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

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Comments

  • ed111
    ed111 Member Posts: 54

    MexicoHeather -- thank you! First day on AI went almost without food easily. Just no desire. If this is a SE I take it any time! )) No lumpectomy yet. I take AI as neoajuvant to watch progression for three months. Will be fasting!

  • GrandmaV
    GrandmaV Member Posts: 1,045

    Hi everyone, does anyone else bruise easier on anastrozole?

  • josieo
    josieo Member Posts: 140

    Hi GrandmaV,

    Hmmmm...I take anastrozole and it does seem that my hands bruise very quickly, and deeply. Because I also take low dose aspirin, I assumed the bruising was due to the aspiri. Nothing else that I have noted from taking anastrozole, but it could well be. Thanks for posting-let’s see what others say.

  • Cutiekool
    Cutiekool Member Posts: 2

    hi Peggy. I have a similar do and my onc said 5 more years. I want to stop sick of side effects ...do you have ant SE

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    CutieKool, I think our situations are slightly different since you had a positive node. I don't know how old you are but I'm 73 (soon to be 74). My MO says the risks of continuing anastrozole (such as bone loss) outweigh the potential benefits given my diagnosis. I'd be willing continue if he wanted me to. My SEs? Can't say as I have had any problems I can attribute to anastrozole. I take Fosamax for my bones and my osteopenia that I had before I started it is apparently stable. I don't know if he wants me to continue that or not.

    If your SEs are affecting your QOL, the perhaps you should have a heart-to-heart with your MO. It's a hard decision. Good luck with whatever you decide.

    HUGS!

  • annieb4
    annieb4 Member Posts: 25

    Hey Cutiekool,

    Our situations sound a lot alike. I went a little over 5 years and said I am done. My MO doesn't know it yet, I go in for my 6 month check up next month and will let him know. He had told me 5 more years.... I am sick and tired of the SE's. Now I have osteoporosis and have to have the dang Prolia shot. It was and still is a hard decision to make whether or not to keep taking the drugs. 


  • peregrinelady
    peregrinelady Member Posts: 416
    Annieb4, you might want to ask your oncologist about the BCI test. It will help you decide if 5 more years is necessary.
  • missouricatlady
    missouricatlady Member Posts: 894

    Thank you for the posts and the positivity. I go in tomorrow to start Herceptin and Perjeta and imagine the Arimidex will start then. I still have a few weeks to wait for radiation. I recently bought a book called Uplift, Secrets from the Sisterhood of Breast Cancer Survivors (used for $5 off Amazon Smile) that I would recommend. I've only read the Foreward and Radiation chapter. The author emphasizes positivity and I have to agree. We have a sisterhood here, I can always find good advice and comfort with you ladies. I need to ask if they will put me on Fosamax too. Wishing you all the very best, Lisa

  • mnsotamom74
    mnsotamom74 Member Posts: 28

    Second day on Arimidex, yesterday slight nausea that was helped with zofran. Today the nausea was awful and the zofran barely helped, I finally took a nap to escape the symptoms. Will that calm down in time or is it a daily thing I have to live with

  • mysticalcity
    mysticalcity Member Posts: 184

    CBK and CindyNY--I was able to get my local CVS to special order the TEVA brand for me even though they discontinued it in their store. You might try that. So far they have done it the last 2 refills. I told them I was moving the prescription otherwise that I could only take the TEVA brand. I don't know if the pharmacist is just trying to help me out--he is a nice guy--or if they would do that at any of their stores. You could at least ask.

  • mysticalcity
    mysticalcity Member Posts: 184

    mnsotamom74

    I think it may calm down. I felt very sick the first 7-10 days--like I had the flu bad. . . .then it eased up. The PA at my MO office said that she finds many times the bad side effects seem to calm down after the first couple of months.

  • mysticalcity
    mysticalcity Member Posts: 184

    GrandmaV

    I seem to bruise much more easily now--but I am also taking a host of supplements like Turmeric and a daily aspirin etc. etc. . . so I wasn't sure what was causing it--it may be the anastrozole.

  • mysticalcity
    mysticalcity Member Posts: 184

    MJ/Tappermom383

    I take my anastrozole in the morning, at night to help sleep I take melatonin and magnesium

  • hikinglady
    hikinglady Member Posts: 625

    mnsotamom74 I always take my Anastrozole AFTER food in the morning, so stomach is coated, and I'm up and about, not lying down. That helps digestion go better than horizontal position (avoid gastric reflux, etc.) Drink LOTS of water--that also can help digestion go better. I haven't had nausea on my AI. That sounds very awful; I'm so sorry!

    EVERY one of my side effects lessened or disappeared over time, for sure. I do wish that for you.

    In reading lots of these threads, I've noticed that sometimes when we notice a side effect, it occasionally turns out to be caused by something totally different, coincidentally showing up when we start a medication. So, consider the slight possibility that you have another reason for nausea, like a virus? Just one idea to ponder, in case it might NOT be the AI.

    I am curious to know whether my 'body adjusted' over time to the AI, as the MO predicted, or whether that's code for 'my brain got used to everything and stopped complaining about it.' I think those two might be the same thing. Yay for neuroplasticity!

  • cindyny
    cindyny Member Posts: 1,292

    Mysticalcity- I just threw in the towel and take the Accord brand that Caremark sends. I had a few issues at the start, but quickly settled back to normal.

  • cindyny
    cindyny Member Posts: 1,292

    Mysticalcity- I just threw in the towel and take the Accord brand that Caremark sends. I had a few issues at the start, but quickly settled back to normal.

  • Tappermom383
    Tappermom383 Member Posts: 401

    Thanks, mysticlady. I’ve taken the anastrozole in the morning for several days now. I seem to be sleeping slightly better. I also take magnesium at night (started taking it to offset my terrible moods - I was lashing out at my DH for no reason whatsoever - the magnesium definitely helped). I have melatonin but haven’t noticed it making much difference.

    MJ

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    I've always taken my anastrozole in the morning - before breakfast. Never had a problem. Like many of you, I was very worried when Walgreen's switched me from Teva (because they couldn't get it) to Accord but I haven't noticed any difference. That was a relief. The only supplements I take are folic acid and Vitamin D3. I also take Fosamax, pepcid, benadryl and claritin.

    Hope those of you with problems find they resolve quickly.

    HUGS!!

  • ingerp
    ingerp Member Posts: 1,515

    HikingLady how is your energy level? I’ve been tolerating the anastrozole fairly well but I just feel tired these days. The things I’ve been doing at the gym seem harder. I’m wondering if it could have to do with the AI (I’m about five months in). (Or maybe just allergies??

  • Taco1946
    Taco1946 Member Posts: 630

    I seem to be tired but I have just attributed it to age. On the other hand, I tend to take a nap when I'm bored. So do I do more or less???

  • hikinglady
    hikinglady Member Posts: 625

    Ingerp My energy doesn't seem different because of the AI. It's slower than 10 years ago, but not tons worse than when I started my AI. I do 1 hour of exercise every day, first thing, early. If I don't, then I'm sluggish all day. I retired right before b.c., and had noticed that normal aging (age 60 at that point) had made me feel more easily fatigued and less energetic. That's how I feel now. I sit and rest between huge exertions. I do a lot of gardening and activities, and I take rests, sit and drink a bunch of water, and I include some breaks and sitting when I get things done that are exerting. I don't feel hugely different on energy from when I was 60 before b.c. diagnosis and all these traumas started.

  • ed111
    ed111 Member Posts: 54

    I'm reading about AI effects on cognitive function. Studies, albeit limited, show that AI have more adverse effects on brain functions, particularly memory and production of serotonin, than tamoxifen. That makes total sense, cause AI block estrogen production almost completely, while tamoxifen balances it. Seems like there is no remedy for it, what can you take to 'replace' estrogen in yr brain. Thinking of switching to tamoxifen despite all the benefits of AI.

  • ingerp
    ingerp Member Posts: 1,515

    Thanks, HikingLady. I'd like to think this is temporary. I still work full time, although from my house, so most weekdays I head to the gym after work. I do go on weekend mornings. I much prefer that schedule--will definitely change to all mornings once I'm retired, although that's still several years away. Taco I love naps! Sometimes I schedule my weekends around them! I've read sleep studies that say humans were meant to nap, and we're more productive late in the day when we do. That's something else I'm looking forward to in retirement--naps every day!!

  • HausFrau
    HausFrau Member Posts: 2

    I am quite healthy, aside from the early stage cancer that was diagnosed December of 2015. I have been on anastrazole for just over three years. Initially I did fine, just a bit of low level fatigue. Lots of odd things cropped up that couldn't be explained, things that I see listed on the potential side effects on the Mayo website. About six months ago, I started to feel that everything was getting harder: energy, emotional resilience, getting sick a lot, etc. etc. For three years I have been able to ride out the ups and downs of this medicine, but in the past 6 weeks or so, it became clear that I was feeling worse more and more. I would say it got to the point where I felt crummy about 60 percent of the time. I exercise faithfully (always have) eat a healthy diet (always have) but nothing was working to help me even out my situation. I have really had to pace myself and not take on too much, hard for someone who likes to be active and involved.

    In the past when I have mentioned side effects to oncology, they have more or less said, that's not a side effect. Recently I had an oncology appt with my onc nurse practitioner. I printed out and brought a list of side effects from Mayo and ticked off all of the things I am dealing with. One of the most challenging symptoms now is brain fog, not feeling focused. It feels like I have ADHD. I have done some research on the effects of AI's on brain function, and it stands to reason that the fogginess many of us feel in menopause might come back on this drug, or be pronounced, since our estrogen levels are very low on this drug. This has been coupled with anxiety to a degree that most things that could roll off my back in the past now tend to become anxiety provoking. My oncotype was low, and in the end my onco NP suggested taking a 2-3 month break, then evaluating to see if I am feeling better and whether it seems that drug is causing the issues. At that point, we might consider switching brands or just call it a day. I am disappointed because I was all-in for taking the drug and getting the benefit. Everything I have researched online seems to suggest that the 5 years is necessary to get the benefit. I am actually surprised that my NP suggested that I consider stopping altogether, since their job has been to keep me going on this drug. I am also surprised that I haven't been offered some kind of addition, like a low-dose antidepressent, since many women seem to get these to help. I mentioned this to her and she said then there are other side effects to worry about. I am VERY sensitive to meds and may have just maxed out. Wondering if anyone else has gone through this and what choice you made. I have a high tolerence for discomfort, but this has become tough even for me.

  • tlfrank
    tlfrank Member Posts: 76

    I took Tamoxifen for 1 year. I was experiencing a lot of side effects, so my MO tested me to make sure I was post menopausal then switched me to Anastrozole. I have been taking it since February. I started spotting 4 weeks ago and am scheduled to have a trans vaginal ultrasound next Friday. I'm feeling "full and bloated" like I used to when I was still menstruating. I don't know if this is a remnant of the Tamoxifen or because of the Anastrozole. Anyone have insight to share?

  • HausFrau
    HausFrau Member Posts: 2

    HausFrau here. I have also experienced pelvic pain amd some spotting along the way. Had two uterine biopsies in the past two years, and two pelvic and trans vaginal US. Nothing abnormal was ever found. This has not happened now for about a year. It can be frustrating when things crop up and no explanation

  • hikinglady
    hikinglady Member Posts: 625

    HausFrau I think you are right to question your care at this point. I have never seen an NP, only an oncologist, through all my treatment. If I were you, I'd ask for a consult now with an MD, a Medical Oncologist at that clinic. Your issues are serious, and this is a timely decision, and a big one to make, whether it's stopping the AI or whether there's a different solution ahead.

    My own daughter is an NP, actually, and I have huge respect for that training, and I realize that an NP in oncology knows a ton. But, for the complicated, ever-changing world of breast cancer treatment, research and complicated medication decisions, I've wanted only the most totally trained and qualified care provider possible. A Medical Oncologist.

    My MO told me all along: I need to be on this drug for 5 years or maybe longer (the jury is still out--some research might eventually show importance of 10 years for my particular diagnosis, and I just started my AI 6 months ago)---it's my most powerful weapon against a recurrence. He said that if side effects became impossible to manage, we'd first have a 1-2 week 'vacation' from it, which he says (and I see research confirming this assertion) does a 're-set' in many cases, and those same side effects sometimes recede or disappear when you re-start. Then, he said, if that didn't solve the problem, we'd try the other versions of the medication. In other words, there's a whole plan ahead for me if there are huge struggles for me with side effects. Nowhere in his plan was the idea that if it's a problem I should just go off my AI.

    Brain fog and anxiety sound awful, I'm so sorry you're dealing with all that.

    All of your research and listing of your side effect struggles and your question about being offered something like an anti-depressant or other help for managing those seems very valid. I don't think this NP gave you complete information nor a complete discussion of options, if she simply said "there are other side effects to worry about." Well, of course there are. But the whole picture of everything always includes that discussion, the pros and cons, so you can be in a position to understand the cost/benefit ratio and be educated about it.

    By the way, "my oncotype was low" doesn't seem relevant to your care at this point. The OncotypeDX score is a decider for importance of chemotherapy, and that's an initial treatment decision way back when, in early 2016 probably, for you. You're on an AI for the sole reason that your pathology report shows ER+ My MO says "any % is important, no matter now small." My ER+ percentage is low, and it's still a super important medication for lowering my statistical risk of recurrence.

  • MexicoHeather
    MexicoHeather Member Posts: 147

    My gynecologist said that I would not regret the hysterectomy/ooph because of the peace of mind it gives against uterine/ovarian cancer scares. He was right.

  • Taco1946
    Taco1946 Member Posts: 630

    HausFrau - I second the "get a second opinion and talk to your MO about your SE's." I think anyone who dismisses our SE's needs to be questioned. Fortunately, I have one who really has worked with me to find the right fixes. I switched from anastrozole to letrozole at 6 months because of bad all day headaches. About 6 weeks ago, they started again. Took a week's break and really did experience a "reset." I also take a mild anti-depressant which has also stopped my hot flashes.

  • josieo
    josieo Member Posts: 140

    HausFrau,

    I echo the ladies here in encouraging you to get another opinion, preferably from a good MO focused on breast cancer. If we have to rely on AI’s as our best chance for preventingrecurrence, it’s vital that we find the best combination of AI, supportive medications, and other products, services, and techniques to help us. So advocate for yourself, and keep at it until you get some relief.

    Thankfully I have not had major SEs, but I am also thankful for an intelligent and caring MO who checks with me on any SE each and every visit, answers all of my questions, and contributes solid information to continue to educate and inform me. He support has helped me so much.

    We wish the same for you. You deserve it.