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Who took any kind of hormone drug with no problems?

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I am trying to decide whether to agree to hormone therapy - I won't take Tamoxifen, and am in menopause, so expect I'd be offered something else.

I am wondering if anyone took any drugs and found them ok - NO weight gain, NO depression, NO broken bones, NO side effects that ruined their quality of life - like sleeplessness, extreme fatigue etc.

Did anyone find that they took the drug and life went on as usual?

PLEASE NOTE: I am not wanting any comments that try to influence me due to scare tactics. I have done radiation and chemotherapy in the past and that hasn't worked, so please no comments along the lines of "if you don't take the drugs ..." None of these treatments seem to have any kind of major guarantee to help, but come with a vast list of potential health issues and side effects.

I know everyone is different, but Im trying to determine if a vast amount of women say they had no troubles, or if that's rare.


Many thanks in advance.

Comments

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited July 2021
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    Try this thread:

    Topic: Doing Well on Aromatase Inhibitors (AIs) https://community.breastcancer.org/forum/78/topics...


  • Dixie02
    Dixie02 Member Posts: 74
    edited July 2021
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    My tumor was triple negative, with 2% estrogen. Because of that 2%, my doctor has started me on hormone therapy. So far I've been given Zoladex, and one months prescription of letrozole. Tonight I picked up a prescription of tamoxifen.

    I can't lose weight, at work I sweat like a person who's just run a marathon, and now he wants me to start a third prescription. I'm seriously considering taking my chances without any of them. That's how I found this thread, because of doing some research into personal experiences and advice. My immediate side effects have been tiny compared to some of the possible long term ones. Prevent cancer, but have a stroke.

    Anyway, I don't have any advice to offer, I just wanted to commiserate with you.

  • orangeflower
    orangeflower Member Posts: 92
    edited July 2021
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    Hi there. I just wanted to point out that people who are doing well are less likely to post here because they're not having problems and may have moved on.

    Also just remember that if you end up unable to tolerate hormonal therapy, you can always stop. Lots of people do well on the drugs.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,747
    edited July 2021
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    My circumstances are very different from yours but I have been on all of the AI’s, at different times,for almost ten years.

    -No weight gain

    - I sleep like a log

    - Not depressed (beyond the usual stage IV funk)

    - Ruined QOL? Hardly. Save for a brief medical leave, I worked at a job I loved and just retired a few weeks ago. My life has changed little since before my dx and no one looking at me would ever believe I have stage IV bc.

    Yes, I do have some joint pain in my hands and knees. I manage with OTC pain killers and cannabis and just go on my merry way. At stage IV I understand that AI’s may be the only thing standing between myself and progression so I am extremely motivated to take them (currently on Exemestane) but it’s had little impact on my QOL. Take care.

  • 2019whatayear
    2019whatayear Member Posts: 464
    edited July 2021
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    I've been taking letrozole since 3/2020. I have not had problems.

  • bcincolorado
    bcincolorado Member Posts: 4,696
    edited July 2021
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    I was on tamoxifen and letrozole both for close to 10 years. Only bad side effect was some bone loss that was caught with monitoring by my oncologist. Had about 4 rounds of Prolia shots and doubled up on Calcium. Personally felt like like pills were small and easy to take and keep cancer from biting me again.

  • muska
    muska Member Posts: 224
    edited July 2021
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    I am in my 8th year of anastrozole. Will stay on it for as long as possible. No significant side effects


  • kathabus
    kathabus Member Posts: 45
    edited July 2021
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    Everyone IS different....but I am on letrozole after a complete hysterectomy. No weight gain, depression or sleeping problems. Nothing major at all.

  • Celebris466
    Celebris466 Member Posts: 9
    edited July 2021
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    Can I just say for those of you posting your positive experiences. YOU ROCK! What a blessing you are giving to those starting them. So great to hear good things. I hope more people post good things. I was on Tamoxifen only for a short time and honestly had not serious side effects. But my cancer had recurred so I stop for surgery. But again, wasn't on it long enough (only a few months) for it to have any impact I would guess. I actually kind of felt better emotionally lol. I will start a AI soon and a little nervous. But we can only try.

  • elainetherese
    elainetherese Member Posts: 1,625
    edited July 2021
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    "No problems" is subjective. I've been on ovulation suppression (Zoladex) + aromatase inhibitor (AI) for over six years. I had hot flashes at first, but they've faded with time. I was moody at first, and then my oncologist prescribed a low dose of Celexa, and I've been fine since. My bone density deteriorated until I had full-blown osteoporosis. But, that was "fixed" by Prolia. I guess you'd say I've had problems, but I found that they could be addressed to my satisfaction. Best of luck, figuring out what is best for you.

  • maureen1
    maureen1 Member Posts: 87
    edited July 2021
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    Everyone is different as is our breast cancer... for what its worth, I could not tolerate Aromasin - I had bone pain, joint pain, fatigue, and sleeplessness. My MO switched me to Tamoxifen. I've been om it for 8 years with minimal side effects so I will continue on it indefinitely as long as it keeps my BC at bay.. Good luck....

  • catsme
    catsme Member Posts: 17
    edited July 2021
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    I've been on an AI since 2017. No problems. I do have osteoporosis, but had that before BC. Prolia, calcium and additional strength training has improved the osteoporosis. I sleep well, have a healthy appetite, and have lost some weight, on purpose 😁, all while taking the AI.



  • startnew12212
    startnew12212 Member Posts: 45
    edited July 2021
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    I am on anastrozole plus getting Lupron injections. I have hot flashes and that's it!

  • star2017
    star2017 Member Posts: 370
    edited July 2021
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    I didnt notice any side effects on tamoxifen. On anastrazole, the only side effect I noticed was a little tenderness at both elbows occasionally. It wasn't a constant feeling. I've just started fulvestrant, and so far no issues.

  • mavericksmom
    mavericksmom Member Posts: 1,119
    edited July 2021
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    My sister has been on an AI for a year and a half and tells me she has had no side effects.

    I have had breast cancer twice, IDC in 2003, ILC in 2019. I refused tamoxifen first time. I was on Letrozole for six months the second time, it caused my cholesterol levels to go through the roof. They went back to normal after stopping Letrozole. I never liked nor wanted anyone messing with my hormones so I am glad to be off them.

    It doesn't matter how many people had no effect or how many didn't. Don't make your choice based on that. Base your decision on YOUR cancer, you stage, grade, and age. Instead of thinking in terms or "will I get side effects" ask, "will the AI benefit me more than harm me." If the answer is yes, try whatever your oncologist advises. Many side effects can be over-come or at least minimalized with other medication or increased exercise. Your oncologist will help you. Many women try different AIs until they find one that works for them.

    It is absolutely the hardest decision I had dealing with breast cancer, but I feel comfortable with my decision and my sister feels the same about hers! My family has a high incidence of cancer, mom, two of three sisters, a cousin and myself, but is not from any genetic defect that they know of. None of my grown nieces or nephews or my aunts or uncles have had breast cancer. I assume I was exposed to something as a child. Since I was refused a double mastectomy, I could get it a third time in my "good" breast......or not.

    Best of luck with whatever decision you make!


  • Danagal
    Danagal Member Posts: 1
    edited July 2021
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    Hello, I tried both anastozole and letrozole first. I had really bad hand and feet pain (especially in the morning) and trouble sleeping. I normally have a fairly high tolerance for pain, but it was too much for me. I just started on Tomoxifan and the pains are decreasing. It’s only been 3 days. Diagnosed February of last year. Stage II cancer with 2 lymph nodes involved. Had a lumpectomy, chemo and radiation. I am determined to do what it takes to hopavoid a reoccurrence. Keep advocating for yourself.

  • Emily21
    Emily21 Member Posts: 67
    edited July 2021
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    I'm on day 7 of anastrozole, all OK so far, I'm not sure of the benefit as I'm an oncotype 51 girl but I'll do what I'm told for now. Good luck with your choice.

  • ruthbru
    ruthbru Member Posts: 46,926
    edited July 2021
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    I did chemo, radiation & 5 years of Arimidex. My life went on as usual. No weight gain, no depression, no broken bones, no fatigue, no more sleeplessness than usual (I am a rotten sleeper but it wasn't made worse by the pill). In the beginning I was a little achy & hot flashy (not major but noticeable), I'd say it took about 6 months for my body to adjust and feel normal. So if you do try it, give it some time. There were some things I did that helped make it work for me.

    *one of my friends who was already on Arimidex said, 'Keep moving, keep moving, keep moving." So I did. I made sure I didn't sit too long, got up & moved around etc. which helped with achiness.

    * I got rid of turtlenecks, bought some zippered sweatshirts etc. (so I could take them off quick if I got hot), dressed in more layers & bought some fans.

    *I exercise religiously (because exercise is the biggest non-medical thing we can do to reduce the risk of recurrence). A good side effect of weight bearing exercise is that it builds bones, so it's important to exercise when on an anti-hormonal to keep the bones strong. Exercise actually helps prevent or lesson fatigue.

    * I also made sure to eat/drink some dairy every day, took calcium plus vitamin D, and daily ate a serving of dried plums (ie prunes), prunes actually build bones!

    *I played around with the time of day I took it. I found if I took it at night, if I did have some hot flashes, I slept through them (they weren't severe, as that wouldn't have worked had they been bad).

    * I also found being busy; making plans, doing fun and engaging things kept my mind busy so I didn't have time to think about what I had been through or how I was feeling physically that much.

    *For what it's worth, I have four pretty close friends who took an AI, each for 5 years. None of us had more than minor problems with it, so I think testimonials are slanted toward those who do have problems. Which is natural, you talk about things if you are having issues, otherwise you just go out and live your life.


  • typhoon
    typhoon Member Posts: 59
    edited July 2021
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    I've been taking anastrozole for about 6 months, without any noticeable side effects, and it's had no impact on my normal, pretty active and busy, daily life.

  • jennyjo20
    jennyjo20 Member Posts: 28
    edited July 2021
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    Ruthbru,

    I think all of your advice is SPOT ON and I appreciate it. I made a lot of changes to my lifestyle, mostly involving diet and exercise, right when I was diagnosed. It's impossible to say for sure, but I highly suspect that it has helped me tolerate ovarian suppression and anastrazole far better than I had anticipated. I'm about a year into endocrine therapy and I feel really healthy. I haven't gained any weight, my hot flashes are less frequent and severe, and I have mild aching in my hands when I wake up but not any other time of the day. I do have a little harder time falling and staying asleep, but I'm learning to manage that as well. I know these treatments aren't something that any of us want to be on, but I would consider myself one of the fortunate women who is tolerating it pretty well. I do try to stay very active, eat a whole-food plant-based diet, drink tons of water, take a multivitamin, omegas, vit-D, and calcium, prioritize sleep, and do my best to minimize stress. I rarely post on here, but read many of the threads. But I just wanted to offer hope to anyone afraid to start endocrine therapy that it might not be too terrible. I appreciate everyone on these boards for sharing their experiences and support.

  • ruthbru
    ruthbru Member Posts: 46,926
    edited July 2021
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    If anyone wants some support in the exercise department, check out the Let's Post our Daily Exercise in the Working on Your Fitness Forum. It's always in the Active Topics (because we are always active Loopy). A great group of ladies in all stages of treatment and beyond, all fitness levels too. It is a really fun & inspiring place to hang out.

  • momwriter
    momwriter Member Posts: 276
    edited February 2022
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    These stories are so great! After 8 years on tamoxifen, and a break to see how it felt to be "normal", I just started anastrozole. It's very encouraging to see these positive reports. I did well on Tamoxifen (was hard to know what was tam and what was chemo induced menopause) but then last spring I started feeling a tingling in fingers and feet (maybe neuropathy?) and requested a break. Those feelings went away with the break. My MO decided I should try an AI. So after 6 months break, here it is Day 3. I took a Claritin with it as some people recommend doing. So far no side effects but we will see. I will probably phase out Claritin soon. I also will try to keep to a very low cholesterol diet since I do have naturally high cholesterol and want to avoid a statin.

  • mle42
    mle42 Member Posts: 124
    edited February 2022
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    I'm on day 6 of anastrazole, so still very early, but zero side effects so far!

    I love the "Doing Well on Aromatase Inhibitors" thread that Beesie linked up top.

  • salamandra
    salamandra Member Posts: 736
    edited February 2022
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    FWIW, I had intolerable fatigue on tamoxifen, but switched to toremifene and it has been just fine! I wouldn't say zero side effects (occasional hot/cold flashes, irregular periods and possible accelerated perimenopause, needing more adjustments on some psych meds to accommodate hormonal changes), but completely tolerable. I stuck out tamoxifen for about 8 months, IIRC, and now it's been over 2 years on the toremifene. My initial plan was hormone treatment for 5 years but I will ask my doc to stay on it for as long as the side effects stay this level.

  • janiehs
    janiehs Member Posts: 36
    edited February 2022
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    I have been on anastrozole since July 2020. I have gained no weight ( I do intermittent fasting though which I did not do before so don’t know if that’s why). I have hot flashes, insomnia and some joint pain that comes and goes. Before June 2020 I had hot flashes, insomnia, and joint pain ( menopause has not been kind to me). So honestly, I have to say that I feel absolutely no different now than I did 2 years ago. I have an fairly aggressive cancer and a terrible family history when it comes to BC - my MO is going to have to pry the bottle out of my tightly gripped fist to get me off of it.