Tamoxifen Side Effects

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zoeanne
zoeanne Member Posts: 4

Hi Everyone,

I'm brand spanken new to the community.  I was wondering if you could share your experiences with Tamoxifen and any possible side effects?

Thanks!

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  • TraciInLA
    TraciInLA Member Posts: 1,994 Member
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    Welcome, Brand Spankin' Newbie!

    I've been on Tamoxifen for nearly 7 years -- only 3 years to go!  I was nowhere near menopause when I was diagnosed at the age of 40, and my body seems to be just barely starting to dip a toe into perimenopause now, so it's likely I'll stay on Tamoxifen for the full 10 years.

    I can honestly say that the only discernible side effect I've had from Tamoxifen is hot flashes.  They began after only the 2nd Tamoxifen pill I took, and were worse at night, so switching from taking it in the evening to taking in the morning helped for me.  I also -- with my doctors' blessing -- take 400 IU of Vitamin E (standard drugstore vitamin E pill) twice a day, which helps.  Vitamin E doesn't work for every woman, but it does lessen the severity of hot flashes for me.  

    There are other things your doctors can prescribe if hot flashes become unbearable (for example, a low dose of some antidepressants helps most women), so don't hesitate to ask if you need it.  I found that my OB/GYN is much more knowledgeable about hot flashes than my oncologist is, so I really work with her -- I just make sure my oncologist is okay with anything she suggests.  

    My oncologist is also ADAMANT that I see my OB/GYN annually for a pelvic exam while on Tamoxifen.  Neither my oncologist nor my OB/GYN feels that I need any other screenings because of being on Tamoxifen, though I know doctors have differing views on this, and some insist on regular transvaginal ultrasounds.

    Some women who were closer to menopause at time of diagnosis than I was find that Tamoxifen affects their periods -- that isn't my experience at all.  Once my periods returned after chemo, they went right back to normal, regular like the moon, and stayed that way for 7 years.

    Of course, everyone is different, and these are just my experiences -- but I Hope some of it is helpful to you?

    Traci

  • zoeanne
    zoeanne Member Posts: 4
    edited August 2016 #3
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    TraciInLA said:

    Welcome, Brand Spankin' Newbie!

    I've been on Tamoxifen for nearly 7 years -- only 3 years to go!  I was nowhere near menopause when I was diagnosed at the age of 40, and my body seems to be just barely starting to dip a toe into perimenopause now, so it's likely I'll stay on Tamoxifen for the full 10 years.

    I can honestly say that the only discernible side effect I've had from Tamoxifen is hot flashes.  They began after only the 2nd Tamoxifen pill I took, and were worse at night, so switching from taking it in the evening to taking in the morning helped for me.  I also -- with my doctors' blessing -- take 400 IU of Vitamin E (standard drugstore vitamin E pill) twice a day, which helps.  Vitamin E doesn't work for every woman, but it does lessen the severity of hot flashes for me.  

    There are other things your doctors can prescribe if hot flashes become unbearable (for example, a low dose of some antidepressants helps most women), so don't hesitate to ask if you need it.  I found that my OB/GYN is much more knowledgeable about hot flashes than my oncologist is, so I really work with her -- I just make sure my oncologist is okay with anything she suggests.  

    My oncologist is also ADAMANT that I see my OB/GYN annually for a pelvic exam while on Tamoxifen.  Neither my oncologist nor my OB/GYN feels that I need any other screenings because of being on Tamoxifen, though I know doctors have differing views on this, and some insist on regular transvaginal ultrasounds.

    Some women who were closer to menopause at time of diagnosis than I was find that Tamoxifen affects their periods -- that isn't my experience at all.  Once my periods returned after chemo, they went right back to normal, regular like the moon, and stayed that way for 7 years.

    Of course, everyone is different, and these are just my experiences -- but I Hope some of it is helpful to you?

    Traci

    Thanks Traci!  

    Thanks Traci!  

    I really appreciate your input.  I'm 38 and was diagnosed on July 22nd with invasive ductal carcinoma which is both in situ and invasive.  The tumor is Grade 2 and luckily it's ER & PR+ and HER2 negative. This coming Thursday is my surgery.  They are performing a lumpectomy and sentinal node removal and I have also asked them to remove my ovaries since I have had uterine fibroids and cysts.  I think I would rather them remove my ovaries than shut them down.  The way I look at it is, either way, I'm gonna go into menopause (YAY!!...cause cancer isn't enough right? LOL) I meet with my GYN tomorrow to go over the procedure and Pre op.  I also had another biopsy (MRI Guided) on a second area of concern found in my first mammogram which I will receive the results for tomorrow.  I'm pretty nervous.  I'm grateful to have found this community because although I have tons of support, I am finding myself feeling quite alone.  

     

  • TraciInLA
    TraciInLA Member Posts: 1,994 Member
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    zoeanne said:

    Thanks Traci!  

    Thanks Traci!  

    I really appreciate your input.  I'm 38 and was diagnosed on July 22nd with invasive ductal carcinoma which is both in situ and invasive.  The tumor is Grade 2 and luckily it's ER & PR+ and HER2 negative. This coming Thursday is my surgery.  They are performing a lumpectomy and sentinal node removal and I have also asked them to remove my ovaries since I have had uterine fibroids and cysts.  I think I would rather them remove my ovaries than shut them down.  The way I look at it is, either way, I'm gonna go into menopause (YAY!!...cause cancer isn't enough right? LOL) I meet with my GYN tomorrow to go over the procedure and Pre op.  I also had another biopsy (MRI Guided) on a second area of concern found in my first mammogram which I will receive the results for tomorrow.  I'm pretty nervous.  I'm grateful to have found this community because although I have tons of support, I am finding myself feeling quite alone.  

     

    You might not be taking Tamoxifen after all

    ZoeAnne,

    Very generally speaking, (of course there are always exceptions), premenopausal women take Tamoxifen, but postmenopausal women instead take an aromatase inhibitor (there are 3 to choose from: Arimidex, Femara, and Aromasin).  If you have your ovaries removed, and go into surgical menopause -- in general, that would then mean you'd take an aromatase inhibitor, not Tamoxifen.  

    Absolutely, different doctors have different ways of doing things based on your own individual situation, but you might want to speak with your surgeon, oncologist, and/or your OB/GYN to see which they plan to recommend.  

    Traci

  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
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    i was on tamoxifen for about

    i was on tamoxifen for about 3 1/2 yrs, then had a hystercomty (common side effect) and then back on the med, until i finished my 5th year.  taht was 2013

    I gained some weight, but no other side effects other then enlarged unterus

    Denise

  • zoeanne
    zoeanne Member Posts: 4
    edited August 2016 #6
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    TraciInLA said:

    You might not be taking Tamoxifen after all

    ZoeAnne,

    Very generally speaking, (of course there are always exceptions), premenopausal women take Tamoxifen, but postmenopausal women instead take an aromatase inhibitor (there are 3 to choose from: Arimidex, Femara, and Aromasin).  If you have your ovaries removed, and go into surgical menopause -- in general, that would then mean you'd take an aromatase inhibitor, not Tamoxifen.  

    Absolutely, different doctors have different ways of doing things based on your own individual situation, but you might want to speak with your surgeon, oncologist, and/or your OB/GYN to see which they plan to recommend.  

    Traci

    Traci,

    Traci,

    You were absolutely right.  I found out I don't need to take the Tamoxifen because I am having my ovaries removed.  I was so excited!  I got the radioactive tracers today.  It was quite painfull since I am already swollen and bruised.  At one point, I just started crying.  I'm so tired of being hurt!  LOL  

     

  • zoeanne
    zoeanne Member Posts: 4
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    i was on tamoxifen for about

    i was on tamoxifen for about 3 1/2 yrs, then had a hystercomty (common side effect) and then back on the med, until i finished my 5th year.  taht was 2013

    I gained some weight, but no other side effects other then enlarged unterus

    Denise

    Thanks Denise!  

    Thanks Denise!  

    I read in my research that Tamoxifen can wreck havoc on the uterus.  That was one of my concers.

    Thanks for your imput!

  • desertgirl947
    desertgirl947 Member Posts: 653 Member
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    Tamoxifen -- have been on it

    Tamoxifen -- have been on it for four years.  Am on a ten-year plan, but the onc might change what I take modway through.

    Seems that I have heat about two hours after I take my morning dose.  (I figured that out accidentally.)  It is more apparent on days when the weather is warm and humid.

    Because of earlier health issues, I already had had a hysterectomy.  So, that was not something to be alert to.