophylactic oopharectomy/hysterectomy to keep my estrogen down too, so some of my joint ills may be from that. 

    I do think exercise is key, and it helps with the energy levels.

    in general, I just try to stay busy and not think about it, tho does any one find the tendency to blame everything on arimidex?  I do, and it' a bit too convenient ;).

    Hot flashes went away after about 8 months, even now, I just have an occasional warm up.  I have found freezing a water bottle and carrying it, can ward off the worst of any that pop up.

    Stay well ladies and thanks for restarting this thread!

    xoxo

    annie

  • pj12
    pj12 Member Posts: 18,108
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    sunflowers,

    Since I was complaining of weakness-tiredness my docs did check my VD and Thyroid. Both perfectly normal. I was wishing it was one of those. Honestly, I can do anything I want, just have to pace myself and plan ahead. I can put  up with this better than cancer!!!

    pam 

  • HappyTrisha
    HappyTrisha Member Posts: 115
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    Side effects are such a weird thing.  My onc tried me on tamoxifen for a month and I will tell you that it was the worst experience of my whole treatment regime, and that includes A/C and every other thing I was on.  I wasn't on it long enough to know whether I would have developed additional SEs, but if had a profound affect on my mood.  I told my onc that my mood ranged from depressed to flat.  I truly hated it.  She immediately switched me to arimidex and it was heaven comparatively.  I never had any hot flashes with it.  It took about six months for the pain to kick in, and there were some extremely uncomfortable nights - though I think when I started taking it in the morning the side effects pretty much abated.

    There was never a question in my mind to stop with arimidex, even on the nights when the pain in my hands and fingers were so bad it woke me up.  If I had to deal with the side effects I had with tamoxifen, I am sure I would have been asking my onc for some mood elevator because dealing with that feeling of sadness - or no feeling at all - was a lot more offputting to me than any physical symptom could have been.  But personally my option always wouId have been to stay with some treatment modality if that treatment was going to benefit me.

    I know it sounds counterintuitive, but if you can force yourself to exercise through the pain and stiffness, it will actually make it better.

  • Member_of_the_Club
    Member_of_the_Club Member Posts: 263
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    I am almost three months into Arimidex and have had no joint pain.  Maybe its too soon or maybe its because I run.  I have also noticed my mood is better than when i was on tamoxifen.  Thats been a pleasant surprise.

  • Lowrider54
    Lowrider54 Member Posts: 333
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    On the Gluten - I don't know if it is listed - I just look for the 'gluten free' and that is what I pick.  I will make an effort to take a look on products next time I am shopping and report back!

    Hugs All

    LowRider

  • ruthbru
    ruthbru Member Posts: 46,928
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    I think important reminders have been made here that if you aren't feeling well, or 'right'; don't just assume it is an arimidex SE but have it checked out (such as the thyroid, vitamin D levels etc.), because it could very well be something else that you could be doing something to treat.

    Jetta, the way you add a quote is to go to your home page, click 'Edit My Profile', scroll down to the bottom and where it says 'signature', that is where you can type in a quote.  I have never done the 'Ignore' feature (although I SHOULD!), but I think what you do is click on their name to go to their profile page and over on the right hand corner there are some options including "Ignore this member". I imagine you just click on it. Am I right, ladies?

    Also, I think exercise really, really will minimize many arimidex SE, plus lower your chance of reoccurence even more, elevate your mood, just make you look and feel better all the way around. If you want a little exercise motivation (and/or accountablity), I go on the 'Let's Post Our Daily Exercise" thread almost every day and I know that Claire checks in on a good Stage III fitness site. So you may want to check them out if you think it sounds helpful.

    Have a great day everyone! Ruth

  • Mountains1day
    Mountains1day Member Posts: 19
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    Hi gals,

    I've been following this thread and was welcomed to chime in.  Unfortunately, some among us get a kick out of trying to make those of us who had to make difficult choices, feel uneasy simply because their perception of the facts and personal choices differed.  Hopefully, they have moved on or even better, find enlightenment.

    BC is complicated and treatment decisions are hard enough, and most of us have a degree of uncertainty (i.e. Did I do enough research?.... Do I have all the facts?.... Am I not doing enough? etc.)  The perfect answer just doesn't exist.  We just make the best decisions we can possibly make for ourselves at the time.  The last thing any of us need is to allow someone to make you feel like you may have made a bad decision or have caused yourself more harm, after making well informed decisions

    I switched to Arimidex from Femera due to SE's and faired much better.  My onc who is well versed in current research, stated Arimidex is slightly weaker in estrogen elimination and that's most likely why my body responded better in terms of SE's.  Modern science does't have the answer to exactly how much estrogen needs to be eliminated in an estrogen dominant environment yet.  (It is proven estrogen dominance is the culprit in the fueling of some BC tumors)

    So, we choose to take a one size fits all "A" pill because that's exactly what they took in clinical trials and was proven to significantly reduce reoccurance.  The jury is still out in terms of OS, we all know that, but for now I'm thanking my lucky stars I have this drug in my arsenal.

    Also, in HER/2 positive gals, (like me) data is already indicating an AI verses Tamoxifen is superior.  When you consider how long Tamoxifen has been around verses the AI's, that is encouraging news!

    Wishing everyone the very best!

  • painterly
    painterly Member Posts: 266
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    Those of you who are now taking the generic: is the pill the same size as the AstraZenica? I still have the A.Z., and I am hoping the pill for the generic is the same size as I am on 1/2 a dosage. (I'm a bit worried that I may not be able to cut it in half). 

    Thanks.

  • pj12
    pj12 Member Posts: 18,108
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    My generic made by Roxane is the same size. In fact even the bottle is identical but with a different label.

    pam 

  • ronqt1
    ronqt1 Member Posts: 565
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    Lowrider and Sunflowers:

    You gals are terrific, as well as everyone else on this site.

    I will pay much more attention to gluten free items when food shopping. Since I am still on vacation from A as of June 16, my joint pains in my hands have improved and I am not having any night sweats at all. I am basically my old self before bc, just waiting for PS to schedule my date for fipple and fat grafting and of course, most of all, looking forward to next visit with onc, which I will know as of 8-4.  Onc. wants to make sure what is causing my hand joint pains before putting me back on A or Famera. I am now counting the days until I am back on something because I am beginning to feel left out.

    .One last question: I did not ask PS dr. since reconstruction, are we allowed to do stomach crunches on machines at gym??? I was told by PS not to jump around in Zumba but take it easy. Since reconstruction, I have not touched a machine, just eliptical and treadmill and was told to go easy on them as well. 

    Hugs, hope all have a great rest of day.

  • Char2010
    Char2010 Member Posts: 362
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    Hello Ladies, I am so happy that this thread was started. I am currently doing radiation and will be starting on Arimidex at the end of August. Was very concerned about the side effects but seeing how many of you are dealing with them is such a relief.

  • Member_of_the_Club
    Member_of_the_Club Member Posts: 263
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    I think I read about a recent study that found all AIs are similar in terms of effectiveness.  That should be reassuring to those who can't tolerate one or another of them.

  • ronqt1
    ronqt1 Member Posts: 565
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    Earlier today I asked if I could use stomach crunch machine because of my hesitation with reconstruction still ongoing. Trainers at gym said don't touch it. Was just as happy doing my 45 minutes of treadmill and eliptical. It does help alleviate the stress that us gals face each day. Hoping when I get back on cancer med whatever it may be I can keep the gym activity up.

    Have a great evening,

    Hugs, Ronna

  • swimangel72
    swimangel72 Member Posts: 142
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    Sunflowers - my thyroid was tested at the start of this journey and it was low, so I'm already taking Synthroid - my levels are tested by an endocrinologist and all's well in that area, so I can't blame my thyroid for my tiredness. I'm also already taking Vitamin D supplements under my oncologist's direction - he tests my Vit D levels and they have been perfect.

    I know my tiredness and pain  were SEs of Arimidex - because each day that passes during my "vacation" I feel more and more energetic. I did continue to swim while on Arimidex - but instead of feeling more energized (the way swimming always used to make me feel) I would be dragging through the pool - my shoulders and arms tired and my fingers and toes aching with pain. Off the Arimidex (over two weeks now) I had my best day in the pool today! My energy has increased so much, I'm finally able to swim 3/4 mile without any tiredness or pain. So truly, I know my SEs were caused by the Arimidex and nothing else. I'm happy to have this vacation - but not happy that tomorrow is my Pet scan.............I'm hoping that it doesn't show up any weird things that need further testing (we all know that Pet scans have high degrees of false positive results). 

    Anyway - thanks for starting this thread - it's great to read what other's are going through!

  • pj12
    pj12 Member Posts: 18,108
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    Swimangel,

    Wishing you a good report on your pet scan. When will you get results? Waiting is terrible!

    pam 

  • loulou40
    loulou40 Member Posts: 31
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    I've been taking Arimidex for 9 months now and find it very doable without to many SE's.

    I take Glucosamine, fish oil, vid D and calcium for my joints and make sure I walk at least 30 min a day, I found this really helped with the minor joint stiffness I had in the knees and feet to begin with, I do have sore feet of a night but I think it's a left over SE from Taxol rather than Arimidex.

    I'm 40 and went into menopause from the Chemo and have have my estrodial levels and FSH levels checked every 3 months, since starting the Arimidex my estrodial level has been below 3 (undetectable) and FSH rising (indicates menopause is here to stay). I find the blood results very reasurring that the Arimidex is working very well for me.

    My BMD was is the osteopenia range before commencing so will have that checked at the 1 yr mark again and will commence Zometa to continue taking the Arimidex, my Onc thinks it's a better choice than Tamox for Her2, even though I was pre-menopausal before chemo.

    I do have hot flahes, but have chosen not to take anything for them, they have just become part of my new "normal" life, I don't have night sweats which make them tolerable.

    I do get really tired, but I work full time and long hours in the corporate world and have young kids, so just make sure I go to bed early, I have no problems with sleeping as I'm so exhausted.

  • HappyTrisha
    HappyTrisha Member Posts: 115
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    So nice to see Member!  One of my favorites sisters here whether she knows it or not.  :)

    That's what I mean about the weirdness of SEs and how someone can have an avid preference for one treatment over another (tamoxifen over arimidex, for example) and another person have the complete opposite reaction.

    I estimate I went through perhaps one month total out of (now) 5 and 1/2 years of joint pain with arimidex. I witnessed nothing else that I considered to be bothersome in the least.  However - I cannot know what I am going to feel like if and when I stop taking the arimidex!  Will I sleep better?  I don't know.  I've never been a great sleeper anyway.  Will I feel more energetic?  I don't know because I think I have what I would consider to be an appropriate amount of energy for my age and lifestyle.  But again, I have been taking arimidex for over 5 years now and so my normal is life with daily arimidex.  I know for certain that I have no tangible complaints.  I have no pain whatsoever and haven't had any for years now.  So if anyone were to query me as to the SEs I have as a result of tasking arimidex, I would have to say I don't have any SEs.

    Ladies who are new to arimidex and are having any problems with it, maybe taking it at a different time of day may help.  Or maybe other lifestyle changes that people here have talked about (someone cut out sugar - thankfully it wasn't me, and my pain still totally subsided, ha ha) could aid in making you feel better.  I think though people have to give it time.  Most of us who had SEs were forced to deal with them, even for short periods of time.  But that good news is that in many cases - and certainly in mine - they subsided.

    I am SOOOO happy to have arimidex in my arsenal! 

  • ruthbru
    ruthbru Member Posts: 46,928
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    I also think (and somebody else pointed this out already), that we have to remember that by the time we hit arimidex, we have been through months of HELL, mentally and physically. All of us have had surgery (or surgeries), and almost all of us have also had chemo and/or radiation. Each of these take a toll on the body and can have long term SE of their own.  And if you are having problems with weight, energy, sleep, or mood.......those all, for sure, can have more to do with everything you've been through than just the arimidex. Not to suggest that arimidex can't have SEs of it's own, as swimangal's post points out (and let us know how the scan turns out, swimangel), but that we should look at the whole picture.

  • jsmiley60
    jsmiley60 Member Posts: 31
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    Hi! I had my chemo - finished in April and in June had a bmx with TE's; My onc has now told me she wants me to have radiation under left arm where all lymph nodes were removed. Not sure when that will start yet, but she also gave me a prescription for Arimidex, which I filled. I came on here because of that and now have a lot of questions!

    First of all, is there a reason that I shouldn't take Arimidex when on radiation? Also I am anemic and am going to have iron injections. My iron got low during chemo, lower than surgery and is not coming back up with iron supplements. So I have low energy already, so should I wait to take Arimidex til after the iron injections? I mean if fatigue is a side effect of Arimex and radiation can cause fatigue and I'm already low energy, then why would doc go ahead and give me Arimex now???

    Anyway she also told me to take vitamin D 1500 i.u.'s and calcium with the Arimex. How much VitD do you guys take? Also why does a gluten free diet help the se's of Arimex? and why does sugar free diet help? If I have to give up gluten AND SUGAR to take these pills, I just don't think I'll be ale to do that!!!!! Lol!

  • ruthbru
    ruthbru Member Posts: 46,928
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    I don't know about the other questions (because, thankfully, I have not had SEs where I would need to consider the no gluten or sugar route...whew!), but I do know that you can do Arimidex and radiation at the same time because I asked the question on one of BCO 'Ask An Expert' conferences when I was first diagnosed. They said it was pretty much doctor preference, although your doctor might want you on it right away because of your own unique set of circumstances. If you're concerned, ask him or her about if you NEED to start right away or could wait and also the iron injections.

  • hrf
    hrf Member Posts: 706
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    Jeanne, Giving up sugar, I think, has a lot to do with preventing recurrence of bc and is not necessarily related to Arimidex. I'm not sure about the gluten. I've been on Arimidex for almost 1 year now and am finding it manageable. I also have Zometa infusions two times a year and I am using Vagifem because of the Arimidex.

  • Member_of_the_Club
    Member_of_the_Club Member Posts: 263
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    Thanks Trish!  You raise a good point.  I've always felt i tolerated tamoxifen just fine but since I've been on Arimidex my mood is definitely better, so I wonder of the tamoxifen was causing some kind of low level mood thing I didn't appreciate until I went off of it.

  • don23
    don23 Member Posts: 213
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    Swimangel - Wishing you a good report on your scan also.