Worried about starting Tamoxfin

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purplegingerale
purplegingerale Member Posts: 1
edited March 2014 in Breast Cancer #1
I am starting the last 8 days radiation.My onco. said I would be starting tamoxfin after finishing. I have been reading your comments. What are the pros & cons? Your comments are important. I am 69 years old so I have had a hystromecty so I hope not to have all of mood swings. I continued taking premarin until I was diagnosed with cancer.
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  • ppurdin
    ppurdin Member Posts: 1,181
    #2
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    Tamoxifin
    I have been putting off starting tamoxifin.I was taking arimidex for 4 months.And like many medicines i take i have most of the side effects.My hands hurt so bad taking it I could barley use them and they would go numb at night and wake me up.After two weeks of stopping this med. i feel so much better.But i started taking Tamoxifen two days now.I Pray it don,t give me bad side effects.Its seems to me that maybe their isn,t as many side effects as arimidex has.Good luck to you.hopefully we will do ok on it.
  • jnl
    jnl Member Posts: 3,869 Member
    #3
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    ppurdin said:

    Tamoxifin
    I have been putting off starting tamoxifin.I was taking arimidex for 4 months.And like many medicines i take i have most of the side effects.My hands hurt so bad taking it I could barley use them and they would go numb at night and wake me up.After two weeks of stopping this med. i feel so much better.But i started taking Tamoxifen two days now.I Pray it don,t give me bad side effects.Its seems to me that maybe their isn,t as many side effects as arimidex has.Good luck to you.hopefully we will do ok on it.

    I haven't taken tamoxifen
    I haven't taken tamoxifen yet either. I am still afraid of the side effects and it seems that so many on here that had recurrences had taken it. It is an individual decision if or when you take it. Just get all of the facts and do what is best for you. Good luck!

    Leeza
  • Jeepmom65
    Jeepmom65 Member Posts: 2
    #4
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    Tamoxifin
    Ladies, I have not read all the postings so I don't know if there are a lot of people with side affect issues but I thought you'd like to hear that I am taking tamoxifin with no side affects at all. I was having massive hot flashes from the chemo but now that I am on the T, they are almost completely gone. talk to your doctor. If he says it will help you, then take it. Do everything you can to keep yourself healthy. Fear is never your friend. Good luck to you all and stay strong!
  • KathiM
    KathiM Member Posts: 8,028 Member
    #5
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    I LOVE your screen name...
    I'm into my 5th year of taking Tamoxifen.

    I was 49 years old when I had a total hysterectomy as a result of my rectal cancer (needed to 'clear the surgical field' as it were, for my bowel resection) that preceeded my breast cancer. Obviously, you and I went thru 'surgical menopause'. Quick and dirty...lol!

    I do not have mood swings, and only an occasional hot flash. At the end of this year, I will no longer be taking the Tami, and I don't plan on taking anything else. The Aromatase Inhibitors (the alternative to Tami) can cause bone loss and raise your cholesterol. I am osteoporotic and have borderline high cholesterol. So, even tho eligible for Femara and Aromasyn, etc, I'm not going to take them for the 1% risk difference.

    That said, everyone is different. I had extremely bad times with my chemo, and am usually very drug sensitive. I don't notice the Tamoxifen at all....without my ovaries, there is very little estrogen left for Tami to deal with, and I cut it even further by watching how much soy (natural source of estrogen in some soy products) I eat.

    Don't be discouraged if the first 2 months have some symptoms. I can't tell you whether the hot flashes during this time period was because of the surgery or the Tami. BUT they did get better, and, as I said, my body tollerates this well.

    I will, however, be happy when I don't need anything at all...except my Actonel/calcium for the chemo-induced osteoporosis, of course!

    Hugs, Kathi
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #6
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    Just do it!
    I took tamoxifen for 7 years as we weren't sure how long I should take it back in 1987. The main problems you might encounter will probably menopausal type symptoms (hot flashes, night sweats, etc.). There are medications which can help with this such as some of the antidepressants (lexapro, effexor, cymbalta). Stay away from Paxil as it can increase risk of recurrence. There are other meds that can help--talk to your doc if you have a problem. About the 5th year, I noticed more afternoon fatigue. That was all for me.
  • carkris
    carkris Member Posts: 4,553 Member
    #7
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    CypressCynthia said:

    Just do it!
    I took tamoxifen for 7 years as we weren't sure how long I should take it back in 1987. The main problems you might encounter will probably menopausal type symptoms (hot flashes, night sweats, etc.). There are medications which can help with this such as some of the antidepressants (lexapro, effexor, cymbalta). Stay away from Paxil as it can increase risk of recurrence. There are other meds that can help--talk to your doc if you have a problem. About the 5th year, I noticed more afternoon fatigue. That was all for me.

    after aweek I feel ok, some
    after aweek I feel ok, some nausea so I switched to taking it at night. I am on lexapro so maybe it helps the hot flashes. i get a few but no big deal , and no more than pre tamoxifen so far.....
  • KathiM
    KathiM Member Posts: 8,028 Member
    #8
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    carkris said:

    after aweek I feel ok, some
    after aweek I feel ok, some nausea so I switched to taking it at night. I am on lexapro so maybe it helps the hot flashes. i get a few but no big deal , and no more than pre tamoxifen so far.....

    Oh yeah, you are right!
    I take mine at night...I'm asleep for any of the sides...lol...

    (My beau says I am sometimes asleep for other things as well...ROFL!)

    Hugs, Kathi
  • crselby
    crselby Member Posts: 441 Member
    #9
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    FYI
    info from the Susan Love Research Foundation...This finding confirms previous research which suggested that the side effects of tamoxifen were an indicator that the drug was working and that women who were not experiencing side effects were not getting the full benefit of the drug because their body was not metabolizing it properly....
    ~~Connie~~
  • bluwillo
    bluwillo Member Posts: 113
    #10
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    crselby said:

    FYI
    info from the Susan Love Research Foundation...This finding confirms previous research which suggested that the side effects of tamoxifen were an indicator that the drug was working and that women who were not experiencing side effects were not getting the full benefit of the drug because their body was not metabolizing it properly....
    ~~Connie~~

    Curses, foiled again!
    Drat! I was just going to brag about the lack of side-effects from Tami...
    I had a total hysterectomy about 25 years ago, so did the rapid menopause. My onc said I might get some side effects, but he wasn't sure. (I've noticed he's never absolutely SURE about anything! way to cover his behind!)

    So, I take Tami before I go to bed. No hot flashes, no mood swings, maybe some increased pain in my osteoporosis affected hip and back. The funniest thing, tho, is one week was kinda "growly" around here. DH was crabby, so I asked him if he had changed his meds. He got all superior looking and said the problem was me, I was crabby because of the new med (Tami) I had started. What was so hilarious was that I was still doing rads, and hadn't even started Tami yet! Guys!

    So, now, if I'm not having side effects, Tami is not doing her job? She's not metabolizing very well? Maybe if I fed her more chocolate, that would help? That's how I'm going to deal with this piece of news. I will always find the positive, and the chocolate!!
  • carkris
    carkris Member Posts: 4,553 Member
    #11
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    bluwillo said:

    Curses, foiled again!
    Drat! I was just going to brag about the lack of side-effects from Tami...
    I had a total hysterectomy about 25 years ago, so did the rapid menopause. My onc said I might get some side effects, but he wasn't sure. (I've noticed he's never absolutely SURE about anything! way to cover his behind!)

    So, I take Tami before I go to bed. No hot flashes, no mood swings, maybe some increased pain in my osteoporosis affected hip and back. The funniest thing, tho, is one week was kinda "growly" around here. DH was crabby, so I asked him if he had changed his meds. He got all superior looking and said the problem was me, I was crabby because of the new med (Tami) I had started. What was so hilarious was that I was still doing rads, and hadn't even started Tami yet! Guys!

    So, now, if I'm not having side effects, Tami is not doing her job? She's not metabolizing very well? Maybe if I fed her more chocolate, that would help? That's how I'm going to deal with this piece of news. I will always find the positive, and the chocolate!!

    I was told that by my onc
    I was told that by my onc that tamoxifen seems most effective in women with side effects. I have noticed an increase in depression, but its hard to tell as I have not felt well this weekend and people do experience that post treatment. I am grouchy but there could be many reasons for that too. whats the alternative, remove your ovaries and take arimedex? I know there is a test to see what kind of tamoxifen metabolizer you are. my doc doesnt do it.
  • jnl
    jnl Member Posts: 3,869 Member
    #12
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    crselby said:

    FYI
    info from the Susan Love Research Foundation...This finding confirms previous research which suggested that the side effects of tamoxifen were an indicator that the drug was working and that women who were not experiencing side effects were not getting the full benefit of the drug because their body was not metabolizing it properly....
    ~~Connie~~

    I have read that in several
    I have read that in several places too Connie. Thanks for posting it.
  • cvolk821
    cvolk821 Member Posts: 36
    #13
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    crselby said:

    FYI
    info from the Susan Love Research Foundation...This finding confirms previous research which suggested that the side effects of tamoxifen were an indicator that the drug was working and that women who were not experiencing side effects were not getting the full benefit of the drug because their body was not metabolizing it properly....
    ~~Connie~~

    The flip side
    I asked my Onc the effective-only-with-side-effect question. My only side effect is being a little over emotional (crying over coffee commercials, etc). He said the side effects of Tamoxifen are as varied in type and strength as different women's menopause symptoms. He assured me there was no connection between wicked Tamoxifen side effects and its effectiveness. Imagine my confusion!

    Connie
  • KathiM
    KathiM Member Posts: 8,028 Member
    #14
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    cvolk821 said:

    The flip side
    I asked my Onc the effective-only-with-side-effect question. My only side effect is being a little over emotional (crying over coffee commercials, etc). He said the side effects of Tamoxifen are as varied in type and strength as different women's menopause symptoms. He assured me there was no connection between wicked Tamoxifen side effects and its effectiveness. Imagine my confusion!

    Connie

    It depends....
    On how much estrogen there was before you started.

    For me, and anyone without ovaries and a uterus, there is FAR LESS estrogen being manufactured by my body. Tami is there for the 'clean up crew' task...the stuff that is ingested from food, and a bit that is produced by my body still.

    But, the BIG thing is to have faith in your doc. Listen to what she/he wants you to do.

    Saying blanketly that you must have side effects to a drug is silly....especially this one...

    Do all women that go thru menopause naturally have major hot flashes, etc? Of course not...each person is different!

    My 2 cents, almost 5 years out, no reoccurance....

    Kathi
  • BethInAz
    BethInAz Member Posts: 203 Member
    #15
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    Not a biggie for me
    Good morning, purplegingerale! I've been on tamoxifen for about 3 months. Only side affect I've had are the hot flashes. No mood swings for me! (I'm just always so pleasant, don't you know!) Pros are the obvious - it blocks estrogen from getting to any wayward cells that feed on estrogen (if you're hormone positive). The cons are the more serious side affects, i.e. uterine cancer (1/10 of 1% of women), stroke, blood clots. My GP said that if I should begin bleeding, come in right away because uterine cancer is slow growing and highly treatable. For the blood clot thing, just don't sit in one position for forever - like on an airplane or in a car. Get up/out and walk around a bit. So far, I'm doing just fine on it - and I'm going to do whatever I can to avoid a recurrence! My family is too precious to me to have them go through losing me!!
    Much grace in your decision making...
    Beth
  • tgf
    tgf Member Posts: 950 Member
    #16
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    BethInAz said:

    Not a biggie for me
    Good morning, purplegingerale! I've been on tamoxifen for about 3 months. Only side affect I've had are the hot flashes. No mood swings for me! (I'm just always so pleasant, don't you know!) Pros are the obvious - it blocks estrogen from getting to any wayward cells that feed on estrogen (if you're hormone positive). The cons are the more serious side affects, i.e. uterine cancer (1/10 of 1% of women), stroke, blood clots. My GP said that if I should begin bleeding, come in right away because uterine cancer is slow growing and highly treatable. For the blood clot thing, just don't sit in one position for forever - like on an airplane or in a car. Get up/out and walk around a bit. So far, I'm doing just fine on it - and I'm going to do whatever I can to avoid a recurrence! My family is too precious to me to have them go through losing me!!
    Much grace in your decision making...
    Beth

    Doing fine
    I'm 66 ... had a lumpectomy 1/21/09 ... then chemo ... then radiation ... then started tamoxifen. My oncologist told me it wasn't much of a decision for me (triple positive) ... and to just do it. So I am. My biggest concern was that I had been on zoloft and wellbutrin for years ... and they were working just great. But ... just as I was getting ready to start tamoxifen the news came out that those two antidepressents should NOT be taken with tamoxifen ... which meant I would have to change to some other antidepressent. That scared me more than tamoxifen. Anyway ... my oncologist and I worked out a fairly slow process of taking me off zoloft and wellbutrin gradually ... and switching to effexor ... to be sure I didn't totally go nuts ... :-) After that switch was found to be working OK ... then I started tamoxifen ... but instead of taking one 20mg ... I take one 10 mg in the morning and one 10mg at night. It's been several months now ... and everything seems to be just fine.

    hugs.
    teena
  • Megan M
    Megan M Member Posts: 3,000
    #17
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    CypressCynthia said:

    Just do it!
    I took tamoxifen for 7 years as we weren't sure how long I should take it back in 1987. The main problems you might encounter will probably menopausal type symptoms (hot flashes, night sweats, etc.). There are medications which can help with this such as some of the antidepressants (lexapro, effexor, cymbalta). Stay away from Paxil as it can increase risk of recurrence. There are other meds that can help--talk to your doc if you have a problem. About the 5th year, I noticed more afternoon fatigue. That was all for me.

    Take it when or if you feel
    Take it when or if you feel like it. Don't take it before you feel you are ready too.

    Good luck!
  • Megan M
    Megan M Member Posts: 3,000
    #18
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    tgf said:

    Doing fine
    I'm 66 ... had a lumpectomy 1/21/09 ... then chemo ... then radiation ... then started tamoxifen. My oncologist told me it wasn't much of a decision for me (triple positive) ... and to just do it. So I am. My biggest concern was that I had been on zoloft and wellbutrin for years ... and they were working just great. But ... just as I was getting ready to start tamoxifen the news came out that those two antidepressents should NOT be taken with tamoxifen ... which meant I would have to change to some other antidepressent. That scared me more than tamoxifen. Anyway ... my oncologist and I worked out a fairly slow process of taking me off zoloft and wellbutrin gradually ... and switching to effexor ... to be sure I didn't totally go nuts ... :-) After that switch was found to be working OK ... then I started tamoxifen ... but instead of taking one 20mg ... I take one 10 mg in the morning and one 10mg at night. It's been several months now ... and everything seems to be just fine.

    hugs.
    teena

    What Teena wrote is what
    What Teena wrote is what several have done, split it up and take 10 in the morning and 10 later. Wishing you good luck!

    Hugs, Megan
  • Angie2U
    Angie2U Member Posts: 2,991
    #19
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    cvolk821 said:

    The flip side
    I asked my Onc the effective-only-with-side-effect question. My only side effect is being a little over emotional (crying over coffee commercials, etc). He said the side effects of Tamoxifen are as varied in type and strength as different women's menopause symptoms. He assured me there was no connection between wicked Tamoxifen side effects and its effectiveness. Imagine my confusion!

    Connie

    I thought I was the only one
    I thought I was the only one that hadn't taken that little white pill, but, I guess I am not. The side effects still worry me.


    Hugs, Angie
  • phoenixrising
    phoenixrising Member Posts: 1,508
    #20
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    Some people do really well
    Some people do really well on Tamoxifen and you could be one of them. But you gotta take it to find out. And besides, if it doesn't work out you can always stop, right? It has saved millions of women's lives so please don't let fear make the choice for you. I was afraid too and as a matter of fact I was terrified of everything. I didn't even have a doc before I found my tumour. My friends were of the alternative type and believed things like chemo kills more people than saves, special diets will cure you and on and on. I'm sure you've heard these things. If I had followed them, I wouldn't be dancing with NED that's for sure. But I waited and waited and looked and looked for anything alternative so I didn't have to go this route. And the numbers were NOT there. So here I am, writing you and saying, "try it, you'll like it!!", seriously, give it a shot and if it's too much than forget about it. Hugs to you and I hope whatever decision you make turns out to be the best :)
    jan
  • gagee
    gagee Member Posts: 332
    #21
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    Hi,
    My onco. put me on
    Hi,
    My onco. put me on Aramedex (sp) instead of Tamoxfin because I am 63 and had a total hyst. when I was 42 and on hormones for 14-15years. She said that was way to long and could have caused the cancer. Women aren't on the hormones for so long any more.
    Hate to tell you .. I had mood swings and crying the first month or so. They are way less now but the HOT FLASHES and CHILLS are terrible. Not unbearable but terrible just the same. She said that some women stopped having the side effects after a year and some went the whole 5 years with side effects. Sorry to give you the bad news. No one told me and I wish I had been told. Not that I could do anything about it.
    Maybe you will be lucky and not have them. Some women don't get one side effect.
    Whatever good luck and my Prayers are with you.
    I found this site a few weeks ago and it has helped me a lot. Hope the same for you.

    Many hugs and prayers,
    Diana

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