Arimidex - Coping with the SE's

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  • NativeMainer
    NativeMainer Member Posts: 10,462
    edited December 2011

    Any one want to guess what me and my new couselor are talking about currently?

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2012

    SE's of AI's - NM...let us know if you learn anything new......

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  • marybast
    marybast Member Posts: 138
    edited December 2011

    Sandeeonherown, I got my estradiol results and it's way low, only 11, so I'm going to explore an alternative and see if I can keep it relatively low but allow it a little bit of a range... our brains need some hormones to work properly. From www.hormoneresource.com/hormoneresource.com/Brain_Fog.html (yes, the URL is repeated): "Changing hormone levels after our mid-thirties often trigger brain fog, particularly decreasing estrogen levels. The effects of estrogen on brain function are profound (because) women... have more connections for each cell than men, which allows us to use several areas of our brain concurrently (and) we need more energy and increased blood flow to fuel cognitive tasks. One of the main functions of estrogen (and thyroid hormones) is to ensure optimum blood flow, as low estrogen results in less blood flow and therefore, less brain function. On the other hand, too much estrogen increases brain cell excitability, so when estrogen is insufficiently balanced by progesterone, your ability to focus can suffer."

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  • mybee333
    mybee333 Member Posts: 1,189
    edited December 2011

    Native - was going to say well said but others beat me to it. Smile

     To go back a bit, I am quite concerned regarding the potential for sexual SEs with the AI's. I am not currently dating but I hope to again at some time.  I think it will be tough for find someone who can work through these sexual issues and be patient.  If the Arimidex causes me to lose my sexual functioning that will be a tough trade-off and it's safe to say I would consider not taking the drug. Having fibromyalgia, headaches, arthritis, I am used to living with pain. I can live with the negatives.  But taking away the positives starts to make life not worth living. I am presently off of Arimidex, as my doctor has ordered, due to the severity of my headaches, but I imagine he will start me back with it or suggest something similar soon.

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  • TinaT
    TinaT Member Posts: 2,300
    edited December 2011

    mpeaches - Hi!  Today is my cancerversary too!  One year ago I had my first round of biopsies and later that day got "the call" about the first of my two cancers.  I've had a difficult year with my BMX and reconstruction and have been hit at the oddest time with tearfulness.  Today, however, I'm doing fine...go figure!  Wanted the day to mean something, to be symbolic and to show some progress in my journey.  Finally gathered up all my cards and letters and cleaned out my bra drawer of all the pre-BC bras that no longer fit me.  Feels good!  Doesn't mean I won't tear up tomorrow or the next day, but since I can't turn back the clock or pretend like this never happened I'm trying to be proud of how well I'm doing and focus on the good things in my life.

    Hang in there....one day at a time, right???

    All the best!

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  • Sandeeonherown
    Sandeeonherown Member Posts: 1,946
    edited December 2011

    Well, had my appointment with my breast surgeon...I realllllly like her..straight from the hip, no BS kind of gal..we hit it right off last summer...she asked what was new since she had seen me and I said 'radiation went well, started tamoxifen, had a heart attack, went off tamoxifen and started arimidex..." and then I felt tears gushing..good lord...she ook one look at me and said ' Go off it...you are 49...we got it....you have .25% each year of getting breast cancer again on the arimidex and .50% off of it...live your life..if it comes back again, a. there is no guarantee that it will be ER+ in the first place and b...we will deal with it then...we will book another mammogram in 6 months....this is not you"...it felt sooooo damn good to hear someone just say don't take it....behealthy..get back to the gym every night...I have had zero energy for anything except sleep and I still wake up exhausted....I worry constantly about arimidex and now the naproxen causing heart stuff...would rather live my life....whatever that is right now..all I know is that on arimidex, i don't feel like I have one...so...for now at least...I am done with it.

    and on a sad note, a friend's mom who was diagnosed this summer with BC and mets to the lungs died a few hours ago....so sad.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2011

    SunflowersMA, my acupuncturist (also an MD) scripted PT for me.  The PT is working on my leg muscles but now you tell me muscle weakness is a SE of the AI.   So doing PT to increase my muscle strength seems to be like pushing against a solid wall!  Guess I'll share that info with him tomorrow and then he can work me even harder.

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  • mpeaches
    mpeaches Member Posts: 155
    edited December 2011

    Mybee333 - I've been on Arimidex for about 5 months, and haven't had any sexual side effects.  Desire is good, and well, I've ALWAYS had problems with needing lubrication, but the amount needed hasn't changed.  So, it's not always a concern with this drug!

    TinaT - Happy Cancerversary!

    Purrs all,

    Jenn

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  • mybee333
    mybee333 Member Posts: 1,189
    edited December 2011

    Thanks peaches.  That's a help. Glad things are going ok for you sexually on the Arimidex.  Nice news for you Sandee re: the Arimidex.  I'm gong to have a serious talk with my onc. re: %''s . I do think my headaches were from the Arimidex.  Afraid to try taking it again. As far as recovering from surgery.....laid down all day. I am definitely laid up this time.  Just so fatiqued.  Hopefully will feel some energy soon.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2011

    Has anyone notice a lot of bloating and restless leg syndrome from Arimidex? My insomnia was bad enough without the leg stuff and now I look like a helium balloon! Sometimes I wonder if this is ever going to get any better!

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  • MamaV
    MamaV Member Posts: 907
    edited December 2011

    mybee - no sexual side effects here either!

    rohanna - I already had restless leg syndrome so can't compare with Arimidex - but the puffiness - fricken ridiculous!

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  • mybee333
    mybee333 Member Posts: 1,189
    edited December 2011

    Lots of edema/swelling in the extremities. Thanks MamaV.  Good for you!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2011

    MamaV, what do you do about your restless leg syndrome? I mentioned it to my onc and he just said it was part of it. ???

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  • pj12
    pj12 Member Posts: 25,402
    edited December 2011

    Rihanna,



    I found cutting out all caffiene helped the restless leg at bedtime problem a lot. Also, and this sounds weird, if I could lay so that my feet were against a wall or a headboard or a footboard it tricked my legs into not realizing I was lying down. :). My bed did not have a footboard so I lay with my head toward the bottom and feet pressing lightly against the headboard.



    The caffiene part is hard but the positioning is an easy possible help.

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  • cowgal
    cowgal Member Posts: 833
    edited December 2011

    Anyone figure out what to do about the swelling in the legs and feet from Arimidex?  I tried taking some water pills for a few days but it did not seem to help.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2012

    cowgal

    I am very careful about not using ANY salt.  I also check the "sodium" content of anything I eat that is "prepared."  that seems to be the best way for me.

    I still have "swollen" fingers - don't wear any rings anymore.  Tho they don't look swollen, obviously they have changed, as rings don't fit as they used to.

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  • Fearless_One
    Fearless_One Member Posts: 3,300
    edited December 2011

    Pleased to report I am back on the Arimidex with no side effects yet.    I need to start the Fosomax, too, but haven't started that yet.  

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  • mybee333
    mybee333 Member Posts: 1,189
    edited December 2011

    I just bought some new cheap rings. Of course with a wedding ring, that is a different story. Although I did know a couple that bought an inexpensive diamonique or something.  She had fun with it.

    I find with diuretics they tend to interfere with my sleep, speed me up a bit.  But I am fairly med. sensitive. I'd like to know what to do about the water retention too because it just makes you feel fat. I haven't salted my food for years.

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  • MamaV
    MamaV Member Posts: 907
    edited December 2011

    Rohanna my RLS is manageable if I exercise every day - even just a brisk walk helps. Days I don't exercise it's bad!

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  • Sandeeonherown
    Sandeeonherown Member Posts: 1,946
    edited December 2011

    Molly/cowgirl- the swelling is a big reason why I have just quit arimidex...swelling in my chest, back, arms and hands....too close to the heart for my liking so ...done....they put me on aleve or naproxen to try and take down the swelling but it has not helped ....bras feel tight, rings are off...including the thumb ring...and my face and arms are puffy...enough!...

    Have been told my my lymphodema massage therapist that beets help the body/liver remove toxins from the body...so despite my loathing for them, I bought some yesterday..going to put them in my coleslaw and see if they are palatable there!

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  • mybee333
    mybee333 Member Posts: 1,189
    edited December 2011

    I'm laughing because beets are the one food I cannnot stand. Loathe is a good word.

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  • Sandeeonherown
    Sandeeonherown Member Posts: 1,946
    edited December 2011

    My galpal (another survivor) was here last night with her daughter and we laughed too..and then she googled something about beets and recipes for people who hate them and bang..up came some recipes....they all sounded disgusting but I guess I will have to try some anyhow....maybe try a beet puff instead of turnip puff ( I also hate turnips but liked them!)

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  • informated1
    informated1 Member Posts: 15
    edited December 2011

    I was put on arimdex after surgery chemotherapy radiation it was unbearable pain meds couldn't take away the pain and joint pain i felt so my Mo and i agreed can't take them can't take them. I am cancer free 2011 dx 2004 partial masectomy 18 nodes removed and 75% tumor was made up of estrogen which was caused due ot my early menopause and me taking replacement hormones for eight years. One positive lymphnode I am not saying that anyone should not do what the doctor says but for me this drug made no different in my staying cancer free. 

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  • Sandeeonherown
    Sandeeonherown Member Posts: 1,946
    edited December 2011

    Thanks informated1.....and so glad to hear you are cancer free 7 years later....I know all people and all cancers are different....but I am sensitive to so many medications....if this were essential...if one of my BC team said to me ' sandee...you NEED to take this....it will make a difference'....ok...I would reconsider but what I am getting is "go off it" and " it is entirely up to you". and ' give it a try and see how it goes"...well...it is not going .....so decision made....i went through permimenopause early too..no replacment hormones though....no positive lymph nodes....under 1cm....I am choosing quality of life right now...I may change my mind down the road...and I may be here in this position again but right now, I need to choose exercise, good food for my heart, body and soul....and as few medications as possible...need to clean out this host of mine!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2011

    Just a suggestion about beets. The pickled ones are awesome!

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  • Sandeeonherown
    Sandeeonherown Member Posts: 1,946
    edited December 2011

    all righty then Rohanna...I will try them...in he meanime, I have shredded a full one into tomorrow' coleslaw...keep your fingers crossed:)

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  • Nancyb7912
    Nancyb7912 Member Posts: 84
    edited December 2011

    Hello all. I've just been hanging out reading the posts lately.  BC seems to be at bay, joint pain is off the charts (Arimidex or Aromasin - doesn't seem to matter) and the rest of me is still acting up- this week I said goodbye to my gall bladder.  When I saw the beet posts, I decided to chime in. Try them one of 2 ways - roasted in the oven and then tossed with a balsamic vinegarette - and add any other root veggies you like. Or - roasted and shredded. Place the shredded beets on a small layer of tender salad greens, top with sunflower seeds and goat cheese and a light vinegarette.

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  • Katarina
    Katarina Member Posts: 386
    edited December 2011

    Arimidex is a risk they say for causing Osteoperosis.  

    Forget that, it's already given me arthritis in just a short time. 

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  • MamaV
    MamaV Member Posts: 907
    edited December 2011

    Just for laughs, I thought I'd share.  When I was younger and made homemade chocolate cake with my mom, we used to put a can of beets in the cake batter.  You could not taste them and they made the cake so moist!  So, if all else fails ... eat cake!

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited December 2011

    I'll bet that did taste good. My mom would add zucchini to chocolate cake. Couldn't tell and the cake had a real moist taste.

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