Tamoxifen.....devil or healer?? I need advice...

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Minka
Minka Member Posts: 29
in Breast Cancer #1
Hi everyone,
I haven't been on in quite a while....returned to work and I'm exhausted all the time. July 21 I will be one year without the deadly boob that was trying to kill me. Here's my problem, and I know that a lot of you have gone through it...so advice please? I've been on Tamoxifen for 10 months. My oncotype DX score was '0', so no radiation, no chemo. I had stage 2 both invasive and non-invasive cancers in the left breast so had complete mastectomy of that breast...the surgeon would NOT remove the right one. I am miserable. I walk with a limp now, when I can walk, my joints hurt all the time, I'm not sleeping well, and I stay depressed. I'm taking the Tamoxifen because my sons have asked me to (they're adults), but.....I have little quality of life. Anyone who has stopped it part way through? Anyone who stuck it out? I see my onco on August 2 and want to have made a decision by then...thanks in advance...
Minka

Comments

  • DianeBC
    DianeBC Member Posts: 3,881 Member
    #2
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    I know you will make the
    I know you will make the right decision for yourself Minka, whether you stay on tamox or get off. Perhaps one of the A's would be easier on you. Talk to your onco about them.


    Good luck!
  • kellyk123
    kellyk123 Member Posts: 23
    #3
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    Hi Minka,I went off
    Hi Minka,

    I went off Tamoxifen last summer after being on for a total of 1 year. I got very depressed and had no energy as well. I also had thickening of my uterus ( a side effect) which can increase your chances of uterine cancer. I have a thread going on here talking more about what I went through and also advice from others who posted in response to me. The bottom line is that you need to do what's best from you. I heard both positive and negative. They can put you on an anti-depressant while you stay on the tamoxifen too. I chose to go off because my quality of life was miserable, but that was what I chose and some people adjust and tolerate it fine. I don't know if this helps or not. I did feel a lot of guilt for going off but feel we all need to look within and do what works for us physically and mentally. Here is the link to the thread I started last summer when I was stressing over this same decision. http://csn.cancer.org/node/220105
    "Quitting Tamoxifen"
    Good luck :-))
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #4
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    we all have to do what is
    we all have to do what is best for US of course...here is what I posted earlier to another comment..I was taken off tamoxifen for about 3-4 mths and back on after surgery


    For most part I did not have any side effects (noticable)-my Oncologist insisted my my OB fo regular internal (not sure of name) ultra sound/ followed by D & C each time for thickening of the uterus. I am happy she instisted-since I did have that side effect. about 3 1/2 yrs of tamoxifen I had total Hysterctomy! All well now...i have 14 more mths of tamoxifen.

    Denise
  • Megan M
    Megan M Member Posts: 3,000
    #5
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    kellyk123 said:

    Hi Minka,I went off
    Hi Minka,

    I went off Tamoxifen last summer after being on for a total of 1 year. I got very depressed and had no energy as well. I also had thickening of my uterus ( a side effect) which can increase your chances of uterine cancer. I have a thread going on here talking more about what I went through and also advice from others who posted in response to me. The bottom line is that you need to do what's best from you. I heard both positive and negative. They can put you on an anti-depressant while you stay on the tamoxifen too. I chose to go off because my quality of life was miserable, but that was what I chose and some people adjust and tolerate it fine. I don't know if this helps or not. I did feel a lot of guilt for going off but feel we all need to look within and do what works for us physically and mentally. Here is the link to the thread I started last summer when I was stressing over this same decision. http://csn.cancer.org/node/220105
    "Quitting Tamoxifen"
    Good luck :-))

    I've read where some pink
    I've read where some pink sisters have taken a break from tamox and then got back on it. It might be worth asking your doctor if you could do that, just to see if you feel any better.

    Good luck!
  • LoveBabyJesus
    LoveBabyJesus Member Posts: 1,679 Member
    #6
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    Perosnal
    Hi Minka -- This is a very personal decision only you can make. I started taking tamoxifen last Aug. (2011) and it wasn't easy at first. It took me about three months to finally get used to it (had depression). Now I am doing much better (thank God).

    Personally, I would be afraid to stop taking it. My tumor was 99% estrogen so if there is something that can help my situation, I would take it - no questions asked. Unless the side effects became soooo intolerable that I couldn't have quality life often. Then I would reconsider. But as of now, I'm OK with taking it. You have to measure the benefits it gives you vs. the quality of life. Then you can make a decision. Living a good life is also important so you have the right to choose.

    Good luck. And may your see the light to make the right decision.
  • SIROD
    SIROD Member Posts: 2,194 Member
    #7
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    Joint Pain
    Dear Minka,

    I am so sorry that after a year you feel that you have no quality of life.

    Since you have had invasive cancer as well as the non-invasive one, Tamoxifen does give you an edge in keeping from having a recurrence. Even that is not a guarantee, as I did Tamoxifen for 4 years and am now stage IV.

    If you are post-menopausal you could try an aromatase inhibitor. I didn't experience stiffness or bone pain on Arimidex, but did have it on Femara. Even though the first time on Faslodex (250 mg) I didn't experience bone or joint pain, I do now on with the same drug at 500 mg. just a few years later. I wish that I could offer up a remedy for joint pain but I don't really have one. Some women have tried glucosamine & chondroitin with success.

    Wishing you the best with your decision.

    Doris
  • Warrior64
    Warrior64 Member Posts: 1
    #8
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    kellyk123 said:

    Hi Minka,I went off
    Hi Minka,

    I went off Tamoxifen last summer after being on for a total of 1 year. I got very depressed and had no energy as well. I also had thickening of my uterus ( a side effect) which can increase your chances of uterine cancer. I have a thread going on here talking more about what I went through and also advice from others who posted in response to me. The bottom line is that you need to do what's best from you. I heard both positive and negative. They can put you on an anti-depressant while you stay on the tamoxifen too. I chose to go off because my quality of life was miserable, but that was what I chose and some people adjust and tolerate it fine. I don't know if this helps or not. I did feel a lot of guilt for going off but feel we all need to look within and do what works for us physically and mentally. Here is the link to the thread I started last summer when I was stressing over this same decision. http://csn.cancer.org/node/220105
    "Quitting Tamoxifen"
    Good luck :-))

    tamoxifen
    My life has been hell since taking tamoxifen. No energy, weight gain, and now I have thickening of my uterine wall for which I will be getting a biopsy on Monday. I finally stopped taking that drug. After my chemo and radiation, I asked for a hysterectomy. My former oncologist gave no merit to my feelings and research on this issue. I should have left his practice then. Maybe I would not be going through this now if I had stood my ground. Regardless of the results of this biopsy, I am going to get the hysterectomy.
  • Lynn Smith
    Lynn Smith Member Posts: 1,264 Member
    #9
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    SIROD said:

    Joint Pain
    Dear Minka,

    I am so sorry that after a year you feel that you have no quality of life.

    Since you have had invasive cancer as well as the non-invasive one, Tamoxifen does give you an edge in keeping from having a recurrence. Even that is not a guarantee, as I did Tamoxifen for 4 years and am now stage IV.

    If you are post-menopausal you could try an aromatase inhibitor. I didn't experience stiffness or bone pain on Arimidex, but did have it on Femara. Even though the first time on Faslodex (250 mg) I didn't experience bone or joint pain, I do now on with the same drug at 500 mg. just a few years later. I wish that I could offer up a remedy for joint pain but I don't really have one. Some women have tried glucosamine & chondroitin with success.

    Wishing you the best with your decision.

    Doris

    I take tamoxifin
    I take tamoxfin and so far no serious side effects.Not like some that could've happened.I worried to even start it.Afraid my heart would act up, I would have breathing problems or many other side effects or serious reactions.I had my husband take me a ride to calm my nerves for such a drug that had so many reactions.I did OK.I'm still on it for 2 1/2 years but I do have some memory problems.The good thing I had a total hysterectomy at 48 so that wasn't a problem with my uterus.I made that total hysteroctomy decision thinking I could get cancer in my ovaries. I'm happy for that because I see so many on here who've had female problems taking tamox.My doctor even mentioned to me the hysteroctomy was a plus since uterine cancer and other problems can happen while on tamoxifin.

    I hope I can hold out on tamox 2 1/2 more years.My doctor pretty much told me it will help from other cancers developing.I have to go along with that.My friend is a 18 year survivor and took tamox and another drug for 10 years.5 years for each one.She says bring on another and she is one who like me hates taking pills.

    The one thing I regret is I forget the tamox at times.That is a worry because I can't go back and know how many I missed.I just have to pray what I did take works.It isn't alot but I prefer if I never missed any. If my doctor says there is another pill after tamox I will take it like my friend.She was Stage 3 and I was Stage 0. Still i will go with something else if I need to.

    Lynn Smith
  • sdukowitz
    sdukowitz Member Posts: 250
    #10
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    Ive been on it for 7 months
    Ive been on it for 7 months ...at first I had leg cramps, then they went away after the first month .... then I had hives for a few weeks and now it is mainly joint pain and hot flashes at night I am going to ask about the smaller dose ..... I found that walking or swimming on a regular basis helps but 5 years is a long time so ask about other alternatives good luck and hope you are feeling better soon ... sue d
  • EveningStar2
    EveningStar2 Member Posts: 491 Member
    #11
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    my story
    I had a lumpectomy for DCIS in Jan 2009 followed by rads and tamoxifen-started in April. In November 2009 I had a pulmonary embolism shower that all the doctors felt was caused by the tamoxifen. I had leg cramps and hot flashes on the tamoxifen which were slightly better when I divided the dosage. After the PE, my oncologist said she didn't want me in the same room as tamoxifen so I stopped it. April 2012 a reoccurance of DCIS. But is it just a continuation? My doctor thinks maybe. I don't know, I'm having a bilateral Monday and I HOPE I'm done with this.

    You will decide what is right for you. Good Luck.

    Maureen
  • NancyJac
    NancyJac Member Posts: 91
    #12
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    Hi Minka,
    I took 5 years of
    Hi Minka,

    I took 5 years of Tamoxifen almost 20 years ago. My concern is that most of the symptoms you describe (walking with a limp, joint pain, insomnia, depression) are not common side effects of Tamoxifen. So my concern would be that you could stop taking Tamoxifen but still have all those symptoms because they are being caused by something else. I would recommend making any decision before seeing your onc. This is something you need to discuss with him/her and find out what is causing your symptoms before you can make an informed decision about whether or not to continue taking tamoxifen.
  • Alexis F
    Alexis F Member Posts: 3,598
    #13
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    LoveBabyJesus said:

    Perosnal
    Hi Minka -- This is a very personal decision only you can make. I started taking tamoxifen last Aug. (2011) and it wasn't easy at first. It took me about three months to finally get used to it (had depression). Now I am doing much better (thank God).

    Personally, I would be afraid to stop taking it. My tumor was 99% estrogen so if there is something that can help my situation, I would take it - no questions asked. Unless the side effects became soooo intolerable that I couldn't have quality life often. Then I would reconsider. But as of now, I'm OK with taking it. You have to measure the benefits it gives you vs. the quality of life. Then you can make a decision. Living a good life is also important so you have the right to choose.

    Good luck. And may your see the light to make the right decision.

    Wishing you the best in
    Wishing you the best in whatever you should decide Minka!


    Hugs, Lex
  • Faith1122
    Faith1122 Member Posts: 46
    #14
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    Tamoxifen
    Hi Minka! I was diagnosed as minimal stage 1. 70% non invasive DCIS with 30% invasive. I opted for a double mastectomy because of family history. I am having my exchange surgery on Tues. I was lucky enough to not need any rads or chemo but my onc has recommended tamoxifen. I still have the script on my fridge because I have not filled it yet. I am terrified. Mostly of the emotional side affects. I had a hysterectomy a little over 1 year ago but kept my ovaries because they were healthy & did not want to go into early menopause. I have a 4 & a 7 year old & I have been moody enough dealing with cancer plus a few other health issues & I do not want their childhood memories filled with a sad mom. On the other hand a sad mom is better then a sick mom? I will try after this surgery. My onc told me he would be ok if I decided not to take it. Do what you feel is right in your heart & keep us posted. I will be interested in what you decide.

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