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Life on aromasin

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  • kale437
    kale437 Member Posts: 7
    edited January 2020
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    i am exactly the same on aromasin! the shoulder aginy and my tailbone hurts so bad BUT i wasnt willing to risk the side effects of tamoxafin. so hard to know whats best

  • kale437
    kale437 Member Posts: 7
    edited January 2020
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    i am exactly the same on aromasin! the shoulder aginy and my tailbone hurts so bad BUT i wasnt willing to risk the side effects of tamoxafin. so hard to know whats best

  • kale437
    kale437 Member Posts: 7
    edited January 2020
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    i am exactly the same on aromasin! the shoulder aginy and my tailbone hurts so bad BUT i wasnt willing to risk the side effects of tamoxafin. so hard to know whats best

  • jaybird627
    jaybird627 Member Posts: 1,227
    edited January 2020
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    I take Anastrozole. I did start on Exemestane and switched because it was way more expensive, a different Tier with my insurance. I think I did have joint pain with it but I was coming of a year of BMX, chemo and rads and moving to another state so the pain could have been from all of that.

    I think I did have some pain when I started Anastrozole but I take so many herbs and vitamins now that I rarely have joint pain. It may be all in my head but I'm going to continue to take them. My knees hurt when I sit on the sofa with them bent but that's about the only time. I'm 59 and feel old when I get up in the morning but as I move through my day I usually feel good/energetic.

    I'm on Anastrozole for 8 1/2 more years so I kind of have to suck up any joint pain that I do have. I take it at night.

    Good luck!

    Jaybird ~

  • kale437
    kale437 Member Posts: 7
    edited January 2020
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    jaybird would you be able to tell me what vitamins and herbs you take that help the pain? ❤️ thank you

  • jaybird627
    jaybird627 Member Posts: 1,227
    edited January 2020
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    Hi Kale,


    I take a LOT of stuff but for joint care I take:

    New Chapter Bone Strength (calcium +)

    Himalaya brand Joint Care (herb blend)

    Gaia Turmeric Supreme extra strength

    Wobenzym N joint health by Garden of Life

    HTH


    Jaybird ~


  • humblepeace
    humblepeace Member Posts: 85
    edited April 2020
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    Hi Everyone,

    I pray everyone is well during this very trying time. I had to come here for insight and experiences of others as I called my breast surgeon's office today and was told that I may not be able to get an appointment or a referral for an ultrasound due to covid-19. I'm waiting to hear back tomorrow.
    So, November 2019 five months ago I did my yearly mammogram in my left breast (right side mastectomy 2017). It was discovered by ultrasound that my left breast had a fibroadenoma and was found to be "more than likely benign" and I should return in six months for another ultrasound. Well, I made appointment to return in early March 2020 which was also cancelled. So, a few days ago I began to experience a bit of soreness/pain in this breast. I almost ignored it, but I remembered...wait you're in menopause due a total hysterectomy June 2018. The pain is somewhat similar to what I used to experience during periods, but a bit more noticeable. Today I was experiencing more sharp pain and tenderness. I have also switched to aromasin in the last two months which has been no picnic. I thought Arimidex was bad, but this is it's naughty cousin.

    Has anyone ever experienced breast pain due to AI's?

    Thanks everyone for your insight.

    Stay safe in whichever state you live.

    Humblepeace

  • ginger48
    ginger48 Member Posts: 1,437
    edited April 2020
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    Hi Humble-

    I have not had that experience but hopefully someone will come along soon with some advice.

    If it was me, I would call the dr to give them information about these new symptoms; it seems different than calling about a re-screen. I would insist on talking to the doctor about your concerns.

    Good luck.

  • faith-840
    faith-840 Member Posts: 926
    edited April 2020
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    Hi Humblepeace, I am on a different AI, Letrozole but I think they all have similar side effects. I’m nearly 80 years old and get lots of breast pain in my one remaining breast. It’s worse if I have too much caffeine. I would certainly call your doctor and not ignore this if it’s a new symptom but it may be nothing to worry about until you can get an ultrasound.

    It’s awful how this virus has turned our world upside down and put our lives on hold even when serious things are happening to us. Good luck, I pray you have nothing to worry about.

    Faith (in the future).

  • dkk
    dkk Member Posts: 47
    edited July 2020
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    Hello all! I am in the same boat as many of you. I was on Anastrozole for 2 yrs and did fine, but gradually occurred knee pain so bad I could hardly walk. I changed to Extemestane and have been on it for 2 months and the knee pain is a little better but not much. I am 65, but like many of you, I feel like I am a 90 yr old woman. Some days are not as bad as others. I do take Vit D, Calcium and Tumeric

    I would like any suggestions on relieving the pain on bad days. Tylenol does not help much. I do not like to take strong pain meds. I would appreciate any tips on what helps you deal with this pain

    Thank you ladies 😍

  • stacy91965
    stacy91965 Member Posts: 18
    edited June 2021
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    new to this thread. I was taking Arimidex, but only a short time because the SE were quite bad, joint pain and muscle pain (my thighs felt like i had done 100 squats, figured if i felt like that i should at least look like i had done 100 squats! LOL) i could not walk 15 minutes without tears in my eyes due to pain. The fatigue was pretty significant. So, I am on "holiday" for 3 weeks and will start Aromasin. I am really hoping the SE are less.

    anyone have advice? i don't want to predict SE, but i kinda want to know what i am in for.

    Thanks in advance

  • jkl2017
    jkl2017 Member Posts: 279
    edited June 2021
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    Stacy, I also had significant fatigue and extreme muscle pain in my thighs while on Arimidex. Both problems disappeared within a week or two after I stopped taking it. I began taking Aromasin a month later and neither of those SEs have returned. Hopefully you'll have a similar experience. Good luck!


  • KateHanni
    KateHanni Member Posts: 70
    edited July 2021
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    Yes I have had breast pain with anastrozole (arimidex) and exemestane (aromasin) haven't tried letrozole yet or tamoxifen.



  • KateHanni
    KateHanni Member Posts: 70
    edited July 2021
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    Please keep us updated. I began aromasin one month ago and did not have the terrible side effects until about 3.5 weeks of taking it. It was so bad I have to stop. Headaches and pain in liver area in addition to critical mass depression which I've never had before...

  • dockmur
    dockmur Member Posts: 2
    edited July 2021
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    Hi KateHanni. I had been on Anastrozole for 5 months. I too experienced depression, which I had never had before. I felt better temporarily with exercise but getting myself up and going was no easy feat. I also experienced tingling and numbness in my hands. I didn't know if this was from my workouts or maybe beginning lymphedema? I'd go off the meds for a week at a time and all symptoms went away, including my lethargic state so I knew it was the meds. I mentioned the depression to my Oncologist and that I felt I was a different person on the meds. She took me off pronto. If it was just muscle and joint issues she would have encouraged me to try another aromatase inhibitor but since they all worked by the same mechanism she didn't think this was a good Idea. The depression was a red flag. I have been on Tamoxifen for two weeks and take low dose aspirin to prevent possible clotting issues. It's a little early to tell but so far so good. All meds have side effects we need to weigh the pros and cons. Chemically induced depression pulls the rug and the fight out from under us. Best of luck to you!

  • stephilosphy00
    stephilosphy00 Member Posts: 161
    edited July 2021
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    Hi guys, I've been having blurry vision of one of my eyes for 4-5 days, I got it checked today and found out it's macular edema, fluid built up in the eye and caused impaired central vision. I have been on Aromasin for exactly 4 years and I think it's time to switch to Letrozole or Anastrozole. Any of you guys developed eye issues when on AIs? Thank you for sharing your experience!

  • lillyishere
    lillyishere Member Posts: 770
    edited January 2022
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    Ladies, my MO recommended me to take exemestane to replace letrozole. Any tips with exemestane?

  • jkl2017
    jkl2017 Member Posts: 279
    edited February 2022
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    Lilly, I have found exemestane fairly easy to take. I initially had a lot of hot flashes, but they are fairly rare now. My MO wants me to stay on it for at least two more years and I have no problem doing that. I would suggest that you try it; you can always try something else if the SEs are too severe. Good luck with whatever you decide.


  • lillyishere
    lillyishere Member Posts: 770
    edited February 2022
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    Thank you my fellow ILC sister. I am to scared not to take it :)

  • zephyr2309
    zephyr2309 Member Posts: 2
    edited February 2022
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    Hello - I hope my comment/inquiry is relevant. I was diagnosed with ILC in September 2021; lumpectomy in October 2021, finished radiation late December 2021. No node involvement; clean margins. I was first placed on Arimidex and had to stop within 11 days. I sent a message to my cardiologist who replied Arimidex is "associated" with faast heart rate. While I was sitting at my desk contacting my MedOnc, my heart rate was 100. I felt lousy all week (and I had my first Zometa infusion that Tuesday).. MedOnc told me to stop. I now have a script for Aromasin and frankly starting at the bottle, having reviewed all possible side effects (I like to be prepared!). I had one friend who took Arimidex with no issues (very happy for her!) and another friend took Aromasin with no side effects. Hoping for the same outcome. My Oncotype score was 14; the distant recurrence risk at 9 years with AI and/or Tamoxifen is 4%. I am grateful to be at low risk. Any ideas on how to mitigate possible side effects? Many thanks.

  • lillyishere
    lillyishere Member Posts: 770
    edited February 2022
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    Zephyr230, I'm sorry to see you in this club but you'll meet some wonderful members here.

    How large was ILC? As you can see from my signature, I had ILC too. First, Zometa can have SE for the first couple of days or more and the first infusion is the most difficult one. How often and how many years will you be in Zometa? Second, I have been using Letrozole for over 2 years and I am in a month's break to switch to Aromasin. I was told from my MO that 50% of cases Aromasin cases have less SE. I guess it is kind of llotery. One thing I read is that it should be taken after a meal. My personal theory is taking the meds in the morning or lunch to allow the body to digest and flush the remaining medication during the day. At nighttime, we don't drink water and move around and the medication stays longer in the body.

  • elainetherese
    elainetherese Member Posts: 1,627
    edited February 2022
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    I've been on Aromasin + Zoladex for 7 years. I would advise taking after a meal and before 3:00 pm.

  • lillyishere
    lillyishere Member Posts: 770
    edited February 2022
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    Thank you so much ElaineTherese

  • zephyr2309
    zephyr2309 Member Posts: 2
    edited February 2022
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    Hello - thanks for your reply. Stage 1A; tumor was 1.5 CM (everything started with a 3D mammogram last September); clean margins, no spread to nodes. I have a friend who took Aromasin and had no issues, and the package insert said to take after a meal. I'm an early riser so I would take it after breakfast which I always eat.

  • twolutzjo
    twolutzjo Member Posts: 18
    edited February 2022
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    Hi Everyone,

    Am popping in here to say I was on Letrozole for about 2 years. Started out well with minimum SE. About 21 months into Letrozole I was miserable. Hurt everywhere and really got depressed (never have been before). My MO is the best. Told her and she immediately had me stop Letrozole and said within 2 weeks I'd know if it was the culprit. OMG I felt like a new woman. My MO then put me on Aromasin. I have been on it about 4 months and am doing great. Some small aches and pain but I feel like my old normal self (if one can ever be normal after BC). I am so hoping this lasts. Bone density got worse and now take the Prolia shot every 6 months. I am 76 years old and was diagnosed in June 2019 with Paget's Disease. In reading the different threads on these pills I realize the SE are different for everyone and no one knows how the pill will affect their body. Just have to think positive and keep the lines of communication open with your MO.

  • lillyishere
    lillyishere Member Posts: 770
    edited February 2022
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    Thank you twolutzjo. I am going to start Aromasin in 2 weeks after a month's break from letrozole and you are giving me hope. I didn't even know how miserable I was in letrozole until I stopped it. Thank you.

  • twolutzjo
    twolutzjo Member Posts: 18
    edited February 2022
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    LillyIsHere, I am so happy that I have given you HOPE. I believe there is always HOPE. I hear you, though, I didn't know how awful I felt until I stopped the Letrozole. And what went through my mind was " this is not the quality of life I want." Was so glad I reached out to my MO. Good luck and I am feeling great!

  • mikamika
    mikamika Member Posts: 242
    edited February 2022
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    Lilly,

    Please keep us updated about your experience with Aromasin. I feel like I will give it a try too. My experience with the brand name Arimidex is not so bad in terms of pain. But I am definitely not the person I used to be before I started this drug. I would have tried Aromasin long time ago, but my MO did not know what I could expect from the steroid AI.


  • lillyishere
    lillyishere Member Posts: 770
    edited February 2022
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    MikaMika, life after these powerful medications is not the same as before. I can't even make myself read the SE of Aromasin but I hope it will be better. It is hope that keeps us going.

    How are you doing?

  • mikamika
    mikamika Member Posts: 242
    edited February 2022
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    Yes, so true about hope...

    In general, I am fine. How are you, Lilly?


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