Tamoxifen Side Effects

frog08
frog08 Member Posts: 26
edited March 2014 in Breast Cancer #1
Can you give me any and all side effects anyone may have had from taking tamoxifen??

thanks

Comments

  • vac
    vac Member Posts: 97
    hot flashes, weight gain,insomnia
  • Watercolor
    Watercolor Member Posts: 45
    I've been taking it for 16 months so far with no side effects of which I'm aware. Mary D.
  • Leenie
    Leenie Member Posts: 33
    I have been on this drug for a little over a year. I have not gained any weight with it but I am just beginning to have the hot flashes and night sweats nothing i can't handle though..I also have noticed I am cold all the time..other than that fine..
  • Leenie
    Leenie Member Posts: 33
    I have been on this drug for a little over a year. I have not gained any weight with it but I am just beginning to have the hot flashes and night sweats nothing i can't handle though..I also have noticed I am cold all the time..other than that fine..
  • Leenie
    Leenie Member Posts: 33
    Ok guys I have been on tamoxifen for a little over a year and had not gained any weight at all the first year. Now I keep putting it on I can't stand it I am almost staving myself and can't keep if off. It is so depressing Help... any suggestions?
  • LindaLempert
    LindaLempert Member Posts: 5
    I've been on tomoxifen for about a year and a half and I do have the hot flashes, nite sweats and I did gain about ten pounds. I have since lost the weight and I take black cohash (herbal) to help with the other things. You gotta do what you gotta do.
    Linda
  • Twinks56
    Twinks56 Member Posts: 37
    I've been on it for about 10 months.The effects the doctor was concerned about was blood clots to the legs.(I take an asprin a day for that) and the other was cervical cancer,but I had a hystorectomy so I do not have that worry.It was 14 years ago.I have not gained weight,but do have the night sweats but take effexor for that and it really seems to help. Teresa
  • BBK
    BBK Member Posts: 53
    Do you REALLY want to know? First, let me say that ALL WOMEN are DIFFERENT, and what may affect me might not affect you, or any other woman. So, you can't take how Tamoxifen is affecting me and ASSUME that you will experience the same things!!! ALWAYS check with your doctor, if you have side effects that seem unexplainable or unusual!

    But, for me...it's been night sweats and hot flashes (sometimes as often as every 30 minutes, lasting up to 4 minutes each) -- and the hot flashes are all day, but worse in the evening and overnight; vaginal dryness; vaginal atrophy; vaginal discharge (like a chronic yeast infection, including itching) -- I use Monostat on a not-regular basis, if it gets obnoxious; change in vision (I had to get a new prescription this year, after not having any vision changes in over 10 years!); development of type 2 diabetes (which my doctor will NOT say with any certainty is from the tamoxifen, but since I was totally healthy before breast cancer, I am fairly certain for myself that it's due to the chemo and the tamoxifen -- no medical person will commit to it being from that...but, I know my body, so I'm fairly suspicious that it's from the drugs); severe joint pain (to the point of developing bursitis in my shoulders, and knees; and having other significant joint pain in hands, fingers, and other joints; I've also seen a worsening of a heel spur and the pain associated with that). As to weight gain...nope. HOWEVER, now that I've been diagnosed with diabetes, I'm restricting my carbs and sugar -- so I've LOST nearly 20 pounds in the last 2 months! SO, it IS possible to avoid the weight gain normally associated with tamoxifen (some say women gain as much as 40 pounds in the 5 years they take the drug! Aaugh...I couldn't handle THAT!). Leg and foot cramps are also an effect of tamoxifen, and I have had trouble with that! I try to eat bananas (although now have to be careful with that because of the diabetes) -- as the potassium in bananas (and other foods) can help reduce leg cramps. The chemo started me into menopause, and I've had only 4 periods in the last year. Of course, when I have one -- it's MAJORLY heavy, to the point of flooding! I think that pretty much covers what I've had to deal with. My doctor tells me that I'm in the bottom 1% of women who complain about side effects of tamoxifen, and I seem to have gotten the whole list!

    Hang in there! Maybe you won't have any!

    Note, that I'm still taking this drug even though it does nasty things to my body -- as my doctor (and the "numbers") is convinced that this is the BEST drug for preventing a reoccurrence of bc. If so, I'm all about that.

    Best to you! Hope you don't go through ANY of the stuff some have. I wouldn't wish it on anyone...but, if your doctor thinks this drug is good for your overall health, you need to consider that.
  • cats
    cats Member Posts: 2
    The side effects I had were hot flashes but these can be controlled with Venlafaxine. I also had joint pain, extreme tiredness,and a constant sinus cold. I don't know what side effects you are having but if they are totally controlling your life there are other anti-estrogen medication out there and it is amazing how each affects a person differently.
  • cruf
    cruf Member Posts: 908
    BBK said:

    Do you REALLY want to know? First, let me say that ALL WOMEN are DIFFERENT, and what may affect me might not affect you, or any other woman. So, you can't take how Tamoxifen is affecting me and ASSUME that you will experience the same things!!! ALWAYS check with your doctor, if you have side effects that seem unexplainable or unusual!

    But, for me...it's been night sweats and hot flashes (sometimes as often as every 30 minutes, lasting up to 4 minutes each) -- and the hot flashes are all day, but worse in the evening and overnight; vaginal dryness; vaginal atrophy; vaginal discharge (like a chronic yeast infection, including itching) -- I use Monostat on a not-regular basis, if it gets obnoxious; change in vision (I had to get a new prescription this year, after not having any vision changes in over 10 years!); development of type 2 diabetes (which my doctor will NOT say with any certainty is from the tamoxifen, but since I was totally healthy before breast cancer, I am fairly certain for myself that it's due to the chemo and the tamoxifen -- no medical person will commit to it being from that...but, I know my body, so I'm fairly suspicious that it's from the drugs); severe joint pain (to the point of developing bursitis in my shoulders, and knees; and having other significant joint pain in hands, fingers, and other joints; I've also seen a worsening of a heel spur and the pain associated with that). As to weight gain...nope. HOWEVER, now that I've been diagnosed with diabetes, I'm restricting my carbs and sugar -- so I've LOST nearly 20 pounds in the last 2 months! SO, it IS possible to avoid the weight gain normally associated with tamoxifen (some say women gain as much as 40 pounds in the 5 years they take the drug! Aaugh...I couldn't handle THAT!). Leg and foot cramps are also an effect of tamoxifen, and I have had trouble with that! I try to eat bananas (although now have to be careful with that because of the diabetes) -- as the potassium in bananas (and other foods) can help reduce leg cramps. The chemo started me into menopause, and I've had only 4 periods in the last year. Of course, when I have one -- it's MAJORLY heavy, to the point of flooding! I think that pretty much covers what I've had to deal with. My doctor tells me that I'm in the bottom 1% of women who complain about side effects of tamoxifen, and I seem to have gotten the whole list!

    Hang in there! Maybe you won't have any!

    Note, that I'm still taking this drug even though it does nasty things to my body -- as my doctor (and the "numbers") is convinced that this is the BEST drug for preventing a reoccurrence of bc. If so, I'm all about that.

    Best to you! Hope you don't go through ANY of the stuff some have. I wouldn't wish it on anyone...but, if your doctor thinks this drug is good for your overall health, you need to consider that.

    Hi BBK! I'm sorry you're having such a tough time.I was glad though to read some of the things you're experiencing on Tamoxifen cause I've been on it for almost 4 years and still getting numerous hot flashes and night sweats which I know are from the meds. I am lucky and have been without my period since the first month on it. I have been having bilateral shoulder pain which I'm getting PT forand now a few fingers hurt too. I was thinking I might have Lymes. Then you said you get calf and foot cramps which I've been getting on and off for a few months and didn't think it could be the meds. I also have the constant discharge(vaginal)I haven't spoken the the MD about the joint pain and cramping but I will when I see him next month. I will stay on the Tamoxifen for my last 1 1/2 years then look to the next new medication that is supposed to help after stopping Tamoxifen and less side effects . Take care. Feel better! HUGS!! Cathy
  • juliebell
    juliebell Member Posts: 4
    BBK said:

    Do you REALLY want to know? First, let me say that ALL WOMEN are DIFFERENT, and what may affect me might not affect you, or any other woman. So, you can't take how Tamoxifen is affecting me and ASSUME that you will experience the same things!!! ALWAYS check with your doctor, if you have side effects that seem unexplainable or unusual!

    But, for me...it's been night sweats and hot flashes (sometimes as often as every 30 minutes, lasting up to 4 minutes each) -- and the hot flashes are all day, but worse in the evening and overnight; vaginal dryness; vaginal atrophy; vaginal discharge (like a chronic yeast infection, including itching) -- I use Monostat on a not-regular basis, if it gets obnoxious; change in vision (I had to get a new prescription this year, after not having any vision changes in over 10 years!); development of type 2 diabetes (which my doctor will NOT say with any certainty is from the tamoxifen, but since I was totally healthy before breast cancer, I am fairly certain for myself that it's due to the chemo and the tamoxifen -- no medical person will commit to it being from that...but, I know my body, so I'm fairly suspicious that it's from the drugs); severe joint pain (to the point of developing bursitis in my shoulders, and knees; and having other significant joint pain in hands, fingers, and other joints; I've also seen a worsening of a heel spur and the pain associated with that). As to weight gain...nope. HOWEVER, now that I've been diagnosed with diabetes, I'm restricting my carbs and sugar -- so I've LOST nearly 20 pounds in the last 2 months! SO, it IS possible to avoid the weight gain normally associated with tamoxifen (some say women gain as much as 40 pounds in the 5 years they take the drug! Aaugh...I couldn't handle THAT!). Leg and foot cramps are also an effect of tamoxifen, and I have had trouble with that! I try to eat bananas (although now have to be careful with that because of the diabetes) -- as the potassium in bananas (and other foods) can help reduce leg cramps. The chemo started me into menopause, and I've had only 4 periods in the last year. Of course, when I have one -- it's MAJORLY heavy, to the point of flooding! I think that pretty much covers what I've had to deal with. My doctor tells me that I'm in the bottom 1% of women who complain about side effects of tamoxifen, and I seem to have gotten the whole list!

    Hang in there! Maybe you won't have any!

    Note, that I'm still taking this drug even though it does nasty things to my body -- as my doctor (and the "numbers") is convinced that this is the BEST drug for preventing a reoccurrence of bc. If so, I'm all about that.

    Best to you! Hope you don't go through ANY of the stuff some have. I wouldn't wish it on anyone...but, if your doctor thinks this drug is good for your overall health, you need to consider that.

    Greetings BBK, I just found your posting on Tamoxifen side effects and my heart goes out to you--what a list! What really caught my attention was your reference to vaginal atrophy and chronic yeast infections. That is one of the things I'm struggling with now. The yeast is a nuisance but can be treated. But I am STUCK about what to do about the vaginal atrophy. I am so bad that I have cracks in my tissues that bleed and hurt, and this is not a result of intercourse, which is history at this point. I was estrogen receptive positive and my oncologists don't want me to use vaginal estrogen. But my gyn says that's my only hope. Can I ask what you are doing about it? Lubricants by themselves don't do the job for me because I am so sore from the atrophy. Thanks! Karen