Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.

Arimidex - Coping with the SE's

15657596162281

Comments

  • don23
    don23 Member Posts: 213

    I just got back from my onco's office. I have been having alot of joint pain which I think is from Arimidex. I don't have a lot of pain during the day when I am moving around but at night when I'm sleeping is another story. The pain actually wakes me up! Right before taking Arimidex I had a total hysterectomy so I'm not sure if these pains would be around anyway without the Arimidex. He told me I could go off of it for a month to see if it's just arthritis or side effects from Arimidex.

    Has anyone taken a break from Arimidex for a month? I am a little nervous but he told me if I should get a recurrance in that time frame it was going to happen anyway. I do plan on going back on Arimidex but just need to see what is what for now.

  • ananda8
    ananda8 Member Posts: 1,418

    ruthbru,

    You guys have been through a lot this winter.  I hope you have a very cool spring so the flooding isn't too bad.  In my area, we are worried about our semi-drought that has been going on for 8 months. 

  • wenweb
    wenweb Member Posts: 471

    don23

    I have seen posts from many who have gone off the A for a month. I went off of it myself for a month due to depression, but found that I didn't feel any differently.  Aches and pains may be different.  The original onc I went to wouldn't hear of stopping the A or even switching to Tamoxifen.  It was finally my PCP who told me to stop it.  I have a new onc now :>)

  • PinPDX
    PinPDX Member Posts: 3

    Bombaygal,

    I was also just starting menopause and so I opted to take Tamoxifen first.  I don't believe you can take the AI if you are still ovulating, which apparently I was.  After 2.5 years we checked my hormones and found that I was menopausal.  Once menopausal, I think it makes more sense to take the AI, since the studies favor it a little more for preventing a recurrence in postmenopausal women.  Like others, I have bad aches in my ankles and feet which were there on the Tamoxifen but not as severe.  I know someone in the same situation who stopped the AI and went back to Tamoxifen to finish out the 5 years so that is an option I am considering.   

  • carolehalston
    carolehalston Member Posts: 8,210

    I got so behind in reading this thread that catching up involved too much reading!  So I skipped to the end.  I've been taking the little white pill for about a year and a half.  It worries me a little that the SEs are so tolerable.  The most annoying SE is the warm flushes.  I do have creaky joints until I start walking and moving but I'm old enough (67) for that to be aging.  I'm having weight control issues but since BC, I tend to indulge myself too much with food choices.  My cholesterol had jumped when I had bloodwork last year.  I'm waiting to see if it's still high this year. 

    It will be two years in June that I quit HRT and I still miss it!  I think it's cruel that HRT isn't healthy for post-menopausal women because it truly is the Fountain of Delayed Aging if not the Fountain of Youth! 

  • pj12
    pj12 Member Posts: 18,108

    HI Carole,

    I hadn't read you in a while and glad to see you posting here. Congratulations on hanging in there with Arimidex. Hope everything else is going well too.

    Pam  

  • carolehalston
    carolehalston Member Posts: 8,210

    Thanks, Pam, for the well wishes!  I am doing well except for carrying around an extra 10 lbs.  I'm wearing my "fat" clothes these days.  Hope everything is good with you. 

  • Rocket
    Rocket Member Posts: 910

    Hi Ladies, I just got back from a cruise to the Western Caribbean and it was fabulous!  The warm, humid air seemed to ease my joint pain, or maybe it was all the food!  I gained 4 lbs. but I ate everything I wanted.  They even had a chocaholic buffet one night and I indulged entirely too much.  Now it's back to reality and eating very healthy again.  I'll take off those four pounds quickly.

    I was concerned that I'd get stopped at the airport wearing my prosthetic foobs, but as soon as I got to the scanner, I told the TSA agent that I was wearing them and had swim forms in my carryon.  I wasn't even searched.  My 65 yr. old sister was, and on the return flight, my 86 yr. old mom was patted down quite thoroughly.  Both flights I wasn't even touched.  I think the sensitivity of the issue and recent events surrounding it have made a difference.

     As to the joint issues, I've been on Arimidex for 10 mths. and have all the side effects mentioned.  It has gotten some better, but I'm still strugging with the carpal tunnel, trigger finger, back, hip and knee pain.  It is not as severe as when I first began taking it however so I believe there is hope. 

    It's good to be back, but I want to go on another cruise this year with my DH this time.  I'll just have to eat more wisely.  :-)

  • Medigal
    Medigal Member Posts: 183

    I was just researching "estrogen" and how it helps post-menopausal women.  I found out that estrogen is important for good heart health!  I had no idea it had anything to do with protecting my heart!  Now I know why it is a side effect of Arimidex.  Does anyone know of the name of any test that can be done to find out what my estrogen level is after 7 years on Arimidex?  My onc is ignoring the possibility of heart problems so I need to find out where I stand before continuing on Arimidex.  If we stop Arimidex does our estrogen return or is it gone forever?  I have no idea what is happening inside my body while I swallow my little white pill each day.  Thanks for any advice.

  • wenweb
    wenweb Member Posts: 471
    Medigal I have those questions myself.  
  • nativemainer
    nativemainer Member Posts: 7,922

    Medigal, wenweb, after menopause, our ovaries don't make estrogen anymore.  What estrogen we get after the ovaries shut down comes from our fat. An enzyme called aromatase converts fat into estrogen.  The Aromatase Inhibitors block the action of the aromatase enzyme, so no estrogen to feed any estrogen fueled (ER+) breast cancer cells. 

    Medical science doesn't know yet how estrogen protects women's hearts.

    There is a test that measures estrogen.  Ask for an estradiol level.  

  • wenweb
    wenweb Member Posts: 471

    NativeMainer I was told by my onc that the estradiol level test was not a reliable way of knowing what someone's estrogen level is.  Do you know anything about that?  

    Thanks 

  • wenweb
    wenweb Member Posts: 471

    Thanks SherriG.

  • carolehalston
    carolehalston Member Posts: 8,210

    Rocket, I developed carpal tunnel symptoms after my BMX before I even started taking Arimidex.  I went online and printed out hand exercises.  Also ordered a set of rubber balls with instructions for exercises.  I did the exercises for a couple of weeks and the symptoms went away.  Worth a try. 

    On the subject of estrogen and heart health, that was a big selling point for HRT when I began taking it about 18 years ago.  Data from the Nurses Study cast strong doubt on that benefit.  I have my doubts about the Nurses Study because most of the women didn't start HRT at the beginning of menopause as I did. 

    Happy Monday to all.

  • don23
    don23 Member Posts: 213

    Carole - where do you order those rubber balls from? Do you still do the exercises that came with them? I have carpal tunnel and am looking for ways to improve it without surgery. I also had it before my BMX and before Arimidex but now it seems to be a little worse.

  • heavenschild
    heavenschild Member Posts: 42

    I was just prescribed Armidex, and frankly I am scared to take it.  Going to start rads also....  Just need to jump off the cliff and start taking it, but I am already nauseatingly tired at times.  Lord, help!

  • Pegk
    Pegk Member Posts: 3

    Checking in...

    I took my last little white pill this week after taking it for more than 5 years. I was on Arimidex until my insurance company switched to the generic Anastrozole about a year ago.

    I guess I'm one of the lucky ones, because I didn't have any of the terrible side effects that many of you have had. I was a little sluggish and stiff after being in one place for a long time (like first thing in the morning or after a long car ride). Just getting up and moving helped.

    My biggest problem was accelerated bone loss. I was rapidly heading from osteopenia to osteoperosis, even taking Actonel weekly. I've had 2 treatments of the once a year infusion of Reclast and my bone density has improved. My oncologist said it should continue to improve now that I'm no longer taking the AI.

    So now after almost 6 years I'm on my own: surgery: done, chemo:done, radiation:done, hormonal therapy:done 

    Wishing all of you minimal side effects and good health! 

  • nativemainer
    nativemainer Member Posts: 7,922

    According to my refernce book MOsby's Diagnositic and Laboratory Test Reference 7th ed. (Pagana and Pagana, 2005):

    E2, estradiol, is the most potent estrogen fraction, produced primarily in the ovary.  Post menopausal adult female blood levels are less than or equal to 20 mg/mL.  

    E1, estrone, is the major circulating estrogen factor after menopause.  It is primarily produced in the peripheral tissues.  Estrone is more potent than estriol, but less potent than estradiol.  Estrone is not measured directly but by subtracting the E2 and E3 amounts from the total Estrogen result.  

    E3, estriol, is the major estrogen fraction present in pregnancy and  is used to monitor the health of the baby and placenta. (page 414-415, paraphrased).

    So your onc is technically correct, the estradiol level by itself isn't helpful.  But a total estrogen with fractionation (where they measure the total estrogen, estradiol and estriol) would give a good idea of how much circulating estrone is present, and that can be used to monitor the effectiveness of the AIs.  Unfortunately, the best way to use this would be to have had the estrone level calculation done before starting Arimidex in order to have a number to compare to after taking it for a while.  

  • don23
    don23 Member Posts: 213

    Pegk - Congratulations on being finished! What a feeling that must be!

  • Medigal
    Medigal Member Posts: 183

    PegK- How great it is that you got to get off the Arimidex!  I already had osteopena in my hip but my Onc still insisted I keep on taking the Arimidex since the bone density tests did not get worse.  This is over 7 years for me and frankly I am tired of the little white pill!  Please let us know how you make out once you are "on your own" without our little "helpmate".  Thanks!

  • Valgirl
    Valgirl Member Posts: 28

    katetarbill - Not everyone has terrible side effects on Arimidex.  I started Jan 1 and so far have been fine.   Finished Rads Dec. 22 and other than some tiredness toward the end and my one radiated breast getting a tan (it's fading now) that went well too.    Good luck!

  • wenweb
    wenweb Member Posts: 471

    PegK Congrats and enjoy your new status!!

    katetarbill  It is like jumping off a cliff, ya just gotta do it.  Hopefully you will be one of the lucky ones and have no or minimal side effects.  Good-luck!!

  • heavenschild
    heavenschild Member Posts: 42

    wenweb and Valgirl:  Thanks for the encouragement!  Valgirl - have exactly the same diagnosis as you!  Will start tomorrow...

  • claire_in_seattle
    claire_in_seattle Member Posts: 2,793

    Katatarbill.....  Second what Wenweb says.  I have also had minimal side effects from anastrazole.  You just have to screw up the courage and do it.

    A bit like that chairlift yesterday where the unloading was like dropping off a cliff.  I was on x-country skis and at least was a soft landing with all that snow.  I scurried out of the way.

    If it's any consolation, what hurts today are my sprung glutes.....   Good luck!

  • DMD
    DMD Member Posts: 30

    Congratulations PegK on being finished! Smile  I just started 4 weeks ago and so far like you, I am only experiencing that extreme stiffness when I first get up in the morning and after sitting still for any length of time.  I hope that will be the extent of my SE's...its always good to hear from those who tolerated it well...it gives the rest of us hope!!!

    Thanks for posting,

    Dawn 

  • ruthbru
    ruthbru Member Posts: 47,693

    Don't be afraid of it. It is the ER positive ladies biggest gun in prevent recurrence. I've been on it for 3 1/2 years and am doing great. I had some hot flashes and creakiness in the beginning, but if you keep moving and give your body some time to adjust, most people do fine.

  • mersmom
    mersmom Member Posts: 79

    ruthbru,

    Did you read the post from Rocket? The cruise she went on had a chocolate buffet. Made me think of you...and yes the rest of us. Sounds a little like paradise. The mention of humidity maybe making her feel better makes me wonder maybe a steam bath or sauna would help.

    hugs to all

    Teri

  • weety
    weety Member Posts: 378

    nativemainer,

    Thanks for the excellent info!

  • ruthbru
    ruthbru Member Posts: 47,693

    careful about the steam baths & saunas, can increase the risk of LE Cry

    I'll stick with the chocolate buffet!!!

  • Enjoyful
    Enjoyful Member Posts: 278

    Good morning, A-Teamers!

    Does anyone know of any herbal and/or other dietary supplements that inhibit or otherwise affect anastrazole's functions?  I'd like to take something called "Nu-Hair," and it includes black cohosh and other herbs as well as large (though not what I'd term "mega") doses of vitamin A.  My doctor suggested contacting Astra Zeneca, but they couldn't help me with this question.  I thought that some of you intrepid researchers might have come across something.  Anyone?

    E