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Doing Well on Aromatase Inhibitors (AIs)

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  • Tappermom383
    Tappermom383 Member Posts: 401
    edited August 2017
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    Scrafgal - sounds like you're approaching AIs with a great attitude! I've avoided reading a lot of the negative comments. I started on anastrozole on July 17. So far, so good! I had read that the Teva brand of the generic Arimidex produces fewer SEs so I asked my pharmacist to get that for me, which she did. I also read that Claritin helps with some of the aches and pain. Since I had some (Costco brand) in the cupboard, I've been taking that. Don't know if it's making a difference or not but I figure it can't hurt!

    Best of luck as you finish your chemo and get started on the next leg of this unasked-for adventure!

    MJ

  • butterfly1234
    butterfly1234 Member Posts: 2,038
    edited August 2017
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    Scrafgal - welcome to our thread. As I posted above I've been taking Armidex name brand since May 9. My worse side effects are a sore right toe and achy right thumb. All manageable and I'm not complaining. I exercise regularly and some of the achiness is from that.

    Take it one day and pill at a time, we are here to provide support. Gentle hugs all.

    Medicating

  • 2FUN
    2FUN Member Posts: 789
    edited August 2017
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    My BS said she has a number of patients that took glucosamine to help with joint aches, so I am going to try that.

  • butterfly1234
    butterfly1234 Member Posts: 2,038
    edited August 2017
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    what dosage of glucosamine?

  • ReginaZ
    ReginaZ Member Posts: 19
    edited August 2017
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    Just wanted to chime in to say 'so far so good' on the Anastrozole. I've been taking it for over 4 months and no side effects. The first month I had some PMS-type mood swings, but they went away. I take a generic (not Teva). Keeping my fingers crossed that this continues, as my MO tells me it cuts the risk of recurrence by 30-40 percent

  • chisandy
    chisandy Member Posts: 11,256
    edited August 2017
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    I have a whole bunch of Alegrias. I do have to be careful to pad any sharp edges with molefoam, as I have very sensitive feet and blister at the drop of a…shoe. I’ve also found Vionic shoes to be comfy and affordable. But I’ve gotten five to seven years out of my Finn Comforts without needing a resole.

    Been 18 mos. on letrozole, and the SEs have remained level. Developed triggering in another finger, but it doesn’t affect me so I’m not going to risk an LE flare with another cortisone shot, much less surgery. Hard to distinguish OA from AI-induced joint pain, but regardless of the cause, I treat it the same. I have developed mild anemia, detected by my PCP as a pattern of declining hemoglobin over the past two years (my last normal result was my pre-lumpectomy bloodwork), for which they still haven’t found a cause. Had an EGD yesterday, but it showed only the hiatal hernia I already knew I had (and the erosive lesions from four years ago, likely from overusing NSAIDs after my knee replacements, are gone so NSAIDs are no longer verboten). They’ll 'scope the other end (ugh) in a few weeks, but since my RBC & WBC are normal despite low ferritin levels, whatever the cause the treatment is the same: iron & vitamin C. Oddly, it’s asymptomatic—no fatigue or shortness of breath. LDL-C spiked, but a statin reversed that. So I’m chugging along, working out and trying to resist sugar (easier said than done) to keep from gaining more weight (I lost 5 lbs. since joining the gym, but I still wince in shock at my reflection in store windows—why do we always seem to look thinner in mirrors)?

  • MickeyB17
    MickeyB17 Member Posts: 103
    edited August 2017
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    Hi, I'm starting AI after radiation finishes this month - apx 9/1. So appreciate these posts because women in need of support reach out when having difficulties (understandably) - but can be unsettling to those of us at the start. I can be a master at anticipating worst case - oddly - it's how I prepare myself. I've found with BC - this is not a good strategy... What a journey we are all on. Bless us!

  • ruthbru
    ruthbru Member Posts: 46,953
    edited August 2017
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    Do NOT spend time reading the negative 'worse case scenario' threads!!! Be glad it's an option (our triple negative friends would be thrilled if there was something they could take after the initial treatments to lower the risk of recurrence!!!!); go in expecting that you will be fine, and deal with SE when and IF they occur. Also remember, you are starting an AI right as you finish 'active treatment', so some of the problems ladies attribute an AI are actually post-treatment issues they would be dealing with whether they were taking an AI or not.

  • MickeyB17
    MickeyB17 Member Posts: 103
    edited August 2017
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    ruthbru, you are correct. My MO said more or less the same thing. One other thing I started doing was to notice the normal aches and pains every day before I start, so I will not attribute everything to BC or tx's. Some of this stuff is gonna happen anyhow! And you are right about gratitude for this treatment. Thank you for the reminder.

  • elainetherese
    elainetherese Member Posts: 1,627
    edited August 2017
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    Well, I'm still feeling pretty good on my AI (Aromasin). I'm still working on my sleeping, and have reduced my alcohol in-take. But, I did my biannual dexascan, and it said I have full-blown osteoporosis. I was osteopenic when I started Aromasin, and osteoporosis runs in my family, but...... So, now I'm on Fosamax (my 6th prescription drug!). My MO says I will have to wait for my next dexascan to see whether the Fosamax is working unless I want to pay for another dexascan out-of-pocket.

    Still, it could be worse. Happy to be feeling good and able to exercise daily. Yes, I'm grateful that we have all these treatment options!

  • scrafgal
    scrafgal Member Posts: 412
    edited August 2017
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    Ladies,

    Thank you for the warm welcome and for the encouraging posts!   I am really feeling better about the AIs and the possibility for a decent experience.  I really needed this thread.  Thank you, Butterfly1234, for starting this discussion. 

    When I start AIs (in late September) I will have to let you ladies know how it goes!

  • Tappermom383
    Tappermom383 Member Posts: 401
    edited August 2017
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    Great advice from Ruthbru! I wholeheartedly second it. It's all too easy to fill our heads with the negative and dwell on it. Thank goodness for Butterfly and her urging folks to share their positive experiences. I only have three weeks of Arimidex (Teva anastrozole) under my belt but so far, so good. I'm actually sleeping better; take it at night. I still wake up to pee but, instead of sitting up and reading for an hour, I go right back to sleep. I'm still feeling fatigued from my rads; my RO told me that could last six weeks and I'm not there yet.

    Best of luck to you, soon2bretired, as you complete your rads and take this next step. We're all walking right beside you!

    MJ

  • Goincrzy8
    Goincrzy8 Member Posts: 79
    edited August 2017
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    I have been on Anastrozole since Feb. I take at night because it seems I get sleepy about half hour later. Like Tapper I wake up to pee, but go right back to bed. I was having some hip pain, I now take Glucosamine/chondroitin and a calcium-magnesium-d3. No joint pain. I still have some fatigue from end of Radiation which finished on July 13.

  • butterfly1234
    butterfly1234 Member Posts: 2,038
    edited August 2017
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    All very encouraging words and great advice. A heartfelt thank you to all with love.HeartMedicating

  • 2FUN
    2FUN Member Posts: 789
    edited August 2017
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    She said :what ever the OTC dosage is". Not too.much info!

  • Msjackiefan
    Msjackiefan Member Posts: 4
    edited August 2017
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    I am on anastrazole for just over 4 years. I would say a few more joint aches and some memory loss I also attribute to being post- menopausal.


  • susanga
    susanga Member Posts: 66
    edited August 2017
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    I am on Arimidex for 3 weeks and so far no problem. I take the brand. I take it in the morning and actually sleep better now. Good luck to al

  • JuliaJazz
    JuliaJazz Member Posts: 175
    edited August 2017
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    Thanks everyone for your posts.  I will start Arimidex in mid-September and this thread really helps me to know what questions to ask my MO.

  • JuliaJazz
    JuliaJazz Member Posts: 175
    edited August 2017
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    Thanks BosumBlues.  I appreciate the insight.  I guess I will give it a try and see what develops.

  • hippiegirl
    hippiegirl Member Posts: 12
    edited August 2017
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    Hi Everyone,

    I too, am very glad that Butterfly started this! Reading how you guys are doing is giving me hope for when I try my own.

    Hoping to hear more positivity from us!

    HeartHippie Girl

  • JuliaJazz
    JuliaJazz Member Posts: 175
    edited August 2017
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    On the topic of hormonal therapy, one of the gals on another thread shared this link. It is an article about Dr Angela Brody who passed away last month.  She discovered the Aromatase inhibitor.  Her dedication & perseverance helped save many women lives. 

    https://www.washingtonpost.com/local/obituaries/angela-brodie-scientist-who-helped-make-major-advances-in-breast-cancer-treatment-dies-at-82/2017/06/08/b3729a48-4c4e-11e7-a186-60c031eab644_story.html?utm_term=.cbe67526b64a

  • ruthbru
    ruthbru Member Posts: 46,953
    edited August 2017
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    Thank goodness for people like Dr, Brody!

  • nancyd
    nancyd Member Posts: 556
    edited August 2017
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    I started Arimidex almost nine years ago. I was switched to a generic version when they came out. Neither one has caused unbearable side effects.

    I have arthritis in my hips that may have ben exacerbated by the AI, but since I haven't stopped taking it, I don't really know. Having been staged as 3A and highly er+, I don't think I'll chance it. A dose of ibuprofen takes care of the pain. That's been the worst of it for me, with a relatively easy fix



  • coachvicky
    coachvicky Member Posts: 984
    edited August 2017
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    Well ... I have been handling the brand name Arimidex very well.

    Last couple of days, however, my knees have hurt. Then I remembered I ran at the YMCA Thursday for the first time in ages. The track just looked so appealing and challenging me to a brisk run. I usually just speed walk.

    What was I thinking? I guess I wasn't thinking and I can't blame Arimidex! LOL

    Coach Vicky

  • JuliaJazz
    JuliaJazz Member Posts: 175
    edited August 2017
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    Nancy and Vicky,  Nice to hear from both of you.  I have arthritis in my knees and hips so I imagine I will have some pain but glad to hear that it may be tolerable.  Have a great week.

  • 2FUN
    2FUN Member Posts: 789
    edited August 2017
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    I am almost a year on Femara, with a few episodes of not taking it, due to other health problems. I think one important thing to remember is ,as humans, we all need 60 min of physical activity a day. As women on AI meds, we really need that, including resistance activities, seeing as none of us are 20 years old.I feel so much better (maybe not any individual day. But cumulatively) when I am exercising at at least a moderate intensity, and consistently. I encourage you to just walk out your door snd back, especially if you have having AI difficulty. ( sorry, but not sorry for the soap box)

  • ruthbru
    ruthbru Member Posts: 46,953
    edited August 2017
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    I will enthusiastically jump up on the Exercise Soap Box with you 2FUN! Exercise is the absolute best thing we can be doing for ourselves, and for many reasons. It makes you look better, feel better (releasing the happy endorphins in your brain), makes every part of your body work better & decreases the risk of a long list of diseases and conditions, it can increase balance, slow down the effects of aging, it can help minimize the SEs of the AIs; and it is the number one non-medical thing we can do to reduce your risk of beast cancer recurrence.

    If you want some exercise buddies, come over to The Lets Post Our Daily Exercise thread on the Fitness Forum and join us. A great group of ladies at all stages of treatment and beyond, and at all fitness levels too.

  • bareclaws
    bareclaws Member Posts: 246
    edited August 2017
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    Um, it's getting crowded up here on this exercise soap box. No excuses. It's imperative for wellness and peace-of-mind...to know that I participated in my own treatment/recovery, whichever it turns out to be. No matter how awful I feel, it's always better after I spend some time sweating, heart pounding, gasping for breath. And knowing that cancer cells just hate it gives me vicious pleasure.

  • iatigger
    iatigger Member Posts: 269
    edited August 2017
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    Want to thank everyone for the not so negative side effect talk. After 4 1/2 years on Tamoxifen I was the lucky one to get the little mentioned side effect of endometrial cancer. Fortunately caught early and with the hysterectomy considered cured. But now that I am in forced menopause the onc wants me to go on Aromasin. But after the Tamox tried to kill me and reading the possible SEs with Aromasin just having a hard time making the jump. Have another few weeks of healing from surgery so will keep reading this post until I have to make a decision. Will start on the exercise parade with you all at that time as well. :)

  • coachvicky
    coachvicky Member Posts: 984
    edited August 2017
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    iatigger ... I am sorry about your other cancer and your recent struggle.

    I struggled on 2 generics but with the brand name I can hardly that tell I take it.

    Best wishes.

    Coach Vicky