CALLING ALL SISTERS!!!! NEED ADVICE...........

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faithfulheart
faithfulheart Member Posts: 544
edited June 2018 in Stage III Breast Cancer

Hi girls how is everyone!!!!!!!!

its been a while from my last post....I am asking for some advice here... Im going on 9 years NED Praise God!!!!

I have been on Tamoxifen up till about 2 months ago where i felt a break in the action was really needed do to lack of energy and lots of depression.. I have no ovaries so who knows what the cause of it all is.. However my liver enzymes keep fluctuating ... I did develop some fatty liver disease during chemo and just over the years which can happen. My question is....... My MO said I could be done with all hormonal blockers now if i felt my quality of life was being really compromised... or go on femara which i know has similar side effects but being post menopause is actually probably a better route for me anyway>>> I feel good and i am going back to work!! I need to drop some weight as that can contribute to fatty liver.... get my numbers back down then re test in 30 days.. if numbers are stable then i need to decide weather to go back on drugs or stay drug free let go and let God!!!! I really don't want my cancer back but i feel really much better off of them after 8 years ...Advise Please!!! What would you do.. I know some of my sisters that have been on here longer may need to chime in as this is probably not effecting Newbies yet and might never!!


Love and blessings to all of you on this journey !!!

Hope to the newbies out there so much hope look at me!!!!!!!

lots of love

steph

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  • IAmElaine
    IAmElaine Member Posts: 87
    edited February 2018

    Steph, I was premeno before chemo threw me into permanent menopause. I took tamoxifen for about the first year and then switched to Arimidex. Took that for about five years and my onc switched me to Femara. I will be 14 years out in a couple of days and I will continue to take the AI indefinitely. This was not a hard decision for me. I know that if I stop taking it and the cancer comes back, I will forever kick myself around the block. I do not want to have any treatment regrets.

    Good luck with your decision making process.

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  • sugarplum
    sugarplum Member Posts: 318
    edited February 2018

    Hi Steph - this decision was a no-brainer for me as well: I've been on Arimidex from the get-go (2006) and went through several oncologists in order to find one who supports me in continuing it. My bones deteriorated for a few years but now seem to be stable (was osteopenic even before diagnosis). I am having heart issues but the cardiologist seems to think it's from the red devil chemo I got, rather than the AI.

    We all have to roll the dice at some point or other! My best to you....Julie

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  • faithfulheart
    faithfulheart Member Posts: 544
    edited February 2018

    thank you girls !!! Do you think taking a 3 month break in the big picture is an overall bad

    Thing? I do feel like I'm flying without a net here!!!

    I could not handle not knowing I did not give it my all!!

    XOXO

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  • IAmElaine
    IAmElaine Member Posts: 87
    edited February 2018

    Steph, over the years I have taken one month breaks in the course of a year, especially if I am traveling. My onc is completely fine with it.

    There was a study being done in one of the European countries a few years ago in which the participants would take the AI for nine months and be off of it for three. I ran that by my onc but he was not on board for that. He felt like that was too long to be without the therapeutic level of the AI. The theory of the study was that it would make our bodies more sensitive to the AI if we allowed it to be clear of it for a while.

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  • wallan
    wallan Member Posts: 1,275
    edited March 2018

    You can take AI' s indefinitely??


    wallan

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  • Kathleen26
    Kathleen26 Member Posts: 210
    edited March 2018

    If I could I would stay on Tamoxifen forever. For as little response as I got from chemo, I have to think the Tamoxifen is a big reason I am still NED today. I'm still worried enough about recurrence that I would not choose to be taking nothing if I could get a doctor to prescribe something. I don't know if I would say the same about the AI's, which I found hard to tolerate. I don't have to face that yet, but my current MO told me she would not prescribe after I had been either on an AI or Tamoxifen for a combination of 10 years. I still have a few years to get to that point, but my plan is to find a new MO if this one doesn't allow me to say on Tamoxifen itself for at least 10 years.

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  • IAmElaine
    IAmElaine Member Posts: 87
    edited March 2018

    Wallen, when I say "indefinitely" I mean that to say I don't see an end in sight with it. My onc and I both believe it is doing it's job and I have very little trouble with side effects from it. As long as my bone density holds up I want to continue on with it. As the saying goes, "If it ain't broke, don't fix it." So, that is where I am right now in my decision making.

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  • wallan
    wallan Member Posts: 1,275
    edited March 2018

    ah... I understand. I was hoping I could take mine indefinitely if it comes to that.


    My MO says 5 years.

    wallan

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  • pinkribbon43
    pinkribbon43 Member Posts: 1
    edited June 2018

    I have been taking Arimidex/anastrozole (sp) since 2004. My oncologist at the time, said she would keep me on it as long as it seemed effective then switch me to another med. She feels I have a sleeping cell. I have had to switch oncologists recently due to my first doctor retiring. Not sure how long she will keep me on the med. I have no problems from it other than an occasional hot flash. I do have achy muscles at times, but we aren't sure what causes that. I take other meds that could also cause that problem.

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  • Moderators
    Moderators Member Posts: 25,912
    edited June 2018

    Pinkribbon -- welcome to Breastcancer.org!

    While you may get some responses here on this thread, it's been a little quiet since March. You may want to check out the thread For Arimidex (Anastrozole) Users - Past, Present, and Ongoing for a very active and helpful discussion about this medication. Someone there is sure to help answer you questions!

    We hope this helps and we look forward to hearing more from you soon!

    --The Mods

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