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Any POSITIVE stories about AIs or Tamoxifen?

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I am seeing a lot of posts seem to indicate that AIs are frequently stopped due to side effects that are not bearable. I am on Tamoxifen and expect my onco to recommend me changing to an AI. I have gained at least 10 lbs since starting T just shy of 2 years ago. I do have joint pain (specific to the hip area) but am sure that it is due to the extra weight.

Switching to an AI freaks me out when I read about joint/bone pain, fatigue and hair loss. Has anyone had a good experience on AIs? Or a better experience on one over another? What about weight gain or vaginal dryness? These are problematic or me know and wonder if an AI may be better than T.

Thanks!

Comments

  • alicebastable
    alicebastable Member Posts: 1,939
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    The people with no side effects probably don't come to BCO precisely because they don't have any issues.

  • muska
    muska Member Posts: 224
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    Hi Onlygirlof5,

    I am in my 10th year of Anastrozole. No major side effects. Keep in mind that those of us who feel OK on hormonal therapy don’t post often.

    Good luck with your treatments

  • onlygirlof5
    onlygirlof5 Member Posts: 27
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    Of course! Thank you for that reminder. I haven't been active here for a while as I considered myself in that boat as well. The weight gain continues so I started searching for answers.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,747
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    Yes, very important to remember that those with minimal/no issues tend not to post. I have taken all the AI’s over the course of11+ years. I keep switching hoping for no se’s but they all affect me in a similar way. However, I manage the se’s and live a fairly normal life. Currently taking Exemestane and enjoying the best se of all. After 11 years at stage IV, I am still alive and kicking!

  • ruthbru
    ruthbru Member Posts: 46,929
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    I was on Arimidex for 5 years. Other than being a little achy & hot flashy for a couple of months while my body adjusted, I had no problems. I didn't gain (or loss) any weight, my hair was fine, energy level was fine etc. etc. I did (and still do) exercise every day (motion is lotion for the joints) & kept busy doing interesting and engaging things, so I didn't have that much time to think about it. I, myself, was very grateful that there was something I could take after the initial treatments to really reduce the chance of recurrence.

  • 2sdbc
    2sdbc Member Posts: 10
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    As someone about to meet with the oncologist about starting AIs, this has been very reassuring. Thanks.

  • maggiehopley
    maggiehopley Member Posts: 103
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    I've only been on anastrozole for 3 months but so far I have had no side effects. I do have vaginal dryness but that is a pre-existing condition for me and the AI has not made it worse.

  • jh40
    jh40 Member Posts: 140
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    Thank goodness for this post. I hope some more ladies chime in with positive experiences.

  • threetree
    threetree Member Posts: 1,271
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    Ruthbru - Love the "motion is lotion for the joints" thing. I'd never heard that one before.

  • edwards750
    edwards750 Member Posts: 1,568
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    I initially took Arimidex but when I developed osteoporosis my MO switched me to Tamoxifen. Arimidex attacks the bones. I took Tamoxifen for 5 years and had a few side effects like night sweats and difficulty concentrating at times but other than that no problems. Tamoxifen can cause blood clots and since I had one in my leg at age 16 my MO told me I could quit taking it after 5 years. However, I did have 2 children which apparently lessens the risk.

    I was determined to take whatever I had to to avoid a recurrence and as of August this year I will be 11 years out.

    Good luck.

    Diane

  • scaredme
    scaredme Member Posts: 65
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    I have been on Letrozole for 1.5 years and am doing fine. I did have some weight gain (11 pounds), but have recently been able to take off 8 with careful dieting and exercise, so it can be done.

    I do have some aches and pains in my joints, but am still walking 3 miles a day and feeling relatively well. I am getting Lupron shots every 3 months and taking Verzenio, which may also be throwing their own side effects in.



  • ruthbru
    ruthbru Member Posts: 46,929
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    Weight bearing exercise builds bones, a serving of dried plums (prunes) a day also builds bones, take Vitamin D (plus vitamin K.....get a supplement with both as they work together.......I use Viactiv, with is a chew you can get off the shelf, you are supposed to eat 2 a day but I do 3 (with my doctor's ok), Magnesium also it good for the bones as are dairy products, fish & green leafy vegetables. Have a bone density scan before starting (DEXA) so you have a baseline & another every 2 years to keep close track of your bone health. I think because I did all of the above (and was lucky), my bones held up fine.

  • beeline
    beeline Member Posts: 193
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    I’ve been on letrozole for 3 years and it’s been fine. I did a year oftamoxifen before that which I didn’t love, but I was also thrown into early menopause by chemo so it’s hard to know how much was the tamox. I’m definitely a little creakier and stiffer than I was before, but no major complaints. I used to remind myself every time I took one that it was the magic pill keeping me alive. Good luck OP!

  • monarchandthemilkweed
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    I was on tamoxifen for a year before switching to Arimidex. I found tamoxifen easy with no major side effects. Arimidex I’ve dealt with joint pain. On both my weight has stayed the same. Even with the joint pain I am able to exercise like I did on tamoxifen. The longer I’m on arimidex the better I’ve been feeling. It isn’t been a year yet.

  • kaynotrealname
    kaynotrealname Member Posts: 367
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    I've been on lupron and an AI for three months now. No huge side effects to speak of. Some mild aches and pains but I was expecting that since after all the shots have put me in menopause and those are symptoms of menopause. But I feel no different energy wise and can do exactly what I did before. If anything I feel better now than I did before diagnosis due to my exercise routine.

    Studies show that anti-depressants not only improve mood but can also help mitigate the physical symptoms of menopause. I'd keep that in mind. I went up a few mg right before I started my endocrine therapy and I don't know if that's why I've had smooth sailing thus far but I'm grateful for whatever reason.

  • kotchaj
    kotchaj Member Posts: 209
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    I've been on Arimidex for over a year now and am doing well on it. I was walking for exercise and just started using the elliptical again. I do a mile and a half on it, nothing crazy as I'm so out of shape now. I was overweight before I started and have actually lost some in the past year. About 15 pounds and hope to continue in that route. I started at 240 when diagnosed in 2021.

    I was told I would be on it for life, not 5 or 10 years so I just take it with my thyroid med every morning and try to just treat it like that pill. I was a bit stiff when I started and still get that way if I don't get out and walk/exercize. I sit at a desk for 40 hours a week so need to move.

    No issues otherwise. And when I get stiff, achy, I thank God that I am here to feel that way as I will be 59 this May:-)


  • janehicks
    janehicks Member Posts: 48
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    onlygirlof5 how has your experience been since switching? I hope things are going okay for you!

  • weninwi
    weninwi Member Posts: 747
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    I tolerated Tamoxifen for 3 years, no problems, but then progressed to Stage 4. Re AI's: I had unpleasant reactions to Anastrosol (Arimidex), but tolerated Letrozol (Femara) just fine. They're both AI's but chemically a bit different. If you don't tolerate one AI, ask for a switch.

  • mavericksmom
    mavericksmom Member Posts: 1,125
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    In 2019, after being diagnosed with ILC (had IDC same breast 2003) I was put on Letrozole. The doctor scared me to death, made me sign a paper with several sheets of side effects. It was the policy at the cancer hospital I was treated at to sign that paper, not simply my MO. I reluctantly went on it for 6 months, then I quit because it raised my cholesterol levels.

    In August of 2022, I was diagnosed with IDC in my opposite breast. I was treated at a local hospital this time and my new MO recommended I go back on Letrozole. I am on my 9th month with no side effects at all.

    Would I have gotten the cancer again had I stayed on Letrozole? Who knows. I think eventually I would have as I think it was already there but undetectable in 2019.

    I don't regret that I stopped it in 2019, but as long as I don't run into complications, I plan to stay on it as long as my MO recommends. Having breast cancer three times is NOT a charm!

    ****Let me add that as far as I am concerned it doesn't matter what your calculated odds are for recurrence or new breast cancer. If you have breast tissue, even after bilateral mastectomy, your odds are IMO 50/50!

    I say that because I feel the statistics mislead people, whether it is intentional or not. I had very low odds of ever getting BC again, Approx. 6%, yet I did……..two more times! My sister was given a less than 1% odds of getting MDS, a type of blood cancer, after she battled breast cancer and non-Hodgkin's Lymphoma at the same time and seemed to be free of cancer, but she got it and died from it!

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,747
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    Again, the positive stories will be far fewer than the negative ones because most folks tend not to seek support when things are going well. I did want to say that I don’t believe that statistics mislead people. Rather, I think that many don’t understand that many stats are historical, i.e. a compilation of data of what happened to others who did/took XYZ. What historical stats don’t do is predict how the same tx or meds will any individual going forward. So if stats show that 65% of those who took XYZ had side effects, that doesn’t address how it will affect those who take it in the future.

  • salamandra
    salamandra Member Posts: 736
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    My positive story is about toremifene, a sister drug to tamoxifen which has been very comfortable for me for about 3.5 years now after I gave up on tamoxifen due to side effects.

    My understanding is that premenopausal women tend to have a better experience with tamoxifen and post menopausal women with AI, so if that is why you think your MD will recommend a change, it has a good chance of being an improvement (even if not the first AI you try). But generalities only go so far, and the only way to know what your experience will be like is to try it.

  • typhoon
    typhoon Member Posts: 59
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    I've been on Anastrozole for two and a half years, so far. No issues at all.

  • sonya16
    sonya16 Member Posts: 56
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    I am really glad and relieved to see some positive comments about Anastrozole - I have read a lot of comments on other sites, all negative re: quality of life. I am slated to begin Anastrozole when I am finished with radiation therapy.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,747
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    sonya,

    As has been said many times, people don’t tend to post on support forums when they have no issues or side effects. That is true of almost all online support forum. This is not a good place to seek happy stories about AI side effects so it does present a rather skewed perspective. Keep that in your mind for all topics on bco because most who are not experiencing any difficulties generally don’t post.

  • missace
    missace Member Posts: 3
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    I read this post a few mos ago when I was just getting started here. I am now on Lupron and exemestane (aromasin) for almost 4 months and I want to share my mostly positive and very tolerable experience so far. I have hot flashes- about 6 times a day and I have night sweats which wake me up 2-3 times a night. I know that might sound not positive, but I am really having success putting a positive spin on it. I wanted to share how I have adapted so far. First, I got myself new lightweight pjs and a bunch of nice sleeveless work shirts. I bought 3 little battery fans on amazon -one for work, my pocketbook, and my living room. Bought a small table fan on amazon for my nightstand which I turn on and off- becUse I really only wNt it on me during the flushing. I keep an icy lemon water on my nightstand and drink icy water all day. I read an article recently that suggests that these types of vasomotor symptoms are a good prognostic factor and may even be associated with better outcomes! So every time I feel one coming on, I visualize like there is a "cancer roundup" going on, making an inhospitable environment for any cancer cells. I tried changing time of day from Pm to Am, but I found the symptoms better with night dosing. I have always had achy hips and bones, and So I was worried what the effect would be now. But maybe becUse zi am also on vit D now, I think my hip pain is actually better in past few months. I have not gained any weight. I havent been exercising that much because i am out of my routines after surgeries. But I plan to exercise more to help with bone health. I have not had hot flashes when exercising, so thats another positive. My MO told me this week that most women who will have problems with exemestane will notice them soon after starting. I hope its true and I hope it keeps going this well.
    For reference, I am 47 and was pre-menopausal when starting the meds. I had bilat mastectomy and no chemo no radiation.

  • moderators
    moderators Posts: 7,911
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    Welcome to our community, @missace, and thank you for posting such a helpful message! We are sure others will benefit from your advice and positive outlook!

    We also wanted to share this Research News story about other ways to manage hot flashes/night sweats that everyone here might find helpful:

    We appreciate your joining and look forward to hearing more from you soon!

    —The Mods