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Has anyone felt BETTER on tamoxifen?

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  • rc979
    rc979 Member Posts: 5
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    Thank you for bumping this topic up. I'm starting tamoxifen tomorrow and keeping my fingers crossed I'll tolerate it.

  • muttley1
    muttley1 Member Posts: 1
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    To: rc979,

    Glad you posted this! When I read through the posts looking for the most recent one I found yours and I had to post...my first one ever. I started Tamox Dec. 7th, and so far I feel fine....hoping it stays this way!!! I was really worried about the side effects before starting. How are you doing so far?

    An aside....I'm from Idaho too....grew up in Southern ID, lived in North for most of my life. :-)


  • moderators
    moderators Posts: 8,287
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    Muttley-

    Welcome to the community! We hope you find this to be a source of inspiration as you continue treatment, and beyond!

    The Mods

  • rc979
    rc979 Member Posts: 5
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    Hi muttely1! I grew up in SE Idaho (Idaho Falls).

    So far, I'm doing great with the tamoxifen...no side effects so far. My energy is good and my radiation burns are healed. I pray it continues to go well.

    My best wishes to you all!

  • GwenGreen
    GwenGreen Member Posts: 1
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    I am always reading about the bad experiences on tamoxifen and I do sympathise, but I had good experiences. I was 41 and pre-menopause - I had no menopausal symptoms at all - I kept menstrating (lighter and less pain which was great). I lost weight - about 10 kilos (20 or so pounds), no hot flushes or sleep problems and i felt young and my sex drive actually increased ... a lot haha.

    On the negative I did have lower leg cramps for a couple of months but then they just went away.

    I was so thankful - my oncologist was a bit amazed. He left me on tamoxifen for a bit over 7 years as I had no bad side effects ( longer because I am a bit of a medical disaster with a few other on going non cancer related issues)

  • KateB79
    KateB79 Member Posts: 555
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    I feel better on tamoxifen than I did without it, too. Because of my relatively young age at diagnosis (36), and being thrust into chemo-pause anyway, I honestly think the tamoxifen has helped.

    What has it helped? Libido. Skin not as dry. More energy most of the time.

    I'll take the hot flashes/night sweats, which are my main side effect. It's a balancing act.

  • Lucsmama
    Lucsmama Member Posts: 2
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    I'm bumping this thread because I just started my tamoxifen 3 days ago and would love to hear some reassuring experiences with it! My doctor prescribed it 3 weeks ago and I put off taking it because of all the scary things I read. I've had a headache and feel more thirsty then usual but that's it. If anyone wants to update there side effects ( or lack of ) , I'd love to hear about it. I'm mostly afraid of the stories of depression and weight gain. ... Thanks ladies!

  • KateB79
    KateB79 Member Posts: 555
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    Lucsmama, I haven't really had any problems whatsoever, other than hot flashes.

    But it took about two months to get there. The first couple of months, I had a lot of mood swings (I call it "tamoxirage," and it still isn't gone completely, but it's waned), some water retention, raging hot flashes, and some muscle pain. Push through! It really does level off, and I have few complaints as of right now. No weight gain. The depression, assuming that's what that was, went away.

    Drink lots of water and exercise as much as you can. That combo helps with a lot of things, but really seems to mitigate any potential tamox SEs.

    In my world, we just added Zoladex shots, so we'll see what happens. The fun never ends!

  • traveltext
    traveltext Member Posts: 1,053
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    I'm side effect free after 18 months on Tamoxifen. However, I'm a guy and comparisons may be meaningless, but I do have a tip about taking the drug. If you take the pill about an hour before bedtime, it works while you sleep and therefore may not bother you. Also, I was advised to follow the pill with a low dose of melatonin since they really work well together. Melatonin is readily available and inexpensive from supplement suppliers. Obviously your body makes melatonin while you sleep, so you would be getting a bonus dose. Good luck.


  • YazMar74
    YazMar74 Member Posts: 6
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    Hi Ladies, I would like to hear from you who have now been on Tam for a while. I just got my rx and on my last week of rads - looking to start Sept 1. It's good to hear more positive light.

  • eastcoastts
    eastcoastts Member Posts: 352
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    Not having any SEs really -- 4 months in. I also take at night as TravelText recommended -- and with melatonin! I sleep pretty well. Better than before C, maybe. Not perfect but not bad.

    I almost wish I had a hot flash or something. Not to curse myself but then I would know it's working. Smile

  • mimie
    mimie Member Posts: 9
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    I have my first appointment with my MO the end of September, which will coincidentally coincide with my last radiation treatment. I was on HRT prior to diagnosis as 20+ years post menopausal. Had to stop the HRT after diagnosis and now have awful menopausal symptoms again. I'm wondering if MO will prescribe tamoxifen as I don't have ovaries either. Any insight would be appreciated

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    I feel amazing on Tamoxifen, and then again, I had a hysterectomy//oopherectomy this year prior to taking it. I have also lost weight and walk, alot. I have my own thread on this hormonal forum, called "uplifting and lively messages" that I plan to chronicle what I am doing, and how I am doing each day.

  • YazMar74
    YazMar74 Member Posts: 6
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    Hi ladies, I have now been on Tam for a whole week!! so far the biggest struggle is remembering to take it. I take it at night with melatonin around 9pm. I sleep okay - but have the craziest dreams. So far so good, I have the Teva brand. Now my pharmacy benefit requires me to get mail order - so am concenred I will get a different brand.

  • eastcoastts
    eastcoastts Member Posts: 352
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    I've been off Tamox for almost two weeks for Exchange surgery -- and really, don't feel much different. Maybe I was getting very small hot flashes. Idk. I actually wanted one so I'd know this damn thing was working! LOL

    I LIKE taking it because I feel like it's my security blanket of sorts.

  • Candyapple17
    Candyapple17 Member Posts: 18
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    Thank you for sharing this... I like to read both sides. I especially like the post where the girl says Thank you every day before taking it - a great reminder to be grateful we have a treatment

  • Cpeachymom
    Cpeachymom Member Posts: 249
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    I've been taking it for almost two weeks and feel better than I didbefore I was diagnosed. I'm so glad I found this thread because I was starting to think it was just me! I'm also getting Lupron shots for ovarian suppression (I'm 39). I don't know how long before side effects kick in, but so far I'm blessed.

  • AndreaLee
    AndreaLee Member Posts: 1
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    So very thankful I found this thread ! I've been panicked about starting tamoxifen. Good to hear some not so bad SE's ! Fingers crossed (for all)

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    Doing great on Tamoxifen, better than before breast cancer. I think I had too high of hormone levels floating around in my body. I also had hyst/ooph surgery and had low blood iron for years. My iron is now perfect.

  • Tpralph
    Tpralph Member Posts: 281
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    that's great Michelle! I am starting on the drug in less than 3 weeks and am a bit concerned re: if I have SE and what they will be. hoping I lose weight on it and sleep better. 

    teresa

  • Cpeachymom
    Cpeachymom Member Posts: 249
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    Teresa, been 2 months almost and still doing well. Have had some hot flashes, nothing terrible though. Hope the best for you

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    Teresa, over 40 pounds down and some more to go, on Tamoxifen. My thread, Uplifting and Lively Messages..... on this forum, is about my daily life on Tamoxifen, the events that I participate in, the cooking, the exercise, the challenges. Join me, if you would like.

  • jeanwash
    jeanwash Member Posts: 43
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    I was on tamoxifen for 5.5 years. I would have stayed on some more but they cut me off. The major side effect was periods from hell every few months. This gave me low iron and very tired until I fixed it with iron supplements. I did notice hair thinning and fat distribution to my abdomen which I never had before. Also by the end someof my liver enzymes were elevated but quickly reserved when I stop tamoxifen.

    Honestly the side effects were very minor. In a way they made me feel good that tamoxifen was being effective. For me Tamoxifen was way more scary in theory than it actually was when I took it.

  • TWills
    TWills Member Posts: 509
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    Good to know! I picked up my first bottle yesterday!

  • tinker-bell
    tinker-bell Member Posts: 40
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    Hi

    I've just had 4 weeks on Tamoxifen and so far so good. I haven't really noticed any effects at all (I do take a compatible antidepressant) except maybe a little hair shedding.Not really even hot flushes! I hope it stays like this.

  • siciliana
    siciliana Member Posts: 61
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    Five months on Tamoxifen and so far, no real hot flashes. I do have mild hip discomfort now and then, but not sure if it's tamoxifen or just plain old arthritis. For me, tamoxifen is not the horror story I had anticipated.

  • TWills
    TWills Member Posts: 509
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    Love this thread, started mine this week:)

  • legomaster225
    legomaster225 Member Posts: 356
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    I have been on Tamoxifen for about 3 weeks. First few days my fingerjoints ached a bit but that went away quickly. I can't say that I really have any noticible side effects now. Hope it stays this way.

  • GardenGirl11
    GardenGirl11 Member Posts: 7
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    I'm glad I found this thread because like many here I am also nervous about taking Tamo. It seems pretty common that when people are reviewing something they are more likely to post the negatives rather than the positives. Before this thread I was just focusing on all the negative SEs and it was making my anxiety increase. I'm glad that some people are having good results with Tamo!

  • TWills
    TWills Member Posts: 509
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    I said the same thing on a thread earlier! I think I'll stick to this thread:)