Questions about taking Tamoxifen????

stmgriffin
stmgriffin Member Posts: 25
edited March 2014 in Breast Cancer #1
I just found out today that I am going to be taking Tamoxifen twice a day. Can someone please share their experience of taking this drug. Mainly the side effects..Thank you
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Comments

  • outdoorgirl
    outdoorgirl Member Posts: 1,565
    Twice a
    day,huh? Never heard of that. I take it once a day(at night before I go to bed).
    So far at least to my knowledge(and could partly be because of menopause-who knows!!)I've had some hot flashes and some constipation.
    I know some others on here have had a tougher time on it than me,but with me-so far,so good.
  • Ltalcott
    Ltalcott Member Posts: 119
    twice a day
    Tamoxifen taken twice a day makes the side effects easier to handle. I've been on it since May 1st, and have had no problems. I keep waiting for hot flashes, and while the heat seems to bother me more than normal, I haven't had any. (I live in Texas--I think it's been over 100 degrees daily for a couple of months, and the A/C on my car has quit.)

    I actually am on a two-week break. I have some additional reconstructive surgery on 8/4, and my oncologist wanted me to stop the Tamoxifen because of the risk of blood clots when I'm inactive. (For nipple construction, I don't think I'm going to be out long, but....)

    Lisa
  • stmgriffin
    stmgriffin Member Posts: 25

    Twice a
    day,huh? Never heard of that. I take it once a day(at night before I go to bed).
    So far at least to my knowledge(and could partly be because of menopause-who knows!!)I've had some hot flashes and some constipation.
    I know some others on here have had a tougher time on it than me,but with me-so far,so good.

    Split pill in half
    The instructions from the pharmacy when I picked them up today, was to split the pill in half and take half in the morning and half at night..So, I guess I will start tomorrow and see what happens..
  • Noel
    Noel Member Posts: 3,095 Member

    Split pill in half
    The instructions from the pharmacy when I picked them up today, was to split the pill in half and take half in the morning and half at night..So, I guess I will start tomorrow and see what happens..

    Some people do split it in
    Some people do split it in half and take half in the morning and half at night. They find they can get along better with it like that. They say if you have no side effects that you aren't metabolizing it. So, I guess you want se's. :(

    Good luck!
  • stmgriffin
    stmgriffin Member Posts: 25
    Noel said:

    Some people do split it in
    Some people do split it in half and take half in the morning and half at night. They find they can get along better with it like that. They say if you have no side effects that you aren't metabolizing it. So, I guess you want se's. :(

    Good luck!

    It was prescribed that way
    Noel, my DR told me to split the pill in half..So I am going to trust that he's knows what he is talking about..
  • EveningStar2
    EveningStar2 Member Posts: 491 Member
    hot flashes

    I take 20mg in the morning and the hot flashes are killing me! I am 56 and never had one before April and I'm really ready to be done with this. But I am resolved to try and ride out a year and see where I'm at with it--hot flashes really won't kill me but bc could!

    Maureen
  • outdoorgirl
    outdoorgirl Member Posts: 1,565

    It was prescribed that way
    Noel, my DR told me to split the pill in half..So I am going to trust that he's knows what he is talking about..

    Yes,your
    onc knows what he's doing and I'm glad that you feel like you can trust him-that's very important!
  • DianeBC
    DianeBC Member Posts: 3,881 Member

    hot flashes

    I take 20mg in the morning and the hot flashes are killing me! I am 56 and never had one before April and I'm really ready to be done with this. But I am resolved to try and ride out a year and see where I'm at with it--hot flashes really won't kill me but bc could!

    Maureen

    Good luck with tamox. I
    Good luck with tamox. I have decided to probably not take it as some others.

    Too many side effects.
  • stmgriffin
    stmgriffin Member Posts: 25
    DianeBC said:

    Good luck with tamox. I
    Good luck with tamox. I have decided to probably not take it as some others.

    Too many side effects.

    h

    h
  • Daledj85
    Daledj85 Member Posts: 10
    No side effects from Tamoxfin and it's been 3 yrs
    I have been on 20 mg of tamoxifin for three years and have not experienced any side effects. No hot flashes, mood swings, endometrial ca, etc. I was terrified to start the medication because of the noted side effects. It's been 3 years and still no side effects. In fact, I had an axillary lymph node dissection this month and was informed I had positive lymph nodes. Now I will be stopping the tamoxifin when I start chemo in two weeks.
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
    Daledj85 said:

    No side effects from Tamoxfin and it's been 3 yrs
    I have been on 20 mg of tamoxifin for three years and have not experienced any side effects. No hot flashes, mood swings, endometrial ca, etc. I was terrified to start the medication because of the noted side effects. It's been 3 years and still no side effects. In fact, I had an axillary lymph node dissection this month and was informed I had positive lymph nodes. Now I will be stopping the tamoxifin when I start chemo in two weeks.

    Don't they say that if you
    Don't they say that if you have no side effects that you aren't metabolozing it? And, therefore, it isn't working? Did you have the test Daled to see if you are metabolozing it?

    Tamox scares me. Doubt I will take it.

    Good luck!
  • Eil4186
    Eil4186 Member Posts: 949
    Daledj85 said:

    No side effects from Tamoxfin and it's been 3 yrs
    I have been on 20 mg of tamoxifin for three years and have not experienced any side effects. No hot flashes, mood swings, endometrial ca, etc. I was terrified to start the medication because of the noted side effects. It's been 3 years and still no side effects. In fact, I had an axillary lymph node dissection this month and was informed I had positive lymph nodes. Now I will be stopping the tamoxifin when I start chemo in two weeks.

    Hope you don't mind me
    Hope you don't mind me asking---why the node dissection 3 yrs later?
  • Eil4186
    Eil4186 Member Posts: 949
    I have been taking tamoxifen
    I have been taking tamoxifen for almost 3 years. I am premenopausal but do not have periods and my onc. says the tamox is suppressing my period. I had pretty bad hot flashes but they have very gradually begun to taper off. I also have noticed that it is more difficult to lose weight since being on this drug. I do feel that the benefits far outweigh the side effects.
  • Akiss4me
    Akiss4me Member Posts: 2,188

    Don't they say that if you
    Don't they say that if you have no side effects that you aren't metabolozing it? And, therefore, it isn't working? Did you have the test Daled to see if you are metabolozing it?

    Tamox scares me. Doubt I will take it.

    Good luck!

    I was thinking the same thing?
    I have never heard anyone not having at least one side effect. Although, I would think it is possible, just not probable. If they are doing a node disection, I would question if I was matabolizing it in the first place. (:-) Pammy
  • Alexis F
    Alexis F Member Posts: 3,598
    Daledj85 said:

    No side effects from Tamoxfin and it's been 3 yrs
    I have been on 20 mg of tamoxifin for three years and have not experienced any side effects. No hot flashes, mood swings, endometrial ca, etc. I was terrified to start the medication because of the noted side effects. It's been 3 years and still no side effects. In fact, I had an axillary lymph node dissection this month and was informed I had positive lymph nodes. Now I will be stopping the tamoxifin when I start chemo in two weeks.

    Hi Daledj. I am wondering
    Hi Daledj. I am wondering too, why 3 years later would they test your lymph nodes?

    Thanks

    Lex
  • mmontero38
    mmontero38 Member Posts: 1,510
    Tamoxifen twice a day
    I took Tamoxifen twice a day 10mg at a time for 1 1/2 years until the side efects started to get very bothersome. My doctor prescribed 10 mg 2x a day because in his experience with this drug, many women were having depression problems. There are a few on this board who had that problem, taking 20mg pills once a day. I would ask your doctor to prescribe the 10mg pills rather than the 20.

    Side effects were non-existent in the beginning and I was able to tolerate it fairly well, until about 15 months into taking the drug. I then started developing muscle and joint aches as well as swelling of the joints. Once I got to the point were I couldn't make a fist because it was so painful, my oncologist switched me to Arimidex.

    You will most likely get hot flashes and flushes, which is very normal since you are blocking the body from absorbing estrogen. It may be more in the beginning and then becomes more tolerable with time. But, please note that everyone reacts differently to medication and you should not take this as written in stone.

    Make sure to take your calcium pills everyday as you may develop osteoporosis especially, if there is a history in your family. Also, take Vit D everyday as it helps the absorbtion of calcium and there have been studies that Vit D may prevent recurrence in breast cancer.

    Finally, eating small meals more frequently may help with nausea, should you develop a quesy stomach.

    If you need further info post on the board or send me a pm and I will answer you.

    Hugs, Lili
  • stmgriffin
    stmgriffin Member Posts: 25
    Eil4186 said:

    I have been taking tamoxifen
    I have been taking tamoxifen for almost 3 years. I am premenopausal but do not have periods and my onc. says the tamox is suppressing my period. I had pretty bad hot flashes but they have very gradually begun to taper off. I also have noticed that it is more difficult to lose weight since being on this drug. I do feel that the benefits far outweigh the side effects.

    night sweats
    I am having some night sweats, but nothing I cannot handle..I agree Eil, the benefits far outweigh the side effects..thank you for post..
  • Alexis F
    Alexis F Member Posts: 3,598

    Tamoxifen twice a day
    I took Tamoxifen twice a day 10mg at a time for 1 1/2 years until the side efects started to get very bothersome. My doctor prescribed 10 mg 2x a day because in his experience with this drug, many women were having depression problems. There are a few on this board who had that problem, taking 20mg pills once a day. I would ask your doctor to prescribe the 10mg pills rather than the 20.

    Side effects were non-existent in the beginning and I was able to tolerate it fairly well, until about 15 months into taking the drug. I then started developing muscle and joint aches as well as swelling of the joints. Once I got to the point were I couldn't make a fist because it was so painful, my oncologist switched me to Arimidex.

    You will most likely get hot flashes and flushes, which is very normal since you are blocking the body from absorbing estrogen. It may be more in the beginning and then becomes more tolerable with time. But, please note that everyone reacts differently to medication and you should not take this as written in stone.

    Make sure to take your calcium pills everyday as you may develop osteoporosis especially, if there is a history in your family. Also, take Vit D everyday as it helps the absorbtion of calcium and there have been studies that Vit D may prevent recurrence in breast cancer.

    Finally, eating small meals more frequently may help with nausea, should you develop a quesy stomach.

    If you need further info post on the board or send me a pm and I will answer you.

    Hugs, Lili

    Are you doing ok on Arimidex
    Are you doing ok on Arimidex then Lili?

    Tamox is scary stuff.

    Thanks

    Lex
  • Daledj85
    Daledj85 Member Posts: 10

    Don't they say that if you
    Don't they say that if you have no side effects that you aren't metabolozing it? And, therefore, it isn't working? Did you have the test Daled to see if you are metabolozing it?

    Tamox scares me. Doubt I will take it.

    Good luck!

    No side effects - not metabolizing???
    I have never heard that if there were no side effects that it was not being metabolized. I informed the MD at each visit that I had no side effects and was told that was ok the Rx is still working. Just as not everyone has the same effects during menopause not everyone will have side effects. I was scared to start it because of the side effect warnings so I understand your concern.
  • Daledj85
    Daledj85 Member Posts: 10
    Eil4186 said:

    Hope you don't mind me
    Hope you don't mind me asking---why the node dissection 3 yrs later?

    No I don't mind you asking.
    No I don't mind you asking. I found an enlarged lymph node just above the collar bone. It was excised and biopsied. The result was "breast cancer cells" so the MD needed to go back and re-excise axillary lymph nodes.