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35 and I hate my life thanks to Tamoxifen

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  • soulswithin
    soulswithin Member Posts: 11
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    Starbeauty, i will do some reading on that. Thnx so much, i was thinking there must be some natural form of estrogen reduction. I may have to opt for that.

  • Ondagrow
    Ondagrow Member Posts: 133
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    I cannot take tamoxifen... Quality of life is uuuggghhh...

  • Brandy13
    Brandy13 Member Posts: 1
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    I am 46, was diagnosed when I was 44. Had a prophylactic double mastectomy, with immediate rebuild.....tamoxiphan was the only option given to me......I lasted six months on it.....had every side effect and then some......asked what. I had to do to get off of it, and they said a hysterectomy..did it...

    Every last one of my joints hurts,I have gained 40lbs.....and yes, I'm 90 % sure the tamoxiphan was the catalyst ......I am looking at getting the gastric sleeve, to spur on the weight loss, and stave off the knee and hip replacements.....

    I am convinced TAMOXIPHAN  IS EVIL, and if  men actually understood  how awful this is, we would have something newer than a thirty year old poison

  • Tarry1
    Tarry1 Member Posts: 56
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    Hi there, I haven't been on the forum for a while and just happened to see the topic on Tamoxofen. So I thought I would list my frustrations as well..Along with the long list of side effects that have been mentioned,  Tamoxofen has also contributed to me having cataracts, which I now have to have removed .I have been on this awful drug since May 2010 and have one more year to go. AND no matter how much I try I can't lose any weight which is very depressing. I will be glad when I can stop taking this medicine

  • nikki1974
    nikki1974 Member Posts: 10
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    I've gotten a couple of emails recently because of this thread that I started back in 2010, and I thought I would update. I stopped taking Tamoxifen not long after I started this thread. I stopped at 4 years instead of 5 because I was miserable, but only after discussing with a surgeon who is an expert in the field. It is 6 years later, and I am about to celebrate being a 10 YEAR SURVIVOR! And for those of you wondering, yes, you can lose the weight once you stop the drug.

  • farmerlucy
    farmerlucy Member Posts: 596
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    Nikki - thanks for the update! So glad you're doing well. I'm at three years and counting. I may stop at four years as well.


  • nikki1974
    nikki1974 Member Posts: 10
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    Best of luck to you, farmerlucy! My philosophy is to do what you feel is right for YOU.

  • JSB2011
    JSB2011 Member Posts: 2
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    I am at the end of my Tamoxifen (5 yrs of hell) journey. Thanks for posting an update! I share the same frustration and anger that you felt while you were on it. By reading many forums that discuss Tamoxifen and the side effects, I know we are not alone. I am hoping to lose the 30lbs I gained so quickly in the beginning. It has been awful. I pushed myself to walk daily even though my knee hurt and I ate better but the weight never came off. My joints hurt so much sometimes and I feel fatigued often. I can't even look at myself in the mirror. I don't recognize the person staring back.I know I will be starting on the next drug for another 5 years but I am hoping it isn't as bad as Tamoxifen. Congrats on your 10 year mark!

  • JSB2011
    JSB2011 Member Posts: 2
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    Even though Tamoxifen is evil, it's comforting to know there are so many of us feeling the same frustration towards having to take the drug. I am about to complete my 5th year on it and probably will go on to Femara. But I am hoping it isn't as bad as Tamoxifen has been. I gained 30 unexplainable pounds right away and have been feeling like a prisoner in my own body ever since. I don't even recognize the person in the mirror.I am hoping you are doing well and can share your after-Tamoxifen stories! Have a good day! :)

  • Charys
    Charys Member Posts: 1
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    Read this thread with great interest, even though it was started 6 years ago the same problems are occuring for new women taking this drug. I am going through my own hell with it too.

  • tammyH64
    tammyH64 Member Posts: 3
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    I have read each and every post here going back to 2009. Why after so many years does it all sound the same? There is something being missed here. We are told that if we feel like hell and suffer the hot flashes and night sweats its doing its job. :) OK. and everyone that cares about me keeps trying to tell me what I should or should not eat. Hhhhmmmm.

    Taking Tamoxifen = No sleep, 20 lb weight gain, unimaginable weight gain, hate the entire world moods, im dying moods, want it to be over.

    And then theres the .... oh so your surgery was a success...they got all of it... so youre fine now. I want it to be that cut and dry.

    Having one of those days.


  • lovelau
    lovelau Member Posts: 40
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    I am5 years in remission. dr said I have ocd. I have anxiety. Meds don’t work for anxiety and depression. Not on aromatase inhibitors was on them for 3 years.
    I had no sleep last night. My arms got very hot. I don’t sweat, Tried meditation deep breathing all that to get to sleep but can’t. any one with similar experience? I put cold pack on stomach it seems to help the anxiety a little. Looking for answers . Anyone have similar situation and solve it? Thanks so much

  • lovelau
    lovelau Member Posts: 40
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    looking for breast cancer expert dealing with remission and depression and anxiety and ocd. anyone know anyone who can help?
    I’m in Hawaii. ThAnk yo

  • meow13
    meow13 Member Posts: 1,363
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    I did 4 years AI drugs, starting at age 53. They aged me terribly, I still have stiffness in my joints. Wish I never took them. Thankfully my bone density is normal for a woman my age. Sometimes we need to just say no and consider your overall health.

  • WC3
    WC3 Member Posts: 658
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    lovelau:

    If you don't mind me asking, what did the doctor base the OCD diagnosis on?