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When did your Tamoxifen side effects start?

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minarchist
minarchist Member Posts: 33

i have only been taking it for two months, so far nothing. does it take a while to kick in? thanks!

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  • Georgia1
    Georgia1 Member Posts: 188
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    Hi there. Side effects depend a lot on whether you've been through menopause or not. I'm 61, and about a month in got leg cramps at night, which then subsided. But all pretty minor for me.

  • minarchist
    minarchist Member Posts: 33
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    Georgia1 looks like we had almost the same Dx!

    thanks for the response and good to hear. i keep waiting for the side effects shoe to drop after reading 1000s of horror stories. i havent been through meno yet, so i guess we'll see!


    Cancer touched my breast so I kicked its ass. LOL :)



  • moderators
    moderators Posts: 8,286
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    Welcome, minarchist! We're glad you've joined our community here, and we hope you find this to be a supportive place. And we're also happy to hear that your side effects haven't been as bad as you were expecting! We hope you continue to respond well to your treatment and are able to manage any side effects, should they appear.

    The Mods

  • bcincolorado
    bcincolorado Member Posts: 4,710
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    I started Tamox when I was 49 and I went into instant menopause actually so the only side effect I could say I ever had was hot flashes which I managed fine with ice packs I kept in the freezer if it got bad and knew it was me and not temp outside because it was winter. Always felt better than cancer no matter what.

  • minarchist
    minarchist Member Posts: 33
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    thank you bcincolorado, its so nice to read some non horror stories, the internet had me tied in knots before i started taking it. I guess ill ask my onc if its ok that i still got my period twice, like is it working? Lol

  • gb2115
    gb2115 Member Posts: 553
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    I have been on tamoxifen x 3 years. I'm 41 and premenopausal. Periods got further apart a few months in, and hot flashes started around the same time. Periods are still weird but I rarely get hot flashes now.

    My other side effects, dry mouth (with gum irritation), dry everything really (eyes, vagina, etc), muscle/tendon pain, and now possible ligament laxity took a bit to show themselves. It's not a horror show or deal breaker but I do look forward to stopping the medicine in 7 years!!

  • Kikki
    Kikki Member Posts: 5
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    Hi everybody! I too was wondering how long side effects start kicking in after starting Tamoxifen. I started 2-3 weeks ago and so far I have a couple episodes of hot flashingBawlingin the middle of the night that last a minute or so then go away! WakeS me up out of a dead sleep though, which sucks. The other thing I noticed is a dry, itchy scalp, breast and itching a little bit all over. I also noticed I feel kind of unmotivated at times to do things. Not depressed, just kind of there, lol. I take my pill at 10am everyday. I have been making myself get on the treadmill for an hour 4-5 days a week. I’m going to start adding lightweights in the next day or so.

  • Georgia1
    Georgia1 Member Posts: 188
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    Minarchist, I totally get it - I was expecting awful side effects but mine were mild and temporary. And yes, irreverent me loves some of the sayings people share here. Another favorite of mine is: "Cancer is a bitch, but I'm a bigger one with more practice!" Hang in there.

    Happy

  • minarchist
    minarchist Member Posts: 33
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    kiki i take mine at night instead of morning, but maybe that would mean youd have your hot flashes in the day instead i dont know if thats better LOL

  • annoyingboob
    annoyingboob Member Posts: 459
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    ive been on it 2-3 weeks as well - in the mornings. i cant fall asleep easily and i wake up earlier than usual, whereas normally, im a great sleeper. ive been tired during the day, which may just be from the sleep loss. some achey joints, but i havent been moving as much - just a 1-2 hr walk each day. i dont have clearance to do any upper arm things until after exchange. not depressed, but tired feeling - little motivation to do anything. but who knows - its also covid pandemic and you are supposed to stay home. its hard to know what is tamoxifen, what is breast cancer stress, what is covid, and what is just being 50yo. ugh...good luck to us all!!

  • deweygirl19
    deweygirl19 Member Posts: 21
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    gb2115 LIGAMENT LAXITY! That has been happening to me but I didn't know the words for it, I just knew my tendons and/or ligaments were loosening so much so that I am injuring myself when I try to exercise. On the plus side, my plantar fasciitis completely went away.

  • Via
    Via Member Posts: 5
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    i one have one side effect and that is having hard tome sleeping or falling at sleep. But other than that am doing amazing with it!

  • momof2winsplus
    momof2winsplus Member Posts: 18
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    I have been on Tamoxifen for almost 3 months. I have not had any side effects. When I told my breast surgeon, she was not happy with that. She said I should be having at least some mild hot flashes by now if it is working. She is ordering a CYP2D6 test to find out if I am processing any of the tamoxifen into endoxifen. Otherwise, it is not preventing cancer from returning.

  • WC3
    WC3 Member Posts: 658
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    Either the herceptin or perjeta gave me a runny nose. It started the day after my first infusion in 2018 and did not even begin to stop until maybe 8 months after my last targeted therapy infusion..I don't recall exactly.

  • T-Dahl
    T-Dahl Member Posts: 10
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    I can’t tell you how happy I am that I found this thread! I’ve been in Tamoxifen now for 3 months. A little hair thinning, non existent sex drive & a little sweaty sometimes (but I live in South Florida so it’s hard to tell). Oh.... and the weight gain although I’m not 100 convinced it’s all because of the medication l, but that’s what I’m telling myself right now

    I definitely feel different, but like annoyningboob said, who knows why. It could be the fact I’m stuck in my expanders that should have been replaced at the beginning of May, the hormones, the lock down, working from home? IDK. 🤷🏻♀️

    Deweygirl19- my planters fasciitis has seem to gone away too! But I haven’t had any other ligament issues (yet)

    Reading all these posts just helped me know I am not alone or crazy. I have a great supportive family but in the back of my head I know they just don’t really understand what I am going through. I came on here to see if I could find some answers or at least something I could relate to! It means so much!!
    Thank you!! ♥️

  • Momgr5
    Momgr5 Member Posts: 13
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    I found someone else who itches. Oh this is crazy. It’s my forehead and hair. My whole forehead broke out with acne at 4 weeks on tamoxifen. I on week 6 now. Forehead improved, but my head is so itchy. I calling for a dermatologist appointment tomorrow. Let me know any suggestion you have

  • Momgr5
    Momgr5 Member Posts: 13
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    I have same effects from tamoxifen. At 4 weeks my forehead broke out with ?acne or something similar. It was itchy. Now forehead improved but I head and face so itchy. I on 6th week of tamoxifen now. Any sugge

  • flashlight
    flashlight Member Posts: 311
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    Momgr5, Do you take any supplements? I started with fish oil due to Tamoxifen drying out my eyes and just recently switched to krill oil. It takes a good 3-4 weeks for any of the supplements to kick in. There are some good post on supplements. I now take a few and I was never a pill taker, but they seem to help me with the side effects. Via, I had a terrible time with insomnia last year. I tried taking the Tamoxifen at different times and nothing worked. I saw where it was posted to take it at 830-9Pm and I tried that. My primary was concerned about my insomnia and told me to take gabapentin 100mg nightly with the Tamoxifen. That has worked for me so far. I still have hot flashes and it has helped with that as well at night.



  • TreUno
    TreUno Member Posts: 2
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    Hi everyone...I'm almost in tears bc I'm just finding this after being on Tamoxifen for three years. I wish it had been sooner so I could have someone to talk to ab our shared experiences. I'm 35 and here is what I've experienced:

    Hot flashes but only at night when I go to bed. Those stopped eventually but I have found, if I take it within a couple hours of going to bed, I will wake up drenched in sweat. I sleep better if I take it during the day.

    Tamoxifen immediately caused acne for me. My dermatologist put me on Doxycycline to combat the acne. However, both meds have a side effect of hair thinning. I find new plugs of hair missing often and it's heartbreaking. The front of my hair has thinned quite a bit, my hairline has receded somewhat, and the left side has had major breakage. I'm taking hair vitamins and doing proper hair regiments. Does anyone have any other advice?
    I found an article that discussed patients with endocrine therapy experience alopecia. Rogaine was suggested by my dermatologist but Rogaine is something you can’t ever stop once you start bc you’ll lose your hair all over again. No thanks

    I didn't experience vaginal dryness. I had quite the opposite experience in the beginning. My sex drive decreased but eventually came back.

    I forget things often and find it difficult to really concentrate/comprehend sometimes. I spoke with onc and she mentioned Tamoxifen can have the side effect of foggy brain. I hate that.

    I noticed “hard to lose" weight gain in my mid section and I've always been smaller. My onc thinks it's bc I'm getting older. I fully believe it's the tamoxifen. I know my body.

    I hope to get off at 5 years even though studies now suggest taking it for 10 years. My onc said we will discuss at the 5 yr mark in 2022.

    I hope this helps someone else and if anyone has any advice ab how to stop losing my hair, please send it my way. Thank you.

    God bless you all!

  • moderators
    moderators Posts: 8,286
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    Hi TreUno! Thank you so much for joining our community, and for so thoughtfully and thoroughly detailing your personal experience on Tamoxifen. We know each person's experience is different, but this kind of information can be invaluable for the next person getting ready to go down this road.

    The Mods

  • bcincolorado
    bcincolorado Member Posts: 4,710
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    Weight gain can happen with meds unfortunately. I ate salad and very low fat diet and exercised and nothing. My oncologist basically told me as long as on meds keep doing it and it is not the end of the world. Yes, I gained a lot over the years as a result not matter what I did. I was still doing ok and keeping cancer away though which was the point. Keep that in mind and not the scale.

  • Momgr5
    Momgr5 Member Posts: 13
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    flashlight, I do take supplements. I take more of those then any prescribed med. I take magnesium, biotin, vit D. Zinc, vit E, vit B it sure seems to be a lot of supplements to take daily. I tried getting into a dermatologist but no appointments available till August. With the forehead acne and all the scalp itching I will be in trouble by then. I see my oncologist next week. That is the only side effect I have noticed from the tamoxifen. I really would prefer not to switch to something else.

  • Momgr5
    Momgr5 Member Posts: 13
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    Treuno, I so far don’t have hair issues but having a terrible time with acne on my forehead into my scalp. My scalp just crazy itches. I probably will end of with hair issues if the scratching continued. I tried to see a dermatologist but they booked out till August. One Dr did prescribe doxycycline but it made me do sick to my stomach that I was told to stop taking it. Next week I see my oncologist. Maybe a referral will get me into dermatologist sooner

  • gb2115
    gb2115 Member Posts: 553
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    Deweygirl19...just saw your reply from awhile ago...yeah the laxity is crazy. Anything but the most gentle exercise just doesn't work out. And now I get to add pelvic organ prolapse to the list. Doctor said that can happen with tamoxifen induced ligament laxity... everything holding the organs in place down there stops playing nice. I guess it makes sense but man, starting to really face some quality of life issues here. I can't pick stuff up off the floor without feeling like my bladder is falling out. It's not (yet) but it sure feels like it.

    Being a woman is hard!!

  • flashlight
    flashlight Member Posts: 311
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    Momgr5, My daughter couldn't tolerate doxycycline for acne and had swallowing issues from it. Her dermatologist put her on Minocycline and she was able to tolerate that without any problems. Both have side effects, but this one is supposed to be milder. It can take a couple of months to work. Before she was married she broke out again and she was put on a prescription form of benzoyl peroxide and a topical retinoid. They also can prescribe a topical antibiotic like Clindamycin. I hope you can get in with the dermatologist sooner. They are always booked! Would a dandruff like shampoo help with the itchy scalp? I remember my mom having to use a shampoo for seborrheic dermatitis. She didn't break out, but her forehead was red and it itched like crazy into her scalp.

  • deweygirl19
    deweygirl19 Member Posts: 21
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    gb2115.... I didn't even think of pelvic organ prolapse! Geez louise! I have a lot of pelvic pain right now but I also have a lot of ovarian cysts that can cause pain too (which I think is because of the tamoxifen). Being a woman IS hard!

  • TreUno
    TreUno Member Posts: 2
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    @flashlight @momgr5

    If I take doxycycline on an empty stomach, I am done-zo!! I switched to minocycline for a very short period of time. It started turning my toenails and fingernails black and I also developed the side effect of formication which only happens to about 1% of ppl who take it. It’s where you feel like your skin is crawling. That was a crazy experience.

  • minarchist
    minarchist Member Posts: 33
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    May 16, 2020 10:28PM momof2winsplus wrote:

    I have been on Tamoxifen for almost 3 months. I have not had any side effects. When I told my breast surgeon, she was not happy with that. She said I should be having at least some mild hot flashes by now if it is working. She is ordering a CYP2D6 test to find out if I am processing any of the tamoxifen into endoxifen. Otherwise, it is not preventing cancer from returning.


    this is what im worried about :(

  • salamandra
    salamandra Member Posts: 745
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    My oncologist told me there was no correlation between side effects and whether it was working. I wish there were more consistent information about this.

  • minarchist
    minarchist Member Posts: 33
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    to update, after 2 normal periods since starting march 7th, this seems to be it--no period this month. i guess its starting to work?