Stopped because of Side effects?

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AshleyN86
AshleyN86 Member Posts: 6
edited August 2018 in Hormonal Therapy - Before, During, and After

Has anyone stopped or continued stopping their hormonal therapy because of side effects? I took tamoxifen for over a year but my doctor took me off because of ovarian cysts and enlarged uterus. I’m now on Zoladex and Letrozole and the side effect are terrible. The bone pain is killing me.

I had no lymph node involvement, complete pathological response from chemotherapy, and a double mastectomy. At this point I’m wondering how much benefit I am getting from the medicine. I’m 32 and at this point feel like I’m 82.

Any advice?

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  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited July 2018

    Yes, quite a few of us have stopped because of side effects. I decided I would rather live while I'm alive.

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited July 2018

    I’m almost 70 and stopped Arimadex and tamoxifen because of bone pain. I’d be in a wheelchair now if I hadn’t.

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  • windingshores
    windingshores Member Posts: 704
    edited July 2018

    My side effects fluctuate. After 4 years I am still hanging in. Existing osteoporosis much worse.  I  have three grown kids and would rather be disabled than dead- and look at risk versus benefit all the time.

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  • Lea7777
    Lea7777 Member Posts: 274
    edited July 2018

    I stopped Letrozole after 3 weeks because I was having pain in my heart for the first time ever in my life and ended up in ER to check for a heart attack. At 32, you must have gone through surgical menopause to be taking an AI such as Letrozole. Give the other 2 AIs a try: Arimidex/Anastrozole, Exemastane/Aromasin. Since you mentioned you took Letrozole, I have suggested these, otherwise I would not suggest an AI for someone who has not gone through menopause.

    Side effects can be very different for different drugs. I lasted only 5 days on Exemastane. Took me a month to recover. On to Letrozle, which was really not bad and nothing like Exemastane, that is until I thought I was having a heart attack.

    Acupuncture has been shown to help with joint pain. 12 weeks brought the pain ranking down by 2 notches on the 1-10 scale for about half the women. Unfortunately acupuncture is usually at your expense.

    I wish you and your 2 small children the best possible outcome, AshleyN86.

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  • AdAstra
    AdAstra Member Posts: 73
    edited July 2018

    This is a good thread, AshleyN86. Thanks for starting it. I’m in a similar place in that I’ve been on tamoxifen for a little over two years. I had a seven week break from it on my onc’s suggestion, but when it came time to go back on it, I didn’t want to and lost the argument with my MO. So, back on it I went and now the SEs are worse. I’m in a discernment process to figure out if I really can deal with this for another 3 - 7 years. QOL issues have become important.

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  • Cpeachymom
    Cpeachymom Member Posts: 518
    edited July 2018

    Ashley- I can sympathize. I agree with Lea that another AI may have less SE and giving it a try is probably better than stopping. Another more extreme option is hysterectomy and back on Tamoxifen, if those SE were tolerable.

    I Hate that we have to make these choices! You might consider what your ER percentage was, mine was 100%, so you bet your bottom that I’m staying on this come hell or high water! Feeling old, looking old, but I’ve got a two year old I want to see grow up.

    Best luck whatever you decide!

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  • PetRescue
    PetRescue Member Posts: 15
    edited August 2018

    tried tamoxifen twice, stopped twice. it caused crippling depression. about to start zoladex and femara. and i know i will have negative side effects, my medications do not play well with others.but i want to know i gave it all a try. if AIs don’t work, oopherectomy here i come. :/

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2018

    AshleyN, I took tamoxifen for 1.5 yrs, walked away from any hormonal therapy for about a year, but thought twice and am now on letrozole. I struggle every day to take my pill. The looming thought of recurrence and mets keeps me taking it, at least for now. My SEs were worse on tamoxifen than on letrozole, but I too am fatigued, achy, and just generally feeling older than my years. I do my best to stay positive and try to manage SEs through diet and other lifestyle choices, but it's hard sometimes. So sorry you have to go through this. Good luck to you and thanks for starting this thread.

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  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited August 2018

    Ashley - I have some of the same feelings. I fear recurrence, but I also wonder about true risk with complete response and BMX. I have yet to find any studies that address those variables.

    I tried Tamoxifen for 3 months and had horrible muscle spasms in my legs, continuous wet vaginal discharge, and worsening mental and emotional state. It took a really long time for all of that to subside - maybe 6 weeks or more.

    I subsequently ended up with a thickened endometrium and a septated ovarian cyst. While I was having that followed and planning a D&C - I got my period. That was 18 months after chemo stopped them. So I'm not a candidate for the AI's. Wasn't sure how I felt about those anyway with osteopenia.

    My plan is to try a reduced dose of Tamoxifen - like 5 mg to start - and try to increase it if that goes okay. If I can't tolerate it at all then I'll have my answer. But first I have to get some other problems figured out - CT of abdomen for "nodule" and final resolution of uterus and ovary (haven't had another period).


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  • Denise-G
    Denise-G Member Posts: 1,777
    edited August 2018

    Have you gone through menopause? I've been on Arimidex for 6 years and my sister has been on it for 3 years.

    We had terrible joint pain for the first couple of years, then it subsided tremendously. The only time we get severe joint

    or bone pain now is in the winter (cold climate). Like clockwork, we can predict a snowstorm coming in.

    For us, it has been worth it to stay the course and know we are fighting cancer every day.

    Everyone is different.

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  • Lula73
    Lula73 Member Posts: 1,824
    edited August 2018

    I do hope we all experience significant relief of joint pain from AIs within the first few years if taking it!

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  • Artista964
    Artista964 Member Posts: 530
    edited August 2018

    regular claritin got rid of my bone pain.

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