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

For Arimidex (Anastrozole) users, new, past, and ongoing

17980828485607

Comments

  • Easydancer
    Easydancer Member Posts: 25

    Timbuktu,

    I will have to go back and read my research...some time ago...but the research definitely said joint pain=less chance of recurrence. I'll try to find it and send you the website. Again, it was a medical/scientific study...you do know that anastrazole completely stops the production of estrogen everywhere in the body...not only ovaries (which have already shut down with menopause) but also the adrenal glands which also produce estrogen after menopause...did you know that?

    I will get back to you.

  • lago
    lago Member Posts: 11,653

    If you are experiencing SE in general with this drug it means it is working. Granted if you don't experience SE doesn't mean it isn't but you don't really know. I think that's why the studies may show that those of us with SE have better chance of remaining NED.

  • sweetandspecial
    sweetandspecial Member Posts: 1,669

    Easydancer: I feel so blessed to have my particular DH right now.  He's been a rock throughout this whole journey thus far and as far as the romance department goes he still has a hard time keeping his hands off me after 30+ years of marriage and with boobs that feel like firm grapefruits right now (only until Wednesday, though!!).  Now, if only the Arimidex hadn't practically shut down MY libido we'd be all set......but, as I've said on at least one other thread, as long as Duracell and Energizer keep making batteries we'll do just fine WinkTongue Out.

  • [Deleted User]
    [Deleted User] Member Posts: 942

    I don't believe that the absence of SEs indicates that treatment isn't working.



    Many women who had no hot flashes during menopause also don't have them with arimidex. I'm one of them.................







    http://www.medicinenet.com/chemotherapy/page5.htm

  • Timbuktu
    Timbuktu Member Posts: 1,423

    I was told that anastrazole eliminates all but 2% of the estrogen.  That was from an onco at Columbia University.

    Boy, never knew how good estrogen was until now!

  • Timbuktu
    Timbuktu Member Posts: 1,423

    Hot flashes was not a problem when I went through menopause nor is it a problem now.

    When I first started taking Arrimidex, right after surgery and before chemo, i had no SE's.  It worried me.

    I asked my onco how we knew it was working?  He said they just assume so.  It would be nice to have a test that shows NO estrogen in the blood, wouldn't it?

  • Easydancer
    Easydancer Member Posts: 25

    Timbuktu,

    The study from 2007 regarding the SE's (esp. Joint & muscle pain) of Arimidex and BC recurrence is on Breastcancer.org. It is Titled "Hormonal Therapy Side Effects Linked to Lower Risk of Recurrence". I have read it once, in March or April, but they say it has been updated since then so I will go read it again. There are other studies also, but I will have to revisit them and report back.

    Hope that helps.

  • lago
    lago Member Posts: 11,653

    Soteria205 Having SE is an indication the drug is doing what is supposed to do. Not having SE does not mean though that it isn't doing what it's supposed to do… It just appears that those with SE do have better results. Still people with SE get mets and people without SE don't. It's not a black or white situation. Just a higher percentage

    My SE are very minimal now. I'm not worried that it isn't working.

  • bren58
    bren58 Member Posts: 688

    Is there any way of knowing if it is actually working or not?

  • Timbuktu
    Timbuktu Member Posts: 1,423

    Thanks easy.  It was really nice of you to find that.  I think I must have read it too.  It's so hard to remember where you read/hear things.  Whereve the news is from I hope it's true!  I have plenty of pain and will try to appreciate it from now on!

  • lago
    lago Member Posts: 11,653

    Bren when  I asked my onc after she went over my entire treatment place (after bmx) I specifically asked her "how do we know this will work?" She said "We don't know for sure. In your case there is a 40% chance that you don't need any additional treatment other than surgery. We don't like to over treat… If there was some way of knowing who those 40% were we wouldn't be giving them all this extra treatment."

    Translation: If you don't get mets it means it worked or you never needed treatment in the first place.

  • spookiesmom
    spookiesmom Member Posts: 8,178

    About 10-15 years ago I realized I should have gone through meno. Never had a hot flash or a clue. Asked PCP, she ordered a blood test. Came back that I had passed into post meno.



    So why can't that be done now? I assume it measured the amount of estrogen.



    Am sure having hot flashes now!

  • bren58
    bren58 Member Posts: 688

    lago, I figured that was the case. I think a lot of us get over treated because they just don't know who needs what yet. Even if they don't cure cancer, it sure would be nice if they could figure out how to customize the tx for each individual instead of everyone getting the "one size fits most" plan.

  • proudtospin
    proudtospin Member Posts: 4,671

    I went to a fund raising dinner where Susan Love was the guest speaker

    someone asked her about DCIS and treatment

    her response was that no one knows which folks with DCIS will have it morph into something worse or more invasive...so we may overtreat some

    me, put me in the full treatment box and hoping no reoccurances

  • Timbuktu
    Timbuktu Member Posts: 1,423

    As my onc at Sloan said, "Chemo reduces the odds of recurrence by maybe 3% but if you are one of the 3% that's a lot!"  She was the only one of the 6 oncos  I saw who wanted to give me chemo.  As it turns out I'm not doing well with the Arrimidex.  She said "you may be one of those who can't tolerate it.  At least you had chemo."  Life is full of surprises!  Best to throw the book at those nasty little cells, I think.

  • Easydancer
    Easydancer Member Posts: 25

    There is a blood test that my oncologist orders to look for a BC marker, protein CA 27-29 that Breast Cancer diffuses into the blood...that is one way they he can tell how my recovery is going. You might ask about it. Every time I go to see him, he has my blood tested for that. Had it done before surgery, at my last appoinment at the end of treatment, 1 mo. later,  and I am scheduled for it again when I see him 3 mos. later Aug. 27. I don't know how "fool-proof" it is, but I know that they use it a lot.  Look it up on some of the BC sites and it will tell you about it.

  • julie0957
    julie0957 Member Posts: 4

    SO good to hear from all of you, and that it actually may not be as bad as I originally was thinking.  The thinning hair part is disturbing, because, just having completed 4 chemo treatments, I don't have any to thin right now!  Just hope it doesn't keep it from growing back in as quickly.  :)

    I'm seeing that several of you suggest taking Claritin with the Arimidex - have not heard that before!  I will do that, for sure.  I wonder why it helps - I'll ask my oncologist, but won't see him until first week in September. :)

    You all are so helpful, and I'm grateful for everyone here.  Take care!!!!!!

  • julie0957
    julie0957 Member Posts: 4

    SO good to hear from all of you, and that it actually may not be as bad as I originally was thinking.  The thinning hair part is disturbing, because, just having completed 4 chemo treatments, I don't have any to thin right now!  Just hope it doesn't keep it from growing back in as quickly.  :)

    I'm seeing that several of you suggest taking Claritin with the Arimidex - have not heard that before!  I will do that, for sure.  I wonder why it helps - I'll ask my oncologist, but won't see him until first week in September. :)

    You all are so helpful, and I'm grateful for everyone here.  Take care!!!!!!

  • julie0957
    julie0957 Member Posts: 4

    Schoolmom: thanks for the reassurance. :)  So glad you are not having major issues!

  • Timbuktu
    Timbuktu Member Posts: 1,423

    The took the test for tumor markers at Sloan.  They said I was clear thank God.  But my onco here says it is a meaningless test and doesn't take it!Undecided

  • ruthbru
    ruthbru Member Posts: 47,698

    The tumor marker test isn't fool proof, but a sudden jump in the numbers can indicate problems. Whether it is false reassurence or not, I am always glad to see that number staying stable.

  • Easydancer
    Easydancer Member Posts: 25

    Ref: CA 27-29...is only for tracking metastesis or recurrence/recovery, not for screening, has to be used cautiously. Don't want to go demanding that our doctors do it! Is a tool that some Doctors like to use, probably others don't. Wink Fairly comprehensive article is at:

    http://www.answers.com/topic/tumor-marker

    talks about all the different tumor markers...is pretty good reference information to know.

    Patti

  • julee_stayin_strong
    julee_stayin_strong Member Posts: 19

    I have been taking Exemestane which i guess is the generic for Arimidex for about 4 months now. My hip is killing me sooo bad. I had an MRI and my bones look fine. So I ask, WHAT IS GOING ON??? Do you think it is arthritis??? I am 43 and feel like an old lady!!! I really would like to stop taking this pill if this is what it is going to do to me. I just had a hysterectomy 2 wks ago and now i feel depressed. Do you think that is normal??? I was fine before, i don't know if it is the surgery or just the complete boredum. HELP...ANY SUGGESTIONS??? I've been in menopause for over 2 years already.

  • proudtospin
    proudtospin Member Posts: 4,671

    Juli...try adding yoga and stretching to your exercise.  There are a lot of great exercises (you can goggle hip stretches) and it will help you get past the dang pain.

    The pill is important to your recovery and don't let the dang thing get you!

    If I could show you my stretches I would !

  • proudtospin
    proudtospin Member Posts: 4,671

    and if you are not exercising, now is the time to start!  YMCAs have a program called Livestrong which will give you 12 weeks free membership!

  • carpe_diem
    carpe_diem Member Posts: 599

    Julee,

    If you check on Home → Treatment & Side Effects → Hormonal Therapy → Aromatase Inhibitors you'll see a list of AIs (aromatose inhibitors) showing that exemestane is the generic form of aromasin while anastrozole is the generic for arimidex.  They both act in a similar fashion, as does femara (letrozole), but some people have different side effects so it may be worth switching between them for that reason.

  • kjiberty
    kjiberty Member Posts: 687

    Julie1957:  I have been on arimidex for 13 months and my hair is as thick as could be.  Hair thinning does not occur in everyone.  Don't give up on your thick head of hair!  

  • Easydancer
    Easydancer Member Posts: 25

    Question: I have been on Anastrozole since May 9, what is that 3 mos.? I have an interesting SE that I haven't heard anyone mention: cold/chills. Especially in the  morning when I get up and in the evening around dinner time. It is so bad that I have to wrap up in a blanket or put on a jacket and sometimes lightweight sweatpants until it passes.

    Does anyone else have this issue? My hot flashes have pretty much passed, (went off HRT Dec. 24, 2012, day I was diagnosed with BC) but now I have this issue with chills and being cold. I'd sure like to hear from others.  I did not have this problem before the Anastrozole that I can recall, and I haven't read of it as a SE in any of the literature.

    Easydancer.

  • ndgirl
    ndgirl Member Posts: 950

    Easydancer, yes I have had those chills at times too, and they are worse than hot flashes to me because they last longer, at least for me. I dont necessarily get them at any specific time but boy I just freeze! Looks like you and I started on this med about the same time. Am hoping it does the job!!

  • Easydancer
    Easydancer Member Posts: 25

    Question: I have been on Anastrozole since May 9, what is that 3 mos.? I have an interesting SE that I haven't heard anyone mention: cold/chills. Especially in the  morning when I get up and in the evening around dinner time. It is so bad that I have to wrap up in a blanket or put on a jacket and sometimes lightweight sweatpants until it passes.

    Does anyone else have this issue? My hot flashes have pretty much passed, but now I have this issue with chills and being cold. I'd sure like to hear from others.  I did not have this problem before the Anastrozole that I can recall.

    Easydancer.