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Life on aromasin

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  • camillegal
    camillegal Member Posts: 15,711
    edited June 2012
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    Donna----hahahahaha me too.

  • dogsandjogs
    dogsandjogs Member Posts: 677
    edited June 2012
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    Well.since I'm my seventies it is tempting to blame my aches and pains on old age. But---aches and pains come on gradually and the Aromasin pains came on suddenly - after 2 months I was suddenly walking like I was 90, couldn't even jog, awful pain in my toes and fingers. Fingers seizing up so I couldn't straighten them,  terrible shoulder pain which kept me awake at night, more stress incontinence, more episodes of Afibs, etc etc.  The depression was also awful, I don't even want to mention how horrible my thougts were - all day long.

    Now the shoulder, finger and toe pains are gone and the others are much less. The depression has lifted, the Afibs have stabilized. My cardiologist's NP said I did the right thing by stopping the drug.

  • camillegal
    camillegal Member Posts: 15,711
    edited June 2012
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    Dogs andjogs---I'm in my late 60's so I know exactly what u mean all of a sudden it happened--altho thankfully  I never had depression, but lots of pain and before all this started I worked full time alot on my feet very busy place and I figured I'd go back to work after --jokes on me- never could go back and my body aged tremendously fast. LOL

  • mybee333
    mybee333 Member Posts: 672
    edited June 2012
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    The depression, when I have it, which is most mornings, is awful.  I can feel it as something separate from myself.  Like a big knot of self-pity and anger in my chest.  It almost feels like it is not a part of me. I'm so irritable, and sometimes, just plain mean.  Sometimes by evening, i am lately starting to heal and experience feelings of joy.  The mood swings are unreal. I know for me, the sleeplessness really conrtibutes to the depression and negative obsessional thinking. Cami - headachey and tired are given in the am, and then it subsides, once I get moving. 

    However.....I stick with this drug because I know I need an AI.  I am only 54 and my cancer was highly estrogen positive. Good and bad.  I am not too achey if I keep moving, which is a blessing.  Gardening has turned into the greatest blessing.

  • camillegal
    camillegal Member Posts: 15,711
    edited June 2012
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    Mybee I'm glad u did fine gardening helpfl--I wish I had something I really liked--I am learning the computer a little so that's something never had one before----I think too alot is from not sleeping well, I don't know I do get sad but not depression ---dow or will we ever have any answers for all this mess. I know how I feel and it's certainly not good, but how do we explain it to others, so mybee don't u always say Fine when asked. I want to scream don't ask leave me alone--but I don't. I think u'r still at an age of estrogen stuff going on so that could contribute to this I don't know. And again me too my Dr. did ask me if I wanted to change and I said isn;t that why u put me on this cuz it's the best for me--Yes--so I'll stick as long as I can too.

  • donnajrn
    donnajrn Member Posts: 31
    edited June 2012
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    Well ladies, looks like a lot of us are in the same boat, I am in my mid 60's..or shall I say the first of the boomers!  Off aromasin now for 2 weeks, and yes, still have some stiffness...but nothing like before....I was thinking is this medicine worth it??  Glad my MO said going back to tamoxifen was just fine.  Think the biggest problem was the shoulder pain..........amazing how a little pain in the shoulder prevents sleeping well, cannot turn without pain, unable to get out of bed............what a bummer that was.

    Donna

  • camillegal
    camillegal Member Posts: 15,711
    edited June 2012
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    Donna, what is this shoulder thing I have it too--it stiffins and hurts alot I can't reach with it and it's on the oppoite side of where all the cancer was and a few of us have it  I thought it was just me (again).

  • dogsandjogs
    dogsandjogs Member Posts: 677
    edited June 2012
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    My shoulder pain was on the same side as the lumpectomy.  It would radiate from the shoulder down the arm and keep me awake. I don't do well on strong pain killers so took Tylenol which really didn't help much. For some reason it hurt mostly at night.

  • mybee333
    mybee333 Member Posts: 672
    edited June 2012
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    Radiating pain is a problem. A big problem .  Good luck.

    I don't always say fine. Sometimes i say okay. Sometimes more.  Doesn't always go as well but I try to be honest.  Wondering if that is socially appropriate...........it is working for me.

  • camillegal
    camillegal Member Posts: 15,711
    edited June 2012
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    OK I took my night pills and see what happens, if I wake up I'll check out this post LOL

  • camillegal
    camillegal Member Posts: 15,711
    edited June 2012
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    me too Kayb---but I'll check anyway if I'm awake GRRRRRRR

  • camillegal
    camillegal Member Posts: 15,711
    edited June 2012
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    I checked I'm glad u guys got to sleep--I was in the chat room til 2AM woke upat 3---fell back to sleep now it 5am--I'm awake for now --no doubt will be napping on and off all day --Dang---We're dog sitting for all of next week starting last night--beautiful Lab so friendly, but I have a cat who's so afraid--my dgtr promised before we moved in together so my grandson had a bad dream came in here my cat's all scared so really that's how my niht was. Now this morning I'm crabby so I thought of u 2 hahaha. I'm not insulting u I just know u know how I feelI told u I got out of the hospital Monday nite--I was there almost a week (not any cancer stuff) well in a way SE stuff that left me depleated of electrolytes so I'm still wobbly but much betterso I'm double crabby I feel weak still and I need to take a shower today and my dgtr has to stand guard on me. I'm older but my body  so much older the last few years I'm really venting this morning GRRRR is right. And so my day starts.

  • ginger_mea
    ginger_mea Member Posts: 135
    edited June 2012
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    I take it first thing in the a.m. and it doesn't make me lethargic or sleepy.

    Happy Friday!!!

    Ginger

  • donnajrn
    donnajrn Member Posts: 31
    edited June 2012
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    I know several people who are on AI's and all have different responses.......very interesting.....I wasn't happy with tamoxifen but that is so much better than aromasin for me.  I have a friend on femara..no problem, a friend on Arimidex, no problem.........another friend tried arimidex, and the pain was intolerable..and she stopped it with the approval of her docs.  This is what is so great about this web site..........1. you find you are not alone, 2. you meet such wonderful sisters here, 3.sometimes you find a method to deal with the issues you have.  4. no better support system anywhere.

    Donna

  • kira1234
    kira1234 Member Posts: 754
    edited June 2012
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    Donna I agree with you the best support here. My Dr's only concern is I keep taking something. He had suggested I go off Femara for quite a while, but I just kept thinking at least I know what to expect for it. Unfortunately getting eczema all over my body kind of took the decision out of my hands. So far the Aromasin has been kind, but then I'm only 2 weeks into it so will see wha the future is.

  • ptdreamers
    ptdreamers Member Posts: 639
    edited June 2012
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    camillelegal, i take it right after dinner which is generally five or six hours before bed. So far that is working well for me. I also take melatonin 3 mg about an hour before bed. I awaken two or three times to us the bathroom but am able to get back to sleep. Seems like we just have to work out what works best.

  • camillegal
    camillegal Member Posts: 15,711
    edited June 2012
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    KayB I so glad u got a good nights sleep--yes I am wobbly but haven't fallen down (I couldn't resist, sorry)

    Ptdreamer I keep on forgetting to try it later it's in with my morning meds--I have to get it changed.

    I did take a shower today first time since the hospital but my dgtr stayed in the bathroom and helped some--so I felt easier with it. and I am so tired and slept, I try not to so I sleep better at night, but I can't keep my eyes open. Oh well Tomorrow I start my Aro. later in the day

  • camillegal
    camillegal Member Posts: 15,711
    edited June 2012
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    OK took my mornign pills and put my Arom. in the afternoon bunch--so let's see.

  • fondak
    fondak Member Posts: 271
    edited June 2012
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    I am wondering, have any of you improved after 6 weeks of taking aromasin? 

    My dr told me to give it 6 weeks because a lot of women feel much better after that. 

    I took it 3 wks and then was off 2 for surgery.  The 2nd week off, I felt great and after only a few days back on it the pain, fatigue and insomnia were back and have worsened.  I've been back on it for 3 weeks now.

    Thanks

  • rgiuff
    rgiuff Member Posts: 339
    edited June 2012
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    I've been on aromasin about 3 weeks now after finishing up tamoxifen in February and then taking over 3 months break from meds.  My sleep has been a problem for the past few years, going throught the menopausal transition.  Now it's a little worse.  The 1st week with this med, I had trouble falling asleep at all.  Now I can fall asleep, but I'm waking up wide awake after 2-4 hours and then have to take half an ambien just to get back to sleep for a few more hours.  I also drink an herbal tea that I got from Trader Joes called Well Rested.  I'm going to try just the tea tonight if I wake up too early to see how effective it is by itself.  I'm off tomorrow from work, so lack of sleep won't be such a problem.  My Onc's NP says I'm being kinder to myself if I just take the ambien or restoril regularly, but I don't think they are as effective that way, and like to use them for emergencies, so that they will work when I really need them to. I've tried the ambien extended release and that was horrible.  It worked the 1st few times, and I took it for a few nights, then the night I didn't take it, I was awake the entire night.  I never refilled that Rx.

    Mybee, I can so relate to what you are going through.  I hate that early morning awakening so much, especially when it's too late to take anything because I have to get up for work in an hour or 2.  That is the time when I tend to lay there ruminating over things, even good events that happened and thinking negative thoughts about them.  Evening has always been my favorite time of the day.  Then I can have a beer or wine, which always gives me a nice buzz, and I just feel more hopeful in the evening.

    The first week of aromasin, I had terrible aching feet, which was affecting how much walking I could do, and some pains shooting down my wrists, but now I just feel occasional mild aches in my wrists and hot flashes are more intense now, but only at certain times of the day, usually during sleep hours, especially early morning.  I'm also feeling a drier vaginal area, but have vaginal estrogen products that I use occasionally and they take care of it.

    Kayb, you mentioned vanity, but don't feel bad about it.  I'm right there with you, probably even worse than you.  I lost about 8 pounds in the months since stopping tamoxifen, without really even trying.  With that same exercise and eating routine, I had difficulty the past year with extra lbs. piling on.  Now on aromasin, we'll see what happens.  And as far as being vain goes, I've decided that if I start having thinning hair around my face, or signs of more rapidly aging skin, I will probably stop the medication, especially if aches get worse and affect my activity.  With my diagnosis of Stage 1, I truly feel that I've done and am doing enough already, even without taking medication.

  • rayofsun
    rayofsun Member Posts: 18
    edited June 2012
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    Hi everyone catching up on posts, very informative. I too have shoulder pain on one side. I did have an auto accident where I got rearended and pain went away for a bit in neck and shoulder and returned after starting aromasin begining of march. Are peoples shoulder pain one sided?

    Now the last week or so I am getting severe hamstring pain and I even have trouble changing positions on bed at night. Very frustrating. I am thinking of calling my onco to go back to tamoxifen. I really had minimal troubles on it. Are many people on tamoxifen post menopausal after trying different AIs , I don't want to flip between many AIs.



    Rayofsun

  • camillegal
    camillegal Member Posts: 15,711
    edited June 2012
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    Day one of taking my med later in the day--no nap today but tired like mad.  I'r ready to fall asleep now, I'm afraid i's to early and I'll wake up in a few hrs. OH such decisions.

  • donnajrn
    donnajrn Member Posts: 31
    edited June 2012
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    Rayofsun, I, too, had horrible shoulder pain on the right side.  Made it extremely difficult to even turn at night...........or even get out of bed.  Really did not bother me much during the day....I also had bone and leg aches when I went to bed.  Walking after sitting for an extended period of time was also quite uncomfortable until I got the "kinks" out........for these reasons I met with my MO and she agreed I could stop the aromasin and go back to tamoxifen..........I have been so much happier........I also had noted that my blood pressure had been quite high for me while on aromasin......and now down to normal.............my MO assured me nothing would happen by switching back.........Good luck

    Donna

  • camillegal
    camillegal Member Posts: 15,711
    edited June 2012
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    Well I took it later in the da--I did sleep petty good but that was one night--we'll see. LOL

  • dogsandjogs
    dogsandjogs Member Posts: 677
    edited June 2012
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    I get up several times a night to urinate. This was happening before the cancer diagnosis, but after taking Aromasin the urge got worse. This is not listed as an SE, but may be - who knows?

    I try to limit tea drinking about 6 p.m. which helps somewhat--

  • camillegal
    camillegal Member Posts: 15,711
    edited June 2012
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    Hmmm I wonder now--when I have to go now it's urgentnot like before---maybe it does have something to do with it --Oh again who knows.
  • kira1234
    kira1234 Member Posts: 754
    edited June 2012
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    Oh my how I so relate to the bathroom thing. I have really noticed this, and never realised it might be a SE. Another thing I notice is I get way more cramps in my legs. Someone on another thread told me to drink Tonic water, and it had been a life saver for me. I was off all the drugs for a couple of months and had forgotten all about this SE, and woke up last night with one really bad leg cramp. I will be taking my daily drink from now on.

  • ptdreamers
    ptdreamers Member Posts: 639
    edited June 2012
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    I think the bathroom thing is the lack of estrogen. I was and am getting up every two hours like clockwork. This has been going on for years long before I started aromasin.

  • mybee333
    mybee333 Member Posts: 672
    edited June 2012
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    Funny you mention the freq. urination....I feel like I have to go every 2 hrs. or so.  Makes long car rides, yard work, shopping trips, fun.  Yrs. ago I used to have interstitial cystitis; it can give you a chronic sense that you have to 'go'.  It went way following pregnancy and I just thought maybe it was coming back.  Not sure what is going on.  It is a recent problem.  Past two months or so, about as long as I have been taking Aromasin daily.

  • dogsandjogs
    dogsandjogs Member Posts: 677
    edited June 2012
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    The worst thing, if I don't go immediately when I feel the urge it is too late (if you know what I mean) so I have to be really vigilant when out in public. --