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Bottle o Tamoxifen

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Comments

  • eileenr56
    eileenr56 Member Posts: 10
    edited October 2010

    I started Oct 1 and I was constipated. That's been my only side effect.  That seems to be resolved, but I stopped my Vit D and eating bananas.  I was taking 2000u of Vit D and eating a banana a day for the potassium.   I want to introduct one thing at a time to see if either one of those caused  it.

    I was taking benedryl for years.  I switched to melatonin and I have to say, I feel great.  I still wake up in the middle of the night, but I eventually go back to sleep.  My sleep seems to be better.  No foggy head the next day.  hmmm.  I'm looking for Time Released Melatonin now.

  • eileenr56
    eileenr56 Member Posts: 10
    edited October 2010

    I've asked this before.  Are the women that don't have side effects post menopausal.  I am post menopausal.  I figured I have already had the side effects you guys are having.  But we'll see.

  • peg119
    peg119 Member Posts: 190
    edited October 2010

    eileen56 - I am postmenopausal and having SE of constipation, joint pain, hot flashes, and difficulty sleeping so it is not just the premenopausal women.  Hopefully, you will continue to be SE free.

  • juli0212
    juli0212 Member Posts: 801
    edited October 2010

    Eileen:  I was pre-menopausal, then chemo-induced into menopause in one day (taxol).  Got all the hot flashes/night sweats before radiation, then tamoxifen.  They continued and I still have them a month after switching to Aromasin (POST-menopausal for sure now).  I didn't have much if any joint pains, I take sleep meds anyway, so sleep is not an issue.  Basically I had minimal effects.  Isn't it unusual for an oncologist to prescribe Tamoxifen for post-menopausal women?  Isn't it rather the aromatase-inhibitors (aromatase is released from the adrenal glands after menopause instead of the ovaries, which also has estrogen in it, hence the aromatase inhibitor).

    Just curious, as that's the protocol here anyway.  PEG:  Do you also take tamoxifen, though you are post-menopausal as well?  Again, just curious.  My best to you all~~~juli

  • eileenr56
    eileenr56 Member Posts: 10
    edited October 2010

    Juli

    I have stage 0 DCIS.  That is the only drug that works on DCIS.  The Aromasin drugs dont work the same way.  I did have consitpation at the beginning and that has been resolved.  So far so good.

  • juli0212
    juli0212 Member Posts: 801
    edited October 2010

    eileen:  Thank you for educating me, I didn't know any of that.  Gotcha!  I take 9grams of fish oil a day, and that helps also with constipation, dry skin, not to mention its original purpose, to lower my triglycerides.  We live and learn, and I thank you for that~~ALL my best to you...juli

  • KittyDog
    KittyDog Member Posts: 656
    edited October 2010

    I just wanted to say goodbye to this thread.  I hope all you lovely ladies do well on Tamoxifen.  My Oncologist gave me the okay to stop today.  Hysterectomy is in 11 days.  He will be putting me on the other stuff in Dec.  Goodbye constipation and hot flashes....hello worry wart.  lol  I will worry every day now untill I get put back on something whether my cancer has come back.   

  • JFV
    JFV Member Posts: 341
    edited October 2010

    Kitty Dog- Hugs and hang in there.  Surgery stinks.  You will get through this!  Best wishes!

  • Chevyboy
    Chevyboy Member Posts: 10,258
    edited October 2010

    Hi Gals!  It's a safe bet that I'm older than just about everyone here, Ha!  But I was told that I would be on Tamoxifen, but both my Surgeon and Radiologist....The Oncologist DID want me to try Femara, BUT after reading up on BC.ORG, I was too afraid, because of all the side effects.

    Tamoxifen has been around for probably 15 years or so, so it's been proven, & comparatively, there ARE fewer side effects with Tamoxifen over Femara OR Arimidex.  But yes, Tamoxifen was the only pill for a long time, whether pre or post-menopausal, until they came up with the newer ones tailored for us "seasoned" gals...Undecided

    When I DID have side effects they only lasted for maybe a week or so...And when I DID have problems....it was from taking Melatonin to help me sleep, which caused ME the need to take a lot of Immodium AD!   Once I figured THAT one out, I was just fine!   So watch what else you are eating or taking along with the Tamoxifen.....And that's your lesson for today!  Wink

      xoxoxoxoxo

  • Resting
    Resting Member Posts: 117
    edited October 2010

    I've always enjoyed your comments Kitty Dog. Though I haven't posted lately I still check in here often. You've always had such a positive spirit. Keep us posted once in awhile -- K? There are still some of us who could use your wisdom. Smile

     Soooooooo glad your coming off the Tamox and know I'll say a prayer for your surgery and a full recovery.

        Blessings, Carolyn

  • cs7777
    cs7777 Member Posts: 303
    edited October 2010

    Best to you Kittydog!!!!

    JFV, moodiness is definitely an SE with tamox so it very well could be the culprit for you.  If it hangs on definitely see your doc about this and any of your SEs. 

    eileen, I'm premenopausal and don't have many SEs, so whether you have various ones is not just associated with menopausal status.  Everyone's just different. 

  • ladym13
    ladym13 Member Posts: 107
    edited October 2010

    Hi Ladies,

    I am starting my Tamox tonight, was told to start at night incase of any nausea.

    I'm scared to start, but just gotta do it, just wondering, do most of you take it at night? Did anyone start with a reduced dose? or half a pill to start? My onc told me to take 20mg once a day.

    Also just wondering if there is anyone out there, that has stopped the Tamoxafin before the 5 years were up to try and get pregnant? 

    uuuuuggggh here's hoping that I have minimal SE.

    Mo :)

  • in_cognito
    in_cognito Member Posts: 87
    edited October 2010

    ladym - I started Tamox last Friday.  I take the full 20 mg in the morning.  Hoping you have minimal SE's from it too!  So far, I've noticed constipation and some "warm flashes."  I think I have read about some ladies that stopped Tamoxifen after two years to try to get pregnant, then resumed taking it after pregnancy.  Do you go to YSC.org's message boards?  You might find a topic about that there as well under Fertility After BC. 

  • cs7777
    cs7777 Member Posts: 303
    edited October 2010

    Hi Mo - I take it 1x/day in the morning, a 20 mg tablet.  I think most people take one per day, although a few people split the dose.  Conversations here I think can be summed up as, most docs say to take it at the time you'll remember it..  In addition, for people who have some SEs, some of them have tried varying the time they take it or splitting the dose to see if it helps.  They'll have to pipe in themselves to tell you if it worked.

    I'd say just dive in and give it a go!  I think its fair to say that SEs don't generally hit with the first pill.  Hopefully it'll be a nonevent for you!

  • KittyDog
    KittyDog Member Posts: 656
    edited October 2010

    Thank you Carolyn....I will try to remember to come back and post encouragement then.  How about when I have my first hot flash from having no ovaries I come back and sweat it out with you!

  • rgiuff
    rgiuff Member Posts: 339
    edited October 2010

    LadyM, many women do stop the tamoxifen to try to get pregnant and for some reason, 2 years seems to be the magic number at which women are told they can try this. 

    I've taken tamoxifen, morning, afternoon, evening, and night.  On occasion, I forget to take it, so I just take it later in the day when I remember and then I try to keep that as the time until I forget again, so that is why the time has been pushed around so much.  I've mostly stuck with a morning or lunchtime schedule, but sometimes work is so intense that I completely forget about it.  But the time I take it has made no difference as far as side effects go.  

    Any med I start on, I've noticed seems to affect my digestive system with gas pains and/or constipation until I get used to it, same thing happened with tamoxifen.  Now after 2 years on it, my digestive system is working better than it ever did, no problems or discomfort at all.   The hot flashes and vaginal discharge are the most consistent side effects that do occasionally fade away, but always come back in full force.  And insomnia is becoming more and more of a problem this year, not so much the first year I was on tamoxifen.   I'm not postmenopausal yet, confirmed by blood tests a couple of weeks ago even though my periods have become a very rare thing. 8 months since the last one.  My Onc and my Gyn both think it's the tamoxifen suppressing them, I thought I was just getting closer to menopause, it's very confusing to know what is from tamoxifen and what is from perimenopause.

  • peg119
    peg119 Member Posts: 190
    edited October 2010

    Eileen - I too have DCIS stage 0 but when I started Tamox had only been without a period for 4-5 months so they didn't really consider me postmenopausal.  I haven't had one since even though I have both my ovaries.  I am 51 so it is about that time. 

    I am glad to hear from others that after awhile the constipation straightens out.

  • Resting
    Resting Member Posts: 117
    edited October 2010

    Sounds good to me Kitty Dog. Laughing LOL

        Happy Trails

  • ladym13
    ladym13 Member Posts: 107
    edited October 2010

    thanks for the info...I just popped my very first Tamox and read through the side effects sheet and saw HAIR THINNING!!!!! WHAT??? I almost had a heart attack, my hair is just starting to come back and thicken up. Is this a common SE? Anyone notice this?

  • Lady_Madonna
    Lady_Madonna Member Posts: 313
    edited October 2010

    Hi Mo,  I switched to taking my Tamox one tablet in the a.m; just easier and hopefully I won't have as many problems sleeping at night (ha!) 

    I read that about the hair too- sucks, huh?!  Between Tamox and Herceptin we're probably screwed.  Watcha gonna do?!

  • rgiuff
    rgiuff Member Posts: 339
    edited October 2010

    My hair has thinned a bit around the temples, most noticeable this past year, but it was slowly doing that anyway the last couple of years and maybe would have happened anyway due to my age (49), but I'm always wondering if I could blame it on the tamox.   Any nobody but me seems to notice and I don't notice any difference when I look at pictures from a couple of years ago except for when I have my hair pulled back.  Hairdresser still says I have plently of hair.

  • momofcuig
    momofcuig Member Posts: 9
    edited October 2010

    Hello....

    So happy to find this thread.....

    After a lengthy discussion with my Onc I have decided to go for the Tamoxifen! After everything I've read about the SE's I was very hesitant. I have a history of a thrombosis (blood clot) which is also a side effect of Tamox. So I did not want to rush in to taking it. But it seems...that the benefts outweigh the risks for someone like me with an estrogen positive tumor. And I found out yesterday I am pre menopausal.

    I also have high cholesterol and I found out that Tamox has been known to lower this! Wow!! An added bonus!

    About the hair thinning....my paper work say's nothing about that. Maybe it will be on the actual packaging when I pick up med today from pharmacy. But I did read it can cause facial hair.

    What I'm wondering is....how are we suppose to know if what we are experiencing is a symptom, side effect of the med or just a plain ole sign of menopause??? More things to have to think about and probably loose sleep overSmile 

  • Chevyboy
    Chevyboy Member Posts: 10,258
    edited October 2010

    Morning gals!  I have not had any trouble with "hair thinning".....I'm "post" menopausal, I guess you could say....or maybe more like "that was so long ago, I forgot what it was!"  Been taking Tamoxifen for 10 months....Only thing I notice now are the "warm waves" that seem to envelope me for no apparent reason!   But any other side effect has worn itself out, & given up! 

    Actually I don't know WHEN I ever went through menopause...I was on the birth control for so many years, and then Premarin after that.  MY 87 year old neighbor is STILL on Premarin.  I had a hysterectomy, kept my ovaries, (because they had been caught up in adhesion's from SOMEthing) So I never met a hot flash, or knew when I started or finished "menopause."  And no extra facial hair here....My Daughter says she just "shaves" it....Yikes! 

    Maybe if "hair loss" is noticeable, it has something to do with also getting chemo?  Previously? Man, I don't know! 

  • poohbear21
    poohbear21 Member Posts: 23
    edited October 2010

    Hi Everyone.

    I just finished my chemo a week ago and my onc wants me to start Tamoxifen already? Also, he advised against taking vitamins??? When did you ladies start taking Tamoxifen? I would love some input. It just seems to me that oncologists have differences in opinions.

    Thanks

  • dara_diverse
    dara_diverse Member Posts: 5,004
    edited October 2010

    Poobear,

    I did not start taking the tamox until I got the results of the genetic test for the BRCA1 and 2 which came back negative.  I have been taking it for one week now.  I am having  hot flashes, mainly when I sleep, I wake up and my face and neck are sweaty but it is not too bad.  I went from taking it in the am to the pm and I do get through the day without hotflashes. I think the tamox also brought on my period, it was not due until the 20th and I started bleeding the day after I tool the first pill. I am 49 years old and still having periods.  I am hoping that this will bring on menopause.  I am also experiencing constipation, did not realize it was a SE until I read the posts here.  It is going to be a long five years!  

  • Alaina
    Alaina Member Posts: 153
    edited October 2010

    So I picked up my 4th bottle of Tamoxifen last night from Walgreen's.  The bottle had a PINK LID on it!  *ugh*  I'm thoroughly disgusted!  LOL!!!  October is really starting to be my least favorite month of the year.

  • tory
    tory Member Posts: 85
    edited October 2010

    I'm getting tired of pink too, Alaina! It's everywhere this month. Grocery coupons, for pete's sake!

  • tory
    tory Member Posts: 85
    edited October 2010

    I came across this right after I posted the above.

    http://www.heralddeparis.com/take-your-pink-ribbons-madison-ave-this-is-breast-cancer/60680

  • Alaina
    Alaina Member Posts: 153
    edited October 2010

    WONDERFUL article Tory!  Thank You!

  • EvaPerone
    EvaPerone Member Posts: 14
    edited August 2013

    Lady M: I'm a year into T and my hair came back from chemo thicker than ever - so far so good. It has returned to my natural texture but thicker. I take my T in the am after I eat to avoid nausea. Taking at night gave me more night sweats. So I switched to am. Again, everyone is different, figure out what works. T is one part of treatment that has absolutely conclusive data that it works.

    I would argue that many of us are being overtreated but T is good. It gives me an extra 10% bump in probability that I will NOT get a reoccurence.

    Sign me Stage 3 with a false neg mammo...

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