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

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  • nayda985
    nayda985 Member Posts: 361
    edited June 2017

    haha@ Vicky😆

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  • PontiacPeggy
    PontiacPeggy Member Posts: 6,778
    edited June 2017

    CoachVicky, I'm with you. About the only thing I don't do now is smoke - I quit 18 years ago. But I intend to live my life to its fullest. I firmly believe that stress caused my BC and nothing else (except bad luck).

    HUGS!

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited June 2017

    you go girl💃🍷.

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  • Nancy618
    Nancy618 Member Posts: 374
    edited June 2017

    LOL Vicky!!! I feel pretty much the same way, although I didn't so ALL the right things before BC, but I feel I ate pretty healthy. We don't eat processed or fried foods much. I've always had a high cholesterol, nothing changes it. And yet I still got cancer. At this point in my life, I'm going to be sensible, but I'm not going to deprive myself of something I really like in moderation.


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  • wabals
    wabals Member Posts: 242
    edited June 2017

    I am with you Vicki!

    I also want to tell you about my experience with arimidex. I am in the ATEMPT trial at Johns Hopkins for stage 1 BC which is triple pos. I was on tdm1 for a year and started arimidex after rads. I have been on it 16 mos. During treatment my liver enzymes, always very low normal, gradually crept up to high normal and sometimes higher. I was not concerned because every one on tdm1 had elevations, some had to go off trial because they were so high. After finishing chemo I thought they would come down but did not. My gastroenterologist was concerned enough to do a sonogram which showed fatty liver tho I am normal bmi and my chol and triglycerides are great. Then he did more labs which showed elevated ANA and elevated smooth muscle lepton abs indicative of autoimmune hepatitis. I did research and tho rare arimidex has caused this in some people, mostly older people. If your enzymes are elevated get it checked out. I see him tomorrow to find out more.


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  • Nancy618
    Nancy618 Member Posts: 374
    edited June 2017

    Well, that certainly is scary about the autoimmune hepatitis! I just started on Arimidex today, but I have an appointment with my MO in August and he's doing bloodwork first.

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  • coachvicky
    coachvicky Member Posts: 1,057
    edited June 2017

    webals

    Thanks for your post. I will discuss this at my next appointment.

    Coach Vicky

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  • wabals
    wabals Member Posts: 242
    edited June 2017

    coach Vicky

    It was smooth muscle actin elevation, not lepton

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  • DenvMom
    DenvMom Member Posts: 27
    edited June 2017

    I went on Atkins diet when I started Arimidex (or the generic).  I lost 20 lbs and have kept it off as long as I keep my carbs low, I watch what I eat.   I do have thin bread at lunch, but never have carbs at dinner except vegi carbs.   I agree with Vicky live your life.  I needed to drop 30 lbs but only dropped 20.  Am I upset heck no.  Live your life do your best and be happy!

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  • Nancy618
    Nancy618 Member Posts: 374
    edited June 2017

    I've only started on Arimidex this week, so I hate to complain, but I went to ZumbaGold for the first time in 2 weeks and kept it very low impact, but my hips were so sore, I could hardly wallk when I got home. Maybe it's just relative inactivity for a couple weeks.

    Has anyone experienced depression or just being really emotional? Had an incident happen today that just knocked me for a loop and I can't stop crying. Plenty of sleep last night, so I can't blame it on that. Although, I did just finish 4 weeks of radiation. I hate feeling this way physically and mentally.


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  • kira1234
    kira1234 Member Posts: 3,091
    edited June 2017

    Nancy many of us have SEs from the lack of estrogen in our bodies. For the muscle pain I suggest try taking claritin with the arimidex. I've been doing that personally and it's really helped.

    For the depression I'm taking it a day at a time. I don't want to take drugs that I'll become dependent on. When I spoke with my oncologist about depression I asked if I could just quit when I stopped arimidex and he said no.

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  • lrwells50
    lrwells50 Member Posts: 254
    edited June 2017

    That's very scary about the autoimmune hepatitis. I had infectious hepatitis, which I think is A, 35 years ago.

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  • Nancy618
    Nancy618 Member Posts: 374
    edited June 2017

    Kira, I feel the same way about taking antidepressants. I was taking Elavil for sleep issues, but it stopped working. However, since then my sleep is horrible and now the depression. If it continues I'm going to ask my pcp if maybe a higher dose of elavil might help both issues.

    I have heard about Claritin, but for bone pain rather than joint pain. It certainly is worth a try. Thanks.

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  • kira1234
    kira1234 Member Posts: 3,091
    edited June 2017

    Nancy have you tried melatonin? I take it nightly and it seems to be working. Remember there are other choices in medications. My oncologist has already told me he'll work with me. I also have a nurse advocate that calls me monthly and is available 24/7 whichI greatly appreciate.

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  • Tappermom383
    Tappermom383 Member Posts: 643
    edited June 2017

    Nancy, I told my RO nurse today how on the edge of tears I am all the time now. If someone does or says something kind, I have to bite my lip and hold on so I don't break down. She said that's from the fatigue. We're just not ourselves - YET! But we will be.

    MJ


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  • COnative
    COnative Member Posts: 1
    edited June 2017

    I have the same concerns. Started AI 3 months ago after 15 days of radiation, no chemo, lumpectomy in Jan. I'm also feeling muscle and joint aches more than usual I think, but am also exercising more, gardening, and just getting older. Also have osteopenia and arthritis in right knee. And torn labrums in both shoulders so some upper arm pain. So I'm not sure what's causing my increased pain, and haven't taken more than and occasional aspirin. Hope this doesn't last for the next 5-10 years.

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  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited June 2017

    Nancy, I have been on Arimidex for almost a year. I also had an oopherectomy a few months prior and I cry at the drop of a hat. I will say that it has gotten better and looking back, the crying jags usually happened the day after not sleeping well. I try to just tell myself that it is the medicine, cry a little, then move on. Another thing that helped me with depression when I was first diagnosed was magnesium. I put Natural Calm (from health food store) in my tea every morning and it has worked wonders.

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  • Sickofpink
    Sickofpink Member Posts: 190
    edited June 2017

    ENDING AROMASIN AFTER 5 YEARS.

    Hi everybody,

    After surgery, chemo, rads I found several years of relief from major SE's with hit and miss, I had great results with daily doses of: Aromasin: Tumeric, Magnesium, Bioten, B12, D3, Alpha Omega 3, soft Kleenex, eyedrops.

    I am of the med for 2.5 weeks now, off the supplements for one week.

    Anyone ahead of me know what to expect? Will my brain power return? shoulder flexibility? shoe size? hair growth? Drippy nose and dry eye?

    Thanks,

    Leslie

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  • Suz-Q
    Suz-Q Member Posts: 205
    edited June 2017

    Hi Sickofpink, Lucky You! I have 3.5 more yeas to go. I hope your life returns to normal, whatever that is after cancer. Please keep us posted. I think we all hope after 5 years that our bodies will rebound


    My SE are minimal compared to others. I do not have any trouble sleeping at night, but I am much more tired than bebore BC. I think the stress of BC has taken its toll on me. My joint pain has increased over the last year and taking small breaks doesn't seem to help. My libido is a fraction of what it was. I can deal with the body pain, it's the mediocre sex and vaginal atrophy I'm very unhappy with. I'm working on that end of it with my Gyno and seeing/feeling some improvement.


    I'm considering Claritin. Some of you say it won't help joint pain and that it is fore bone pain. I think mine is joint pain. I'm also worried about other SE from it. Does anyone have any thoughts here? Thanks!

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  • bjb01
    bjb01 Member Posts: 77
    edited June 2017

    Suz-Q.......I'm well aware that even amongst credible doctors, opinions vary greatly. I can only offer what my team has shared with me. I was very concerned with what I knew would be vaginal atrophy and a loss of sex drive. I had been on Vagifem for a while and was given the OK by both my GYN and my Oncologist to continue. The treatment is vaginal and remains localized, unlike oral hormones that make their way through your liver. It is the one thing that has kept some real normalcy in my life. (not to mention fewer yeast infections from the potential dryness) it's typically dosed for a vaginal insertion every 4 days. I push it back to every 6, just my way of compromising comfortably :)

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  • doxie
    doxie Member Posts: 1,455
    edited June 2017

    Sickofpink,

    I've been off Aromasin/exemestane for almost 3 months now. I decided the benefits of continuing were minimal after five years.

    What has improved: No more joint problems anywhere, sciatic nerve pain gone, my mind is sharper, libido improved with healthier vaginal area, and an edginess/authoritiveness in my personality has mellowed - more laid back (I am a supervisor in a complex department in a very stressed organization.)

    No different yet: Still a bit dry eyed. I haven't been doing eye compresses lately for blepharitis, though. (I think this is really a chemo SE.) Could be summer allergies too. Can't tell about hair. I started taking biotin about 6 months ago and experienced a lot of new growth. It will be hard to tell if going off the AI will make more difference.

    What is worse: Sleep. For some reason the exemestane helped me sleep better.

    I didn't have a weight problem on the drug, as it was stable. I had hoped the body might assign fat around my belly and love handles elsewhere, but so far no luck. Guess I'm stuck with a body, though at a healthy BMI and relatively fit for 60+, that looks like a women well past menopause.

    To reduce risk since I didn't extend beyond 5 years, I am trying to reduce my BMI to 22 or lower. I get lots of exercise, but more won't hurt either.

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  • Nancy618
    Nancy618 Member Posts: 374
    edited June 2017

    Kira: I have tried melatonin in the past and it didn't work. I got the OK from my MO to try LUNA (available on amazon) which has a combination of natural ingredients including melatonin, valerian, chamomile, magnesium, L-theanine. I haven't ordered it yet, because right now I'm doing ok with sleep.

    MJ: It's good to know that some of what I'm feeling is fatigue. I'm sure it is. I just wish everyone understood just how debilitating fatigue is and not insinuate that it's all in my head or that I'm using it as an excuse. I was DEEPLY hurt yesterday when someone said that. And because I'm tired and weepy, I'm having a hard time getting over it.

    PeregrineLady: That's good to know as the sleep med I want to try has magnesium in it. Will have to look for the Natural Calm.

    So my dry eyes in the morning might be a side effect? I've had a slight problem with it in the past few months, but wow, yesterday, I was seeing double lights on the traffic signals. It's never been THAT bad before. It gets better as the day goes on fortunately, but early in the morning, my eyesight is horrible due to the flattening of the cornea because of dryness.

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  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited June 2017

    Nancy, there will always be people who don't get it. My brother-in-law just had surgery for colon cancer. His wife asked my husband about my eight hour surgery for reconstruction. After my husband explained what exactly I went through, she said, "I had no idea. I wish we had been there for her." My point is that until they have walked in your shoes, they just don't understand.
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  • martha323
    martha323 Member Posts: 79
    edited June 2017

    Greetings - I'm so glad to have found this topic! I have one year and three months (yes, I'm counting!) to go before I stop taking anastrozole. Recently, my 'coping energy' has been very low as far as tolerating the SEs. I've been feeling discouraged and frustrated with the fatigue, stiff muscles, and back pain. For almost four years I've pushed through many activities even though I often feel miserable. No more! My resolve is to manage my energy and be more realistic. Friends don't get it - well, .......! I want to finish the five years because I'm high risk for recurrence. Not only did I have positive nodes, also had LVI invasion and a questionable margin! I can do this, right?

    I'm happy to hear that the symptoms go away after a while - really looking forward to having my brain back and my sense of humor! Thank you for your posts - you all made my day.

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  • Tappermom383
    Tappermom383 Member Posts: 643
    edited June 2017

    I didn't realize fatigue and dry eye were SEs of AIs. Yippee - something to look forward to. I thought this fatigue would end with rads. One day at a time. I have #24 today - then only nine more to go. Single digits!

    MJ

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  • Nancy618
    Nancy618 Member Posts: 374
    edited June 2017

    PeregrineLady: Well this person who was so insensitive SHOULD know what I've been through. He was right there with me.

    Martha: I laughed at "having my brain back"...I look forward to that too, although it was a bit "iffy" before all this happened. I do NOT look forward to 5 years of SEs.

    Kira: My oncologist's nurses are GREAT for working with me about the meds. I just don't want to become "that" patient so early in the game. We've already switched meds once in less than a month.

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  • PontiacPeggy
    PontiacPeggy Member Posts: 6,778
    edited June 2017

    MJ, I didn't know about Arimidex causing dry eyes either. My optometrist put me on moisturizing drops this winter when I went in to investigate cataract surgery (which I did have). We figured it was my use of Benadryl. I will be using them forever. Aside from some hair loss (both Arimidex and heredity), I'm doing fine on it.

    HUGS!

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  • Nancy618
    Nancy618 Member Posts: 374
    edited June 2017

    Peggy: Can I ask which moisturizing drops you use? I need to get some. I had a bit of dry eye before, but the last two days have been really bad in the morning.

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  • Trishyla
    Trishyla Member Posts: 1,005
    edited June 2017

    Nancy 618,

    I've had very dry eyes since my corrective laser surgery two years ago. Chemo and AIs have only exacerbated the problem. The best relief I've had is with Oasis Tears Plus. They come in individual ampules with no preservatives. You can get them on Amazon. They're not cheap, but, for me, they're worth every penny.

    Trish

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  • Nancy618
    Nancy618 Member Posts: 374
    edited June 2017

    Trishyla: Thanks for the info. I only get the dry eyes overnight. I've been told I probably sleep with my eyes open a little bit which dries them. I've used ointment in the past and hated it. Will give these a try.

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