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

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Comments

  • nancyjac
    nancyjac Member Posts: 59

     Hi julee,

     Acording to the NIH, liver damage from Tamoxifin is possible, but rare.

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1442108/?page=1

     hwhranch,

    According to my MO, the weight gain is due to depletion of estrogen (the purpose of Anastrazole) not the drug itself.

  • Linda1966
    Linda1966 Member Posts: 441

    Julie, I dont know if this will help, but I was your age when dx, but with a lower staging and due to blood clots during chemo, tamox was not on the cards for me. Chemo put me in chemopause and I was given a zoladex injection once a month and arimidex. I got to stop the zoladex when they believed I was post menopausal. They were right, the combination made menopause permanent for me.

  • Mini1
    Mini1 Member Posts: 1,309

    Jo-5 - I don't know why they wouldn't consider it. If you eat to little, your body pulls nitrients from your bones, muscles and organs because it thinks you're starving. Could be the same thing. Also, it messes with your hormones in general. There's an association with birth control and weight gain, why not AI's and Tamox?

  • Msbelle
    Msbelle Member Posts: 160

    You are on to something Jo-5. My ONC told me fat produces "super estrogen" and also stores estrogen. Told me to get my BMI as low as I could. I am trying so hard to loose this extra fluff!!

  • Seabrook
    Seabrook Member Posts: 1

    I have been on Arimidix since end of June 2012 and about once every two to three weeks I feel like I am pregnant. Breast tenderness, bloating, extreme fatigue and two day migraines. It's as if I am a hormonal overdrive. All very odd since I had a complete hysterectomy (overly removal) in 2007. I am 25 pounds over weight. Any thoughts or advice? Thank you.

  • ruthbru
    ruthbru Member Posts: 47,682

    That is very weird that it is up and down like that....still adjusting maybe?

  • moonflwr912
    moonflwr912 Member Posts: 5,938

    I am only on this stuff for about a week. So far so good. Much love

  • nancyjac
    nancyjac Member Posts: 59

    So, I've been on anastrozole for almost 2 months now.  At this point, I really don't know how to tell the difference between side effects of anastrozole, side effects of having less estrogen, latent side effects of chemo, or stuff that isn't realated to any of that.  I guess in the end it doesn't really matter what is causing it until and unless it gets to the point where the side effect outweighs the benefit of whatever is causing it and I don't think I to that point, at least not yet.

    The thing I find weird is that just about all of my side effects happen only at night.  I can understand the general soreness and achiness because that seems to be directly related to lying down and lack of movement.  But the soreness is starting to wake me up during the night as well as frequent urination, but only at night.  That actually worked out ok because the movement from getting up and going to the bathroom relieved the achiness and then I could go right back to sleep.  But now I'm getting headaches, heartburn, and weird dreams.  It doesn't help that my husband has a bad case of bronchitiis right now and his hacking during the night wakes me up as well.

     I don't get the soreness, achiness, headaches, and heartburn at all during the day.  But it is getting to the point where I'm getting tired, sleepy, and cranky during the day just from the lack of quality sleep at night.  I've never had a problem sleeping my whole life and have always been a very heavy and solid sleeper.  Even with all of this going on during the night, I can still pretty much go back to sleep without much of a problem, but all of this stuff is waking me up so many times during the night that the quality as well of quantity of sleep is being affected.  I don't know at this point whether I should just start taking sleeping pills to try to sleep through all of the side effects or if I should try to address each side effect separately and find ways to eliminate or at least reduce the impact of them on my sleep.  I'm already brain fogged still from chemo brain, so I don't want to add any drugs that may affect mental funtioning.  Any suggestions?

  • Mini1
    Mini1 Member Posts: 1,309

    Nancyjac - I can just share my experience. Anastrozole was a disaster from the start. The Aromasin was cumulative. I did have radiation but no chemo. I knew the Anastrazole was the culprit there because within days of stopping it I began to feel better. The Aromasin took longer, but in the end I simply couldn't function with any QOL. I gave it two months before stopping and most of the side effects are gone with the exception of some lingering bone and joint pain.

    I don't mean to be a downer, but I believe in sharing the bad and good so people don't feel like they are the only one if they aren't having a good experience.

  • pat2011
    pat2011 Member Posts: 5

    I've been on Arimidex for 4 months.  The first 2 months were like going through menopause again...hot flashes and sleep problems.  Then those problems decreased and are almost gone.  Joint pain is present after sitting or sleeping a few hours, but some gentle stretching and exercise takes care of it.  The one thing that is driving me crazy is the growth of facial hair.  The hair on my head has finally re-grown to a couple of inches in length, but that growth was accompanied by facial hair...thick white growth.  This seems like a minor problem considering the benefits of the drug, but it is almost as bad as the loss of my hair a few months ago.  At least I could wear a wig and feel pretty.   I haven't heard anyone else talk about this.  Is there a solution?  I don't want to remove it by any method that would cause dark re-growth.

  • nancyjac
    nancyjac Member Posts: 59

    Thanks for the info Mini and Pat.  I'm hoping these problems will decrease. I did have a few hot flashes (and always during the night) but they weren't bad and just lasted a few minutes....just enough to wake me up but could go right back to sleep.  I have the same situation as you Pat re the joint pain.  It's fine after just a couple of minutes of stretching or walking.  It's not that I mind the side effects that I am having so much, it's that they are waking me up too much and so I'm tired and cranky doing the day and that's what is getting to me.

    Re the facial hair....I had that before chemo so for me it was the only benefit to losing all my hair with chemo.  It is coming back along with my head hair, but I haven't really notice that is is any worse since starting on Anastrozole.  There really isn't anything (other than chemo or laser treatment, and even those are temporary) that is going to prevent regrowth, so you might as well remove it by whatever means is most convenient and comfortable for you because it is going to regrow. 

  • phxsunshine
    phxsunshine Member Posts: 156

    Hello ladies, I'm joining your thread today.  Saw my Onc yesterday and came home with an Arimidex Rx.  I'm hoping I'll have a positive experience, like a friend of mine has had.  She's taken it for 9 mos with no problems. Tamoxifen, Femara and Aromasin have all had ugly SE's for me, so this is my last stand - so to speak - after a 6 week Rx vacation.  My Onc told me to give it a try, if it works - fine, if not, I get to pick which drug was the least crappy, because they are all crappy.  His words exactly and why I love him.  He's not comfortable with me being on nothing with my cancer, he said some folks can only take a pill every other day and maybe that will be me.  Not the optimum solution, but better than nothing at all.  I appreciate the time everyone has taken to relate their experiences so far.

  • gmafoley
    gmafoley Member Posts: 5,978
    phxsunshine - I am kinda in the same boat. Been on arimidex for a week..Tried all three of the AIs and back for a second try after a year off. Just realize, it is probably not the med - its the lack of estrogen that causes the SEs.. That is what my onc and many ladies on these boards have told me... The key to this is to keep on moving.. Don't be a couch potato... I have a full time job sitting in front of the computer... not a good thing for this process but it is the only way I can still have a roof over my head Tongue out.. Can we work this through together?
  • moonflwr912
    moonflwr912 Member Posts: 5,938

    I started tearing up over the tv! SE! LOL! Not to mention a weird dream. But, I went through the same during menopause, so not bad. Much love.

  • Linda1966
    Linda1966 Member Posts: 441

    Pat, is the facial hair mostly on the sides of your face? Thick but fine hair extending from mid cheek to the hairline? I and most of the ladies ive known who have had chemo had what we call fluff grow there in the first 6 months or so after chemo, and it gradually disappeared after that.  I figured it rubbed off on our pillows while we were sleeping.

    Be careful of hair removal methods if you decide to go that route, I personally found my skin was too easily burnt by the chemicals and it took 2 years before my skin returned to normal so that I could use wax or dilapitory cream on my upper lip without gaining what felt like 3rd degree burns.

     Its not fair, when youve lost all your hair to chemo, you should be able to have the head hair, eyebrows and eyelashes return and the rest stay away for good. What a nice bonus that would be lol.

  • ruthbru
    ruthbru Member Posts: 47,682

    I got one of those personal shavers. If it is 'post chemo' fuzz; it will quit growing like that after awhile.

  • kjiberty
    kjiberty Member Posts: 687

    Pat:  I have had to pluck my chin hairs 3 x's this week!  HOw annoying.  The hair on my head is growing like a weed.  Hooray!  HOt flashes 2-3 x's night.  Joints a little achey.  Other than that, so far so good after 5 weeks.  Keeping my fingers crossed....

  • phxsunshine
    phxsunshine Member Posts: 156
    GmaFoley, I'd be honored to work through this together!  I have no other health issues, I work out, do yoga and am working with a Naturopathic Oncologist to help mitigate the SE's, but one by one, they got too intense. They thought I had COPD from radiation, nope, it was the Tamoxifen.  I thought I was having a heart attack, nope it was the Femara.  The Aromasin made me feel batshit crazy, like my head had floated off my shoulders and my brain had floated away.  My husband and son were afraid to leave me alone, really weird.  6 weeks off and I felt like myself again, jumped at the chance and just got back from 2 awesome weeks in Poland.  My Onc told me to ease into taking it, so I'm going to do just that and hoping I have a winner in Arimidex.  I will share with everybody that my Naturopath has me taking Osteo-K to help with bone loss.  It is a natural alternative to Boniva, etc.  Cheapest when ordered directly from the manufacuter's website.  I had bad pain on Femara and she said that pain is your body dumping collagen and getting you ready for osteopenia and osteoporosis.  Nice.
  • fedfan
    fedfan Member Posts: 1

    I start taking Arimidex tomorrow. I'm still extremely stiff from chemo (Taxol), so I'm worried about how this will make me feel. I already have terrible hot flashes and night sweats, so who knows what they'll be like as I take the Arimidex. I just finished radiation last week. It would be great to have more time off, but I know that's not possible. Five years of Arimidex. Hopefully it will be easy. It will be nice to share the journey with all of you. 

  • gmafoley
    gmafoley Member Posts: 5,978

    fedfan - it is up to you when you need to start - a year ago I felt the same way and only had bad problems with the AI's - my MO took me off for a total of 9 months because he tried all three of them too close together... Now I am trying one more time... almost done with my first week and the SE I had a year ago isn't there....

  • kjiberty
    kjiberty Member Posts: 687

    Gmafoley & fedfan:  good luck with your AI's.  I hope you have minimal S/E's.  

  • anniebell
    anniebell Member Posts: 24

    Hi All...I'm new to this thread.  I have a question for anyone who migh have some info on this.  This morning, I had some scant vaginal bleeding and some mild cramping/low back pain.  Has any one else experienced this?  I called the MO on call at my clinic, who said that I need to have an edometrial biopsy and have my estrodial levels re-checked.  I have been post men. about 5 years and on arimidex for 5 months or so. I would love some insight to this.

  • kjiberty
    kjiberty Member Posts: 687

    Annie:  No I have not experienced this, but am anxious to hear what's going on.

  • gmafoley
    gmafoley Member Posts: 5,978

    Does anyone get anxiety attacks?? I keep getting chest pains - mainly in the sternum and shoulder blade when this happens... Its not the heart - is what I have been told in the past... I haven't had one in years, now they are back with a vengence...

  • Mini1
    Mini1 Member Posts: 1,309

    I no longer take it, but when I did I had them. I also seemed to operate in two modes - crying or ripping off your face angry.

  • phxsunshine
    phxsunshine Member Posts: 156
    GmaFoley, I have had only one full blown anxiety attack in my life, waiting for the results of my Oncotype test to come back.  They were delayed because my first dumbass Onc (I fired her BTW and my breast surgeon doesn't send patients to her anymore) went on vacation without telling me or allowing one of her fellow Docs to relay the news.( I just figured it was bad news and they were figuring out a game plan and I would have been bald for my daughter's wedding.) The ER knocked me out with Ativan.  Since then, I get the start of them from time to time.  I get an electric jolt panic feeling in my gut/solar plexus, sometimes I wake up out of a sound sleep with that feeling.  I take some Xanax, as little as possible, starting with .25 mg - I use a pill cutter.  Could be the arimidex screwing with your body chemistry maybe?
  • phxsunshine
    phxsunshine Member Posts: 156

    JO, did you take Xanax regularly and for how long?  Or just as needed?  I'm really trying to figure this out so I can live with the Arimidex or something.  Thanks for posting.

  • gmafoley
    gmafoley Member Posts: 5,978
    Jo, thanks for the idea but xanax knocks me on my butt Undecided. A quarter of the smallest tablet and I'm out for at least 24 hours... I have a computer job I need to stay awake for... I will be talking on the phone to my ONCs office.. I had 12 hot flashes today, where I had to strip and turn on the fan... Not a good picture, I know... but trying to do this... I just want to cry....
  • Blessings2011
    Blessings2011 Member Posts: 1,801

    Well, the MO has tracked me down! I see her tomorrow morning, and I'm SURE I'll come home with instructions to start the Anastrozole!!! I've had it in my medicine chest for almost 9 months!!!

    When I joined the Optifast program last March, she gave me a reprieve on taking the Anastrozole. (Had a BMX with TEs in December 2011....at first, she let me recover from the surgery, then when she found out I was going into the weight loss program, she was THRILLED and said to wait on the AI. Something about needing to tell where any SEs were coming from.)

    So I've lost 54 pounds so far (and 63 inches), and have ten pounds to go to meet my goal. (I'm 5'5", currently at 150, want to be 140 pounds.) I just had my exchange surgery, so still have a few nights that need Norco or Valium.

    The biggest change is in my overall health. I've gone off ALL my meds....and my blood pressure, blood sugar, cholesterol, and kidney function are all totally normal!

    My fibromyalgia has improved SO much, thanks to a gluten-free diet, and daily exercise. (I'm frustrated right now because my PS is not releasing me to go back to exercising for two more weeks.)

    So naturally, I'm reluctant for any of that to change. But over the months I've come to realize 1)I won't know until I try; 2) Yes, the SEs are easier to treat than a recurrence; and 3) Maybe I'll be one of those women who have little or no SEs!!!

    I'm just hoping the changes I've made in my body so far will go a long ways towards staving off the worst of the SEs. And I'm going to ask the MO if I can start "low and slow!"

    Wish me luck......

  • kjiberty
    kjiberty Member Posts: 687

    Blessings:  WOWOWOWOWOW!  You are an inspiration.  Congrats on your weight loss.  I have 25 more to go; I've lost 25 since last October.  I finish radiation this Friday and hope to start back at WW in a couple of weeks.  Again, congrats on your efforts--they're paying off.