Tamoxifen

Heatherbelle
Heatherbelle Member Posts: 1,226 Member
edited March 2014 in Breast Cancer #1
Hi & good morning :)
Started taking it a few days ago & don't notice any changes so far, I'm sure within a few weeks I will.
I'm wondering if those of you who are on Tamoxifen, or have been on it in the past, will share any side effects you have/had with me please?
I had assumed I wouldn't be on it since I'm only a 1-4% estrogen receptor but my Onc thinks I'll still benefit from being on it -and hey, I'm all for that! But since I thought it didn't apply to me, in all this time I've been on the boards I haven't paid attention to any Tamoxifen related posts!
Thank you!!
*hugs*
Heather

Comments

  • KathiM
    KathiM Member Posts: 8,028 Member
    #2
    I'm at the other end of Tamoxifen....
    Almost 5 years...

    As you know, I am also an 'old lady' of 55 years. Surgically post-menopausal. I take Tamoxifen because the side effects are different than the ones for the AI's (arrimidex, aromasyn, etc). I have full-on osteoporosis from the cancer treatments, and high cholesterol (of my own doing...lol). Both of these are made worse by the AI's...

    I don't have my uterus, so the major 'side' with Tamoxifen, uterine cancer, is not a worry for me....

    At the beginning, I had hot flashes. And, I have a bit more trouble with my weight, but I can still lose (and gain, sigh!) it, it's just a bit harder. My joints still do bother me, but I found glucosamine/chondroitin keeps that at bay. I also take at least 1200mg calcium with Vitamin D everyday...Other than that, after 4.5 years, I have no other complaints...

    Hugs, Kathi
  • carkris
    carkris Member Posts: 4,553 Member
    #3
    KathiM said:

    I'm at the other end of Tamoxifen....
    Almost 5 years...

    As you know, I am also an 'old lady' of 55 years. Surgically post-menopausal. I take Tamoxifen because the side effects are different than the ones for the AI's (arrimidex, aromasyn, etc). I have full-on osteoporosis from the cancer treatments, and high cholesterol (of my own doing...lol). Both of these are made worse by the AI's...

    I don't have my uterus, so the major 'side' with Tamoxifen, uterine cancer, is not a worry for me....

    At the beginning, I had hot flashes. And, I have a bit more trouble with my weight, but I can still lose (and gain, sigh!) it, it's just a bit harder. My joints still do bother me, but I found glucosamine/chondroitin keeps that at bay. I also take at least 1200mg calcium with Vitamin D everyday...Other than that, after 4.5 years, I have no other complaints...

    Hugs, Kathi

    Heather ask your gyn, but
    Heather ask your gyn, but mine told me it works estrogen like on your lower parts, so you have more secretions sorta teenager like. many women think they have an infection. I have hot flashes at night. I am thinking of changing it to taking it during the day as it is making it hard to sleep. Achy but I was achy during chemo too.
  • Boppy_of_6
    Boppy_of_6 Member Posts: 1,138
    #4
    carkris said:

    Heather ask your gyn, but
    Heather ask your gyn, but mine told me it works estrogen like on your lower parts, so you have more secretions sorta teenager like. many women think they have an infection. I have hot flashes at night. I am thinking of changing it to taking it during the day as it is making it hard to sleep. Achy but I was achy during chemo too.

    3 months in
    I have been on the Tamoxifen nearly 3 months. The first SE's I noticed were being moody and irritable and the lovely hot flashes. They have all gotten better, the moodiness and irritability have gotten a lot better. Hot flashes have improved but are still here. I have had some joint achiness but not bad at all. It could just be the cooler weather too. Best wishes on this part of our journey. God Bless
    (((Hugs))) Janice
  • Hope 2010
    Hope 2010 Member Posts: 62
    #5
    From what I read, I thought
    From what I read, I thought that I would have more SE's. I've been on it for 3 weeks now and so far, knock on wood, no major SE's. I'm not sure about the hot flashes since it was hot out here in CA and now that it's cold, i'm cold. The only two thing I had was a slight tingling sensation, and my onco doc told me to eat more bananas and vit D. (It has more to do with possible leg cramps that is one SE). And mood swings..one minute, happy, then mad, then down, then normal...mostly normal. But my kids and hubby are taking it in stride and know that it's not me just the pill. Aside from that, nothing else, so far. Good luck.
    Patty
  • Heatherbelle
    Heatherbelle Member Posts: 1,226 Member
    #6
    Thank you! Hopefully I won't
    Thank you! Hopefully I won't have too hard a time with it. I'm already moody & irritable most of the time anyway, and still having major hot flashes from the chemo, so I should be alright!!
    I think I overdid it this weekend, because I feel like crap all day today-tired and sore. 8 mor days until my surgery (im counting down to the hour lol)
    Thanks again ladies who have posted & in advance to anyone else who might chime in :) i was pretty scared of Tamoxifen at first, or at least the side effects, but the more I learn the less anxious I am about it.
    *hugs*
    Heather
  • skico
    skico Member Posts: 7
    #7
    Been on for a little over two months
    I was very concerned about the side effects, but have to say they haven't really amounted to much. The only one I really worry about is the one you can't really feel - the effect on the uterus. Otherwise, not much to speak of.
  • carkris
    carkris Member Posts: 4,553 Member
    #8
    skico said:

    Been on for a little over two months
    I was very concerned about the side effects, but have to say they haven't really amounted to much. The only one I really worry about is the one you can't really feel - the effect on the uterus. Otherwise, not much to speak of.

    yes it has been definately
    yes it has been definately doable.
  • Sher43009
    Sher43009 Member Posts: 602 Member
    #9
    carkris said:

    yes it has been definately
    yes it has been definately doable.

    Hot Flashes
    If you continue to have hot flashes, talk to your oncol. I was having such bad night sweats 2 months after starting Tamoxefin that my oncol. put me on Effexor. Another benefit of it is it's classified as an anti-depressant. Wish you well with your surgery.

    Sher
  • Miss Murphy
    Miss Murphy Member Posts: 302
    #10
    More Doable
    Hi Heather!

    Tamoxifen is more doable than the AI drugs were for me - I started off on them but couldn't tolerate the side effects. I've been on Tamoxifen for 13 months and it's not great but way better. I have PMS 24/7 and hot flashes that are down to about 2 a night - some muscle and joint pain but nothing like before.

    Hopefully you will be one of the lucky ones - good luck!

    Hugs, Sally
  • sea60
    sea60 Member Posts: 2,613
    #11
    H-O-T flashes
    Big time for me. Needless to say, my favorite hangout is the freezer section at my grocery store!!
  • sohardbnme
    sohardbnme Member Posts: 129
    #12
    I do not want to take it
    I'm 90 percent estrogen positive...
  • carkris
    carkris Member Posts: 4,553 Member
    #13
    sohardbnme said:

    I do not want to take it
    I'm 90 percent estrogen positive...

    My rads onc who is one of
    My rads onc who is one of the best in the country said it is more important than chemo. because it is targeted. I was really scared too. heck I'm scared of it all, but you are a strong lady you can do it to live. This is not for sissies for sure! Like your pic SHOM.
  • Heatherbelle
    Heatherbelle Member Posts: 1,226 Member
    #14
    sohardbnme said:

    I do not want to take it
    I'm 90 percent estrogen positive...

    Rachel
    Your picture is absolutely BEAUTIFUL!!!
    I've been puffy, bloated, and tired looking since June....
    *hugs*
    Heather
  • Tinabug
    Tinabug Member Posts: 158
    #15
    not so bad 2nd time
    Hi Heather, I started Tamoxifen in June & had to quit...hot flashes, depression, lack of energy & major joint pain. My oncologist insisted I give it another try. I started it last month & it hasn't been near as bad. I do have milder hot flashes & joint pain, but it's definitely doable this time. Good luck.
  • crselby
    crselby Member Posts: 441 Member
    #16
    the best and worst
    Hi Heather. I don't want to scare you but, well, I guess I want to ahare my Tamoxifen story. I have been on it exactly a year, after first rejecting it as not being 'worth' it to decrease my chance of recurrance from 14% to 7%. But the onc convinced me to try it and I could stop it if I didn't like it.

    Since natural menopause at age 47, which was 12 years ago, I have had hot flashes that make me sweat enough for other people to notice. Not to mention my discomfort at needing to find a way to cool off. And I experienced leg cramping out of the blue, not just at night. Tamoxifen made those two menopause effects EVEN WORSE! So my gyn put me on Effexor which has brought the hot flashes back to pre-Tamoxifen levels. I still have them about 5 times in 24 hours.

    But the worst part is, I must now undergo a procedure called a hysteroscopic polypectomy. I have grown polyps in my uterus as a result of the Tamoxifen that must be removed. This is a very uncomfortable procedure and expensive! At my age, the general opinion is: take out the uterus, but I desperately want to keep all my original parts if I can.

    The risk of blood clots and uterine cancer would concern me more than the hot flashes and leg cramps. Good luck.
    ~~Connie~~
  • Heatherbelle
    Heatherbelle Member Posts: 1,226 Member
    #17
    crselby said:

    the best and worst
    Hi Heather. I don't want to scare you but, well, I guess I want to ahare my Tamoxifen story. I have been on it exactly a year, after first rejecting it as not being 'worth' it to decrease my chance of recurrance from 14% to 7%. But the onc convinced me to try it and I could stop it if I didn't like it.

    Since natural menopause at age 47, which was 12 years ago, I have had hot flashes that make me sweat enough for other people to notice. Not to mention my discomfort at needing to find a way to cool off. And I experienced leg cramping out of the blue, not just at night. Tamoxifen made those two menopause effects EVEN WORSE! So my gyn put me on Effexor which has brought the hot flashes back to pre-Tamoxifen levels. I still have them about 5 times in 24 hours.

    But the worst part is, I must now undergo a procedure called a hysteroscopic polypectomy. I have grown polyps in my uterus as a result of the Tamoxifen that must be removed. This is a very uncomfortable procedure and expensive! At my age, the general opinion is: take out the uterus, but I desperately want to keep all my original parts if I can.

    The risk of blood clots and uterine cancer would concern me more than the hot flashes and leg cramps. Good luck.
    ~~Connie~~

    thank you!
    Thank you Connie - I wanted & appreciate all info that all of you can give me -good and bad. I started getting hot flashes from the chemo, they are much worse with the Tamoxifen & I've been on it for a week exactly. I've heard a few say they took Effexor but I can't take that - my Dr put me on it for post partum depression 10 years ago and I did not like the way it made me feel, I've been on Zoloft since & feel like myself, only not depressed (I was diagnosed as manic depressive in my early 20's -i pretty much HAVE to be on anti depressants, im ok with that)
    I'm wondering about the uterine problems that I've read about. I had a uterine ablation -which basically means they removed the lining of my uterus. Since I had my baby 2 yrs ago my periods were extremely heavy & painful, once we ruled out with colposcopy and biopsy along with my regular pap exams anything serious, my Dr suggested having it done to relieve the pain & discomfort -which it has. I don't even (too much info-sorry ladies!) bleed anymore, maybe a day of spotting. I should make an appt with my gyno to talk to him about how the tamoxifen may affect me since I have no lining anymore. I was also a bit surprised that most of you have had your periods stop during chemo, and I had mine every month until the ablation procedure.
    I had also read literature that said the uterine risks were more pronounced in postmenopausal women. I don't know - you hear so much different information out there.
    I wasn't given a percentage of recurrence, I was just actually happy my onc suggested I take it, since I'm only 1-4% ER+. The way I look at it - anything I can do to prevent this from coming back and/or killing me, I'm going to do. I plain and simple do NOT want to go through all this again, and I want to watch my kids, and my grandkids grow up, and I want to grow really old with my husband.
    Thanks, Connie, for sharing your honest experience with me :)
    *hugs*
    Heather
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #18
    sea60 said:

    H-O-T flashes
    Big time for me. Needless to say, my favorite hangout is the freezer section at my grocery store!!

    hot flashes very mild
    been on Tamoxifen for about 18 mths...hardly any side effects at all..I am very lucky...and appreciate it!

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