Tamoxifen, different point of view

crselby
crselby Member Posts: 441 Member
edited March 2014 in Breast Cancer #1
I'm hoping more information will make me less scared.

As I discussed the Tamoxifen posts with my husband, he pointed out that we're hearing mostly from women who've had problems. That's good, because I think the doctors don't give us all the details (maybe they don't KNOW all the details that we suvivors do)! But let's see if we can have a balanced discussion on this.


Is there anyone out there who has taken Tamoxifen for years and hasn't had a recurrance, perhaps due to this drug, and hasn't had side effects? According to my med onc's statistics, there should be lots of you!

Connie

Comments

  • gilli
    gilli Member Posts: 18
    #2
    tamoxifen
    sorry i just started tamoxifen a few months ago. don't know anyone else who has taken it
  • helen e
    helen e Member Posts: 223
    #3
    gilli said:

    tamoxifen
    sorry i just started tamoxifen a few months ago. don't know anyone else who has taken it

    Sorry...
    Have only been on it a month and so far no problems.
  • TraciInLA
    TraciInLA Member Posts: 1,994 Member
    #4
    Excellent idea
    Connie, this post is an excellent idea, and I'll be very interested in the responses as well (I've just started Tamoxifen).

    If you don't get a lot of responses to this, given the recent discussions about how there are just too many posts now for everyone to read, you might try reposting it with a really specific subject line, something like "Anyone taken Tamoxifen for years with no problems?"

    Just a suggestion -- you're so right, we all really need to hear the "boring" no-problem, I'm-fine stories!

    Traci
  • New Flower
    New Flower Member Posts: 4,294
    #5
    TraciInLA said:

    Excellent idea
    Connie, this post is an excellent idea, and I'll be very interested in the responses as well (I've just started Tamoxifen).

    If you don't get a lot of responses to this, given the recent discussions about how there are just too many posts now for everyone to read, you might try reposting it with a really specific subject line, something like "Anyone taken Tamoxifen for years with no problems?"

    Just a suggestion -- you're so right, we all really need to hear the "boring" no-problem, I'm-fine stories!

    Traci

    You should have side effects
    otherwise Tamoxifen is not working. Several side effects such as hot flashes, insomnia, joint pain and other are indicators that medication is working and blocking your estrogen and it feels as menopause.Eventually body should learn and becomes adapted to these new conditions and lack of estrogen would not cause problems. The scary part is rare 1-2% side effects such as blood clot and uterine cancer.

    I have been taking Tamoxifen for 9 months now. I felt awful for the first3 months, but little by little my body accented its new metabolic condition. As for rare side effects i under care of gynecologist and see him every 6 months.
  • mariam_11_09
    mariam_11_09 Member Posts: 691 Member
    #6
    Don't want to make you

    Don't want to make you scared just share a little information. I have been working with a Chinese Herbalist who has also studied western medicine. He said that because I have a liver condition as a result of Hepatitis C and Malaria, that I would not be a good candidate for Tamoxifen. Supposedly it can do a great deal of liver damange over a period of time sometimes just enough to make your life uncomfortable but not enough for Western medicine to be able to do anything about. For me, it turned out I was ER and PR negative but Her2 positive so I am off the hook there.

    I think you eat well, healthy at least and don't otherwise overtax your liver you might be alright with it.
  • Sher43009
    Sher43009 Member Posts: 602 Member
    #7
    Great post Connie. I'm due
    Great post Connie. I'm due to start Tamoxifen in Jan. after I'm done with rads and hope there are some people with mild side effects. I'd like to be one of them!!
  • cruf
    cruf Member Posts: 908
    #8
    Sher43009 said:

    Great post Connie. I'm due
    Great post Connie. I'm due to start Tamoxifen in Jan. after I'm done with rads and hope there are some people with mild side effects. I'd like to be one of them!!

    Tamoxifen
    I was on Tamoxifen for 5 years and the major side effect I had was hot flashes and I've been off it now for 4 years and still have them . I also had some vaginal discharge but other than that, no problem. I would do it again in a minute. BUT... you have to be vigilant in having regular GYN check ups and ultrasounds just in case there might be a problem. Now, ask about Femara and Aromasin, that's a whole different story and not a good one. Any questions. please feel free to IM me and I'll try to help you. HUGS!! Cathy
  • crselby
    crselby Member Posts: 441 Member
    #9
    for Miriam and New Flower
    Last week I specifically asked my med oncologist, "True or False, if you have no side effects, the Tamoxifen isn't working." The usually stoic man chuckled and said, "Absolutely false."

    RE: liver damage. At my first visit I talked about how I wanted to avoid taxing my liver with any further chemicals (medicines) if I didn't absolutely have to; therefore I was leaning toward not taking the Tamoxifen. He said Tamoxifen doesn't cause liver damage. However, a month later, at my visit last week, as I was getting dressed after the exam and my Q & A session, , he knocked on the door of the room to say that, at my next visit, he will draw blood for liver studies. How's that for confusing! I think I'll call his office today!
  • rrogers34
    rrogers34 Member Posts: 135
    #10
    Tomoxifen
    My mother had breast cancer back in 1990. She had a mastectomy, one dose of radiation and Tomoxifen for 5 years. She has had no problems and has been cancer free ever since. I just discovered I now have breast cancer and am having surgery on Wed. Lumpectomy. Dont know for sure yet about chemo, but I know radiation is a given. One thing I am finding out, is that every person is different. I hope I take after my mother in how her treatment has gone. I know a few others who had the same experience. Mastectomy, radiation, tamoxifen and no problems. My Mother was 54 at her diagnosis and I am 51. She was just beginning menopause, and I have not yet. I hear that tamoifen throws you into menopause. Hope this helps.
  • carkris
    carkris Member Posts: 4,553 Member
    #11
    rrogers34 said:

    Tomoxifen
    My mother had breast cancer back in 1990. She had a mastectomy, one dose of radiation and Tomoxifen for 5 years. She has had no problems and has been cancer free ever since. I just discovered I now have breast cancer and am having surgery on Wed. Lumpectomy. Dont know for sure yet about chemo, but I know radiation is a given. One thing I am finding out, is that every person is different. I hope I take after my mother in how her treatment has gone. I know a few others who had the same experience. Mastectomy, radiation, tamoxifen and no problems. My Mother was 54 at her diagnosis and I am 51. She was just beginning menopause, and I have not yet. I hear that tamoifen throws you into menopause. Hope this helps.

    My mom took tamoxifen after
    My mom took tamoxifen after radiation, and had hot flashes but nothing else. My friend did well on tamoxifen as well. I will start it in the new year. My freind said the tamoxifen made her periods shorter.

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