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Doing Well on Aromatase Inhibitors (AIs)

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Comments

  • butterfly1234
    butterfly1234 Member Posts: 2,038
    edited September 2017

    bluegirlredstate

    I use China Gel as needed. I feel the heat more on other parts of body, i.e. neck than fingers and wrists. My right thumb joint is swollen and right index finger. Discomfort comes and goes. Not sure if it's from Arimidex. Soaking hands in warm water with mineral salts helps. In lieu of China Gel I also alternate with bengay or arthritis cream. One pill one day at a time

  • Falconer
    Falconer Member Posts: 801
    edited September 2017
    One day at a time. I'm with you.
  • butterfly1234
    butterfly1234 Member Posts: 2,038
    edited September 2017

    HeartThumbsUp

  • loomisgal
    loomisgal Member Posts: 9
    edited September 2017

    Best post subject!! Thank you! I am 64, Stage 1 bc and the thought of estrogen suppressors has had me terrified even to the point of not celebrating all the good news for my diagnosis. Thank you, thank you! I am a youthful acting, looking, vital 64 year old woman who already eats a clean diet and exercises consistently including weight lifting with a new love partner who is walking this path with me. I also have a complete prolapse which I could not have surgery for and I panic at the thought of no estrogen for my vaginal tissues to hold up the device I have to wear to keep up bladder, etc. BUT seeing these positive posts have given me hope! Maybe I can do this!!! I am estrogen positive 95% or greater so I know suppressing my estrogen is important to my survival and prognosis.

    I can not express my gratitude enough. This is the FIRST positive information I have seen and I'm a data internet junky!!

    Much love to all of you!!

  • butterfly1234
    butterfly1234 Member Posts: 2,038
    edited September 2017

    Much love back.

    Before I began taking Arimidex, I was a nervous wreck. It's important to remember that everyone reacts differently to these AIs. My heart goes out to our BC sisters who are suffering terrible SEs from these inhibitors. That's a major factor in why I cope with the relatively annoying SEs I do have and pray daily they don't get any worse. Ibuprofen is my best friend, though I'm careful not to overdo it.

    I am 66 and often wonder how much of these joint issues are part of the normal aging process. I am monitoring closely should things get worse because I know there's a link to the AIs.

    My advice is to be aware of any significant changes in your body. Try to take itone day, one pill at a time. Don't expect the worst and try not to read about the really serious SEs. Be aware, but try not to dwell.

    Above all keep moving with exercise. From everything I've read, exercise is vital for keeping our flexibility, our tone, managing our weight and fighting reoccurrence.

    Love and gentle hugs to all.

  • leesad
    leesad Member Posts: 100
    edited September 2017
    Just checking in as I've been on anastrozole (Teva) for 22 days now and so far so good! I know it's early in my AI experience but I've been good. Exercising every day and feel good. I even have to say since I was put in the chemopause and then the ovarian suppression with the Zoladex, I feel more even as far as my moods go. I used to have the monthly hormonal mood fluctuations and I don't get them anymore. No up and down mood swings, no bloatedness or monthly food cravings....just feel more in control. I was very anxious to start AI's due to all I've read but I'm ok so far.
  • butterfly1234
    butterfly1234 Member Posts: 2,038
    edited September 2017

    ThumbsUp Great to hear. Thank you for sharing and thinking positive thoughts for you.

  • pupmom
    pupmom Member Posts: 1,032
    edited September 2017

    Loomisgal, so happy you like this thread! A lot of us felt we needed to discuss how these meds are generally well tolerated. Understandably, people who are having problems post a lot, because they're looking for help and support. But the reality is that most do ok, and the meds absolutely save lives. Best wishes!

  • Tappermom383
    Tappermom383 Member Posts: 401
    edited September 2017

    This IS a great discussion thread, Loomisgal! Butterfly1234 paved the way for me as she started on anastrozole a couple of months before I did. Like her, I have tried to steer clear of the negativity and waited to see how I would do. So far, so good - despite being switched from Teva to Accord generic. My dry eyes are the worst SE so far and my Systane drops help with that.

    I'm older than both of you - 70 - but still feel young at heart and vibrant. Any time I felt discouraged, I just pictured my tiny grandson (now 17 months old) - he's my inspiration!

    MJ

  • butterfly1234
    butterfly1234 Member Posts: 2,038
    edited September 2017

    HeartTappersmom.

    My grandchildren ( 5 & 7) keep me young at heart. Very blessed.

    Glad we all have each other for support. I'm using retaine do dry eyes. Will take a look at systane. Be well!

  • JuliaJazz
    JuliaJazz Member Posts: 175
    edited September 2017

    I see my eye doctor soon so I will ask about dry eyes.  I have only been on Anastrozole about a week but so far really not noticing any achiness which was my biggest fear as I already have some aches from arthritis.  Perhaps it is cumulative, but so far, so good.

  • coachvicky
    coachvicky Member Posts: 984
    edited September 2017

    I use the Systane gel at night for dry eyes. Once in, everything is a blur so I wait until Mr Sandman appears.

    Coach Vicky


  • JaneyK12
    JaneyK12 Member Posts: 5
    edited September 2017

    Hi All,

    Have just switched to Arimidex and will use Eagle Pharmacy. If anyone knows how to get hold of a live person from their numbers, please let me know. My doc is faxing it in, but I can't reach a pharmacist or person to confirm that they have it. Please forward any info re processing, enrolling, or expectations if possible.

    Many thanks,

    JaneyK

  • windingshores
    windingshores Member Posts: 160
    edited September 2017

    I don't think there is a distinction between side effect and effects of suppressed estrogen. The effects of suppressed estrogen ARE side effects. Aromatase inhibitors work by getting the estrogen in our bodies below detectable levels. This is not a natural state. Estrogen has many functions in the body, as does aromatase.

    But eliminating estrogen is how these drugs work to stop cancer, so, to me, it is a choice between cancer and side effects. So far, I choose side effects!

    I would just add a little more about exercise. I find, as do others according to my MD, that the first 20 minutes of exercise can be agonizing. By 45 minutes I am feeling better and my joints feel looser and looser the longer I go. I also find that flowing exercise like Tai Chi is better than holding poses. A simple long walk helps tremendously and in the winter I even go to the mall to walk. 

    I am halfway through the 5 years. For the 4th year I may cut my pill in half. The drug insert says that a 20% dose was relatively effective so half might be okay. My oncologist okayed this but I have still been waiting. I am going to call Novartis to ask them why the 2.5 mg dose.

    I take brand name after reacting to three generics. An immediate reaction is NOT a side effect. It is more like an allergy. My immune system does not like a lot of things :)




  • MamaOz
    MamaOz Member Posts: 239
    edited September 2017

    tappermom! I have a 17 mo grandaughter ! She has been my inspiration thru this whole ordeal!!

    I am finally(after hurricane Irma delay) wrapping up my radiation next week and will start on arimidex

    So glad to have you all to chat with, as well as julia! Good to see you here! Hope alls well

    Mamao

  • JuliaJazz
    JuliaJazz Member Posts: 175
    edited September 2017

    Yea, MamaOz.  nice to see you on here!!!

  • castigame
    castigame Member Posts: 336
    edited September 2017

    I will be starting Arimidex after my hystrectomy scheduled for Oct 30th.


  • butterfly1234
    butterfly1234 Member Posts: 2,038
    edited September 2017

    Welcome and we're here for you

  • 2FUN
    2FUN Member Posts: 789
    edited September 2017

    Castigame, good luck o n your durgery. The hysterectomy was the easiest of all of my surgeries.

  • Tappermom383
    Tappermom383 Member Posts: 401
    edited September 2017

    Castingame - when I had my hysterectomy in 2008, I found the Hyster Sisters website. Just like this site, it was a wealth of information for me and there's a great discussion forum there, too. My husband laughed at me for depending on it so much but I learned so much there. One important lesson: It may look on the outside as if not much was done but there are hundreds of internal stitches. I felt really good within days but heeded the warnings to take it easy. Another tip: take a small pillow with you to the hospital to protect your stomach area from the seat belt! I also used a pillow to protect myself from my cats (they wanted to give me so much love!).

    Best of luck to you.

    MJ

  • Tappermom383
    Tappermom383 Member Posts: 401
    edited September 2017

    MamaOz - aren't these little ones the best? Does your granddaughter live close to you? My grandson is in Colorado (I'm in California) so there are no spontaneous visits. We'll be going to my daughter's house for Thanksgiving; I sure wish I could get there before then (my last visit was in July). But between my DH and me, we've made three trips to the East Coast this month. I just don't see any more travel in our plans until Thanksgiving. Thank goodness for Facebook and FaceTime!

    MJ


  • castigame
    castigame Member Posts: 336
    edited October 2017

    Tappermom,

    Thank you for all info along with encouragement. I should check it out. My hubby says something similar about this blog such as "which sister?" because I call ladies here as my sisters.

    I came to realization that total hysterectomy is necessary evil, unavoidable and possibly inevitable. I found a surgeon I like both methodology and bed side mannner. I will be alright except the time I will have to strip for my 86 yr old mother when she finds out what I have been doing for the last nine months.

    Will ask you questions soon


  • 2FUN
    2FUN Member Posts: 789
    edited October 2017

    I had my hysterectomy jan 2017. I had endometrial cancer, so there was no choice. I had the DaVinci (robot assisted ) surgery. My dr was brought into the hospital system because of his expertise. I had 5 small incisions, but I did need to limit my activity other than walking. No more than 5 pound lifting, pushing, pulling etc for 4 weeks. 10 pounds for the next 4 weeks.when you get it done take it easy. Also, hot flashes can be severe, but they will taper down.

  • coachvicky
    coachvicky Member Posts: 984
    edited October 2017

    TapperMom is so right! My GYN said to take it easy. No lifting for nine weeks and afterwards start slowly with a jug of milk. He said it could take six months for all the stitches to dissolve.

    Coach Vicky


  • castigame
    castigame Member Posts: 336
    edited October 2017

    I am crazy for taking Tamox for a few days even though I will start AI very soon.

    So far very little issue. No hot flashes no concentration issue very tolerable joint pain (chemo raised my pain tolerance) yea tiny spotting. Does this mean I could be OK with AI or to be seen as soon as I start? Dang it when will this ordeal end?

  • pupmom
    pupmom Member Posts: 1,032
    edited October 2017

    Don't understand your post. Have you been prescribed Tamoxifen or an Al? Why would you be crazy for taking either? And all the rest of your post is confusing to me as well. ????

  • castigame
    castigame Member Posts: 336
    edited October 2017

    got 1 wk worth of tamox. today is #4 out of 7 Tamox pills I got. I have been taking it evem though I am almost scared of SEs.

    Minor orthopedic surgery on Oct 16th. Tamox has blood clot risk so I am stopping on 5th. Total hyst scheduled for Oct30th. I filled AI script already. I guess I will be popping AI as soon as possible after hyst. I am almost scared about AI SE also. I will taking Arimidex which is a brand name.

    My question is whether I can hope for minimal SE from Arimidex just because I am ok w Tamox SE after 4 daily doses. I understand those are not the same animals.

  • shortcake42
    shortcake42 Member Posts: 14
    edited October 2017

    I am one of the really lucky ones, no SE's that I know of from the anastrazole. My only complaint is the inability to lose weight. I also have COPD and that makes excercise hard. Mostly I walk. Take heart and be brave try the meds, and if they don't work, call you dr and have him change it.

  • pupmom
    pupmom Member Posts: 1,032
    edited October 2017

    Shortcake42, you're really not lucky. Most of us do not have serious SEs. We are the norm. Very sorry about your COPD. That's a tough dx. Hug

  • shortcake42
    shortcake42 Member Posts: 14
    edited October 2017

    I made a post earlier that stated I felt I was lucky. Someone posted that I wasn't lucky. But I AM lucky. Wonderdul family support (two great-grandsons whose faces light up when I walk into a room), 3 loving and protective senior dogs (the youngest is 8). I had breast cancer, but no chemo and no radiation, just have to take one little pill a day. I have no real side effect from the anastrozole, other than a little more rapid aging. I view this as just another pothole on the road of life and force myself to get on with it.I have medical people who answer questions when I ask. Yes, it's scary to think that this horrible disease might come back. I have a friend who has a recurrence after 20 years. She told me she was just going to deal with it and get on with her life, that she was too busy to worry. So, I think I am lucky. I get to get up every morning and and say "I am ALIVE!".