Tamoxifen

HapB
HapB Member Posts: 527
in Breast Cancer #1

Well, I finished radiation this week and all went very well with no issues at all. I am very happy to have that behind me.   I have some other medical issues that need to be addressed while undergoing this treatment, so I may have to start on Tamoxifen before going on an AI . Has anyone had experience with Tamoxifen? I am postmenopausal, so I don't need to worry about that. 

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Comments

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    edited August 2017 #2
    Postmenopausal and Tamoxifen

    I am postmenopausal and initially started on an AI.  I switched to Tamoxifen at about 2 years just to see if my lack of hair might be due to the AIs.  It wasn't (it's the Taxotere).  But I stayed on Tamoxifen for the duration because I tolerated it well and because my bone density actually improved, after diminishing on the AI (and I just didn't want to take a bisphosphonate yet).  Remember, not too many years ago, Tamoxifen was used for all women because the AIs had not been perfected yet.  My oncologist said Tamoxifen was a good drug.  I think the AIs might be "better" for postmenopausal women, but better than what?  I stopped at 5 years rather than continue for the now recommended 10.  5 years is what was recommended to me when I began and I just didn't want to take it longer.  My cancer was Stage 1B, Grade 2 in 2010.  Had it been a higher stage and grade, I would have taken it for the now recommended 10 years without question.  I stopped with the ok of my oncologist.  For me we decided that  the risks of being on the drug was greater than my risk of recurrence at this point.  I did well with absolutely no side effects on both the AI and Tamoxifen and I'm very happy about all of that.

     

  • Elaine_wi
    Elaine_wi Member Posts: 124 Member
    #3
    What is Al?

    I'm just curious, what is Al? I have been on Tamoxifen for about two months. I have had hot flashes but I am also going through natural menopause as well as being in the middle of six weeks of radiation treatment.

  • HapB
    HapB Member Posts: 527
    #4
    Double Whammy said:

    Postmenopausal and Tamoxifen

    I am postmenopausal and initially started on an AI.  I switched to Tamoxifen at about 2 years just to see if my lack of hair might be due to the AIs.  It wasn't (it's the Taxotere).  But I stayed on Tamoxifen for the duration because I tolerated it well and because my bone density actually improved, after diminishing on the AI (and I just didn't want to take a bisphosphonate yet).  Remember, not too many years ago, Tamoxifen was used for all women because the AIs had not been perfected yet.  My oncologist said Tamoxifen was a good drug.  I think the AIs might be "better" for postmenopausal women, but better than what?  I stopped at 5 years rather than continue for the now recommended 10.  5 years is what was recommended to me when I began and I just didn't want to take it longer.  My cancer was Stage 1B, Grade 2 in 2010.  Had it been a higher stage and grade, I would have taken it for the now recommended 10 years without question.  I stopped with the ok of my oncologist.  For me we decided that  the risks of being on the drug was greater than my risk of recurrence at this point.  I did well with absolutely no side effects on both the AI and Tamoxifen and I'm very happy about all of that.

     

    Tamoxifen

    thanks doublewhammy.  I am not happy about any of it, but what I don't have many choices. I do have osteoporosis, which was just diagnosed.  Were you also on Herceptin when you took it? 

  • HapB
    HapB Member Posts: 527
    edited August 2017 #5
    AI

    Elaine, AI is aromatase inhibitor, given for post menopausal women.

  • Apaugh
    Apaugh Member Posts: 850 Member
    edited August 2017 #6
    Als vs Tomaxifen

    I have read both meds info and they pretty much act the same way and have the same side effects. 

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #7
    How they are different

    This is what I was told at the time of my switch from AI to Tamoxifen.  I was told the AIs block the production of aromatase which produced by the adrenal glands and is converted by your body to estradiol and acts like estrogen in POST menopausal women.  Since POST menopausal women's ovaries are done, you have NO real estrogen but ER+ breast cancer still likes what they get from estradiol. Take an AI and you're not supposed to be making any estrogen at all so there is none to feed those ER+ cancer cells.   Bone loss primarily occurs from lack of estrogen which is why as women age, they tend to develop osteoporosis.  Tamoxifen on the other hand acts to block any estrogen receptors on nasty cancer cells keeping them from getting any estrogen.  PRE menopausal ovaries are struggling to still produce estrogen and so you still make it and it needs to be kept away from any receptors, so any cells will die off.  Your uterus and your bones seem to think Tamoxifen is estrogen and they like it.  Gobble gobble.  This is why uterine cancer is a common side effect of Tamoxifen, but osteoporosis usually isn't.  I can be, but it usually isn't.  The different AIs can have different side effects and "they" seem to think they are "better" than Tamoxifen in POST menopausal women, but Tamoxifen is still a very good drug.  As I said, my bone density actually improved on Tamoxifen.  We'll see how things are next year, tho. . .   

    I know this is what I remember, but it's been many years, so who knows?

    Suzanne

  • teresa41
    teresa41 Member Posts: 471
    #8
    Tamoxifen

    I started it in 2009 I'm on it for 10 years I haven't had any major issues with it weight gain hot flashes we are all different however on side effects ! my 10 years will be up in 2019 ! 

     

    Good luck to you 

    teresa

  • Elaine_wi
    Elaine_wi Member Posts: 124 Member
    #9
    Double Whammy said:

    How they are different

    This is what I was told at the time of my switch from AI to Tamoxifen.  I was told the AIs block the production of aromatase which produced by the adrenal glands and is converted by your body to estradiol and acts like estrogen in POST menopausal women.  Since POST menopausal women's ovaries are done, you have NO real estrogen but ER+ breast cancer still likes what they get from estradiol. Take an AI and you're not supposed to be making any estrogen at all so there is none to feed those ER+ cancer cells.   Bone loss primarily occurs from lack of estrogen which is why as women age, they tend to develop osteoporosis.  Tamoxifen on the other hand acts to block any estrogen receptors on nasty cancer cells keeping them from getting any estrogen.  PRE menopausal ovaries are struggling to still produce estrogen and so you still make it and it needs to be kept away from any receptors, so any cells will die off.  Your uterus and your bones seem to think Tamoxifen is estrogen and they like it.  Gobble gobble.  This is why uterine cancer is a common side effect of Tamoxifen, but osteoporosis usually isn't.  I can be, but it usually isn't.  The different AIs can have different side effects and "they" seem to think they are "better" than Tamoxifen in POST menopausal women, but Tamoxifen is still a very good drug.  As I said, my bone density actually improved on Tamoxifen.  We'll see how things are next year, tho. . .   

    I know this is what I remember, but it's been many years, so who knows?

    Suzanne

    good explanation

    Thank you Suzanne for the explanation. I am on Tamoxifin right now and although I was getting hot flashes for a while I am also going through natural menopause. I am not considered post menapausal yet because it has not been a full year since I've stopped getting periods. It sounds like Tamoxifin is better for your bones and I like that.

  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    edited August 2017 #10
    I was on tamoxifen for 5 yrs.

    I was on tamoxifen for 5 yrs. I really wasn't given other choices. I was told there were side effects-ONE BEING an enlarged uterus. (I was just done with menopuase-though I DID NOT know it until hte drs told me so..LOL) After about 3 1/2 yrs-i had to have a complete hystectomy due to an enlarged uterus.  I was off the Tamoxifin for a few mths and went back on after my surgery.

     

    Denise

  • sea60
    sea60 Member Posts: 2,613
    edited August 2017 #11
    Tamoxifen

    Hi! I too was placed on Tamoxifen after treatments (Chemo/Rads) for 5 years. You know, for me, I had so many hot flashes. I'd say about one every 20 minutes. So call it a brain fart or I just temporarily thought I was in charge but I took myself off of it. I wasn't going to see my oncologist for another 3 months so I'd tell her then. She looked at me for a long time and repeated what I had announced..."You decided to stop the tamoxifen?!" 

    So yeah, I got in trouble. She switched me to another hormone enhibitor but I didn't do well with that. So back to the Tamoxifen until the 5 years was up. Other folks didn't suffer as much as I did with the hot flashes. I'm 57, post everything and I STILL hot flash.

    Does that make me a hottie?

    Best Wishes.

    Sylvia

  • sunshine_64
    sunshine_64 Member Posts: 50
    #12
    Tamoxifen seems ok for me

    I am a head and neck cancer survivor (5 years ago, stage 4b) and a breast cancer survivor (treatment ended 4 months ago). I have

    been on Tamoxifen for about 3 1/2 months, recommended mainly for the reasons "Double Whammy" explained here in these postings -

    I had bone density issues, and my oncologist recommended it, as long as I can tolerate it. There are a few hot flashes now and then

    but nothing too unbearable (I am post-menopausal). Emotionally I like the idea of fighting the beasties with a daily pill.

  • HapB
    HapB Member Posts: 527
    #13
    Tamoxifen

    Did any of you experience hair loss from the Tamoxifen?  I have no new growth yet and am more than 3 months since a chemo 

     

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    edited September 2017 #14
    HapB said:

    Tamoxifen

    Did any of you experience hair loss from the Tamoxifen?  I have no new growth yet and am more than 3 months since a chemo 

     

    Hair regrowth

    What did you have in your chemo cocktail, HapB?

     

  • HapB
    HapB Member Posts: 527
    edited September 2017 #15
    Double Whammy said:

    Hair regrowth

    What did you have in your chemo cocktail, HapB?

     

    Hair regrowth

    taxol and Herceptin.......but I did not even finish the regimen.

  • Apaugh
    Apaugh Member Posts: 850 Member
    #16
    Hair

    I had the A/C and Herceptin.  I could not tolerate teh Taxol.  My hair is back but thinner and it dont even have what is close to the same texture, color, and appearence it use to have.

    Prayer going up for you.

    Hugs,

    Annie

  • JKoehler25
    JKoehler25 Member Posts: 12
    #17
    I guess I am a bad patient

    I did all but 4 of chemo. Now I've quit radiation. I am not a favorite of my Dr's. After treatment 21, I burned so badly I am still sufferring. If I had to choose between that and dying, I will pick dying.  I have decided I will not be taking any estrogen inhibitors. My body has had enough. I have lived a pretty good life and now I will be 65. If the cancer comes back, I will choose to do very little..  Hospice and lots of drugs. The fun kind. a little joke. You couldn't pay me a million dollars to do chemo again. I realize that some people will do anything to live, but I am not that person. It's not that I want to die, it's just that I want to live life my way. Dr's just don't get it. I told all of them from the beginning that I did not fear death and that I will not do just anything to live. Because of the chemo, I will have feet trouble for rest of my life and it's annoying and painful. Plus all the negative things that chemo causes for life. And who knows if the cancer comes back, that it's not from chemo or radiation. They would never tell you if it was. I find that during this journey that Dr's lie all the time. Not lie directly, but lie of ommision. I find that reprehensible. If you want a pat on back and for someone to tell you daisies and butterflies, then cancer is not for you. Unless you know the whole truth, you can't make informed decisions. I know the Dr will probably throw his hands up and not want me around anymore, but i think I should be able to make my own decisions. I know women who have cried when told they have to take those awful drugs for 5 more yrs. My opinion, is they don't really know for sure. It's all a big guess and us women are the guinea pigs. Well I'm not going to be one. If I have to go to all this trouble so I can come here and complain about drug side effects, then that drug is not for me. I admire all of you who have chosen to go the distance, but I don't want to live a life of side effects. I will probably take the script, then throw it away. I can't deal with these Dr's anymore. I know that if Cancer comes back, I won't be going back to the place I'm going now. The care I got there was third rate, and I'm a nurse so I know what good care is. So I can't say thank you to them for saving my life for the time being. It was me, who saved my own life. I had to fight them every step of the way.. They don't tell you that for women over 60. regular chemo can be fatal. I almost found that out, but I stopped treatment before I died from it. I wish all of you good luck in what you choose. I am at peace with the path I choose. No one lives forever anyway. I choose to live rest of my life, free of drug side effects which make life harder to live. I noticed all of you counting down to the day you can stop taking it. I don't want to be that person. I'm sure I am not alone in my chosen path. These decisions are not easy to make. 

  • meschellejensen
    meschellejensen Member Posts: 117
    #18
    You are not alone!

    JKoehler25,

    Like you I have chosen not to take Tamoxifin.  I am scard about my decision, but I have also decided that quality of life matters most to me.  I had surgery and radiation (chemo was not recommended for me because of my Mammaprint score).  While I did not have difficult skin side effects, I have nerve pain that began after surgery and returned with radiation.  It is bearable, but I am in pain whenever I am hugged or I roll over during the night.  I can live with this.  I am also very aneomic, it is a side effect of radiation (the doctors are talking about starting transfusions if I do not start responding to the perscription iron that I am taking.  I can live with this also, although I am not enjoying the thinning of my hair and constant fatigue.  I cannot live with the depression/loss of sex drive/weight gain/mood swings/damage to my heart/ of Tamoxifin, and because I am pre-menopausal it is my only option for hormonal therapy.  I would even attempt Tamoxifin if my doctor were not asking for a 5-10 year commitment.

    I have changed my diet (I am now a vegetarian), I have begun to exercise for an hour a day, I have lost 15 pounds, I take daily baby asprine for cancer prevention, and I am learning how to reduce stress and start living life to the fullest.  I don't know if the cancer will recurr, and I do live in fear of this, but for now, I am living a full life.  I don't think that my MO appreciates me much either, but all Tamoxifin offered me was a 2.5% benifit.  It wasn't enough...

     

  • Apaugh
    Apaugh Member Posts: 850 Member
    #19
    Double Whammy said:

    How they are different

    This is what I was told at the time of my switch from AI to Tamoxifen.  I was told the AIs block the production of aromatase which produced by the adrenal glands and is converted by your body to estradiol and acts like estrogen in POST menopausal women.  Since POST menopausal women's ovaries are done, you have NO real estrogen but ER+ breast cancer still likes what they get from estradiol. Take an AI and you're not supposed to be making any estrogen at all so there is none to feed those ER+ cancer cells.   Bone loss primarily occurs from lack of estrogen which is why as women age, they tend to develop osteoporosis.  Tamoxifen on the other hand acts to block any estrogen receptors on nasty cancer cells keeping them from getting any estrogen.  PRE menopausal ovaries are struggling to still produce estrogen and so you still make it and it needs to be kept away from any receptors, so any cells will die off.  Your uterus and your bones seem to think Tamoxifen is estrogen and they like it.  Gobble gobble.  This is why uterine cancer is a common side effect of Tamoxifen, but osteoporosis usually isn't.  I can be, but it usually isn't.  The different AIs can have different side effects and "they" seem to think they are "better" than Tamoxifen in POST menopausal women, but Tamoxifen is still a very good drug.  As I said, my bone density actually improved on Tamoxifen.  We'll see how things are next year, tho. . .   

    I know this is what I remember, but it's been many years, so who knows?

    Suzanne

    Suzanne

    You explained that so well.  Thank you for breaking this down for me.   My Onc did not.  Back in 2010, I had a total hysterectomy so I have no ovaries.  I am not handling this Arimedex very well.  I dont want to jump around on this pill or that.  So maybe asking for a switch to Tamoxifen would be worth a shot   All I know is I cant handle this Arimedex much longer.  My pain level is off the charts.  I am 55 and I feel like I am 90. 

    Hugs,

    Annie

  • justme52
    justme52 Member Posts: 4
    #20
    So far so good

    I have been on tomoxifin for 3 years out of the 10 I am supposed to be on it, I started it in 2015 and have a long way to go,  I have not needed a hysterectomy yet, but I have gained some fat wich I know holds hormones like crazy, yet, I stopped having hot flashes for which I am glad.  I was on carboplatin, herceptin, and taxotere for chemo.  I have my hair back wich is not a guarentee from taxotere, there is a running lawsuite for that out there if you do not have your hair back yet and it has been months since you have had hair and stopped all chemo.  I just remember that for 5 years, the chemical coctail will stay in my body and then it will be expelled and gone, that is what I worry about, I have a 5 year window I know I will live and the cancer won't come back, yet, after that time I do wonder if it will.........But I am on what I am on and am ok with it so far even with the new diagnosis of MS I'm still ok.  But I have had breakthrough bleeding where it should not exists, that is kind of scary.....

     

  • HapB
    HapB Member Posts: 527
    #21
    AI's

    J and Mesch, I understand your decisions. I had a horrible reaction to the chemo and had to stop because I live alone and could not function. I have had chemo before for another cancer and did ok with it. I am on Hercpetin infusions every 3 weeks for one year because I am triple positive. I had no issue with radiation at all. I think following the doctor's instructions not to use anything on the skin at all made the difference. It has been a month and nobody would ever know which breast was radiated. As far as the AI's go, I decided to give them a try. I am on Letrozole and so far, no issues. Time will tell. I am also 65, but I had a child when I was 40 and I am not ready to leave her quite yet. I am. Doing everything I can to make necessary changes to my diet and lifestyle. Eliminating stress is my biggest challenge. Eating a plant based diet has become pleasurable. I like learning new things and about how diet and lifestyle effects our bodies. So, we all do what we can. 

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