• What was your worst side effect from taking Tamoxifen? n how did you cope with it?

    Asked by 3tykes on Friday, May 2, 2014

    What was your worst side effect from taking Tamoxifen? n how did you cope with it?

    I was wondering if those of you who are taking or have taken Tamoxifen could share what you felt was your worst side effect from it. I have this sad feeling that i cant seem to let go and have also started feeling that i'm in early menopause. Also feel like i'm gaining weight. I started taking Tamoxifen in December of 2013.

    24 Answers from the Community

    24 answers
    • dekdo's Avatar
      dekdo

      I have not had any side effects. Sorry I can't be of more help.

      about 5 years ago
    • Heather3's Avatar
      Heather3

      So far, it is joint pain. I find that it gets better as the day progressed. I have gained some weight but I am attributing that more to lack of going to the gym as frequently because of surgery. I was told the first months of tamoxifen are the worst, then it starts to even out and things get much better. Tell your concerns to your oncologist or even your gynecologist. They might be able to offer you some hope for brighter days ahead. All my best to you. Heather

      about 5 years ago
    • lilymadeline's Avatar
      lilymadeline

      Please don't be scared because this doesn't happen to everybody, but to answer you completely honestly the worst side effect that I got from Tamoxifen was uterine cancer...and a very aggressive kind as well. So obviously I needed surgery and chemo even though we caught it very early because I was having PET/CT scans every 3 months to monitor my stage IV breast cancer and it showed up on my scan. It isn't a bad idea at all to be scanned every 6 to 12 months if you are on Tamoxifen, especially if you are on it for over a year. But besides that I went into menopause, had tons of hot flashes, weight gain, depression, arthritis type symptoms which are all typical side effects of Tamoxifen and other hormone blockers as well...I think that uterine cancer seems to be only a SE of Tamoxifen but ask your oncologist because I am not actually 100% sure that other hormone blockers don't cause it too.
      I took Effexor when I was first put on Tamoxifen and that immediately took care of the hot flashes and the depression. A couple of Aleve every day and lots of exercise took care of the arthritis, the Aleve would help immediately but you do have to exercise as well regularly for awhile to completely get rid of the arthritis type symptoms. But please ask your oncologist for help! There is absolutely no reason to suffer while on Tamoxifen. But FYI- Effexor can cause weight gain as well, so I switched to another antidepressant Lexapro which worked better for the depression without any weight gain but not quite as well for the hot flashes. Oh well it was still a good trade off! But many antidepressants help with the hot flashes so don't be surprised if you have to try a few until you find the right one for you. I also switched hormone blockers of course. But please talk it over with your oncologist and get help with the SE. It is worth it because as bad as the SE are they are better than cancer! And easier to deal with than cancer! So yes I would do it again because now I am on 2 hormone blockers but my life is good and I feel great most of the time. This is a long answer.....but just don't forget to exercise, that is so important for depression, weight gain, and the arthritis. If you are anywhere near a cancer support community please check out their free exercise classes because they always seem to have something for everybody from dance to yoga and all the classes are fun and geared towards cancer patients in treatment. Good luck to you and God bless!

      about 5 years ago
    • junie1's Avatar
      junie1

      20+ yrs ago,, i had a lumpectomy, did the chemo, radiation, then was put on Tamoxifen for 5 yrs.
      During my chemo treatments,, i went thur the menopause,,( I was still having monthly periods, till i had my 2nd chemo treatment, then Bamm! no more periods),,So,, while i was on the Tamoxifen,, the side effects i did have,, little weight gain,( was working full time at a grocery store on the stock crew, unloading trks, stocking shelves,,,,lots of exericise there).. i had already had the mood swings from the early menopause thing,, I did experience a redness in the legs,, but it went away within a few days,, So, weight gain, mood swings,, guess those were the worst side effects for me,, nothing that i couldn't handle,, I was not put on any medication for the menopause,, the doctors did not want any cancer showing up any place else,, now i'm 20+ yrs a survivor,, and glad of it..
      Tell your doctors of any,, and yes any questions you have or any concerns..

      about 5 years ago
    • ChildOfGod4570's Avatar
      ChildOfGod4570

      For me, the monthly cycles stopped while I was on chemo, and the hot flashes began months before I started Tamoxifen; therefore, I don't know if the hot flashes and no more cycles can be attributed to the aforementioned drug. What I did notice more since I started taking Tamoxifen was breaking out in heat rashes on my limbs whenever I sweat, weight gain especially in my middle, and more gassy episodes than I used to have. My gyn said I could go on an anti-depressant for the SE, but I felt creepy about taking more drugs, especially since I'm so sensitive to medications to begin with. It doesn't help that I don't want to gain even more weight, and I've seen what anti-depressants did to a lady who used to attend our church, something that put me off the possibility of taking any anti-depression or anti-anxiety meds. The gyn said to let my oncologist know if I change my mind and want the pills. I told her I really wanted to try what I have been doing, which is consuming copious amounts of ice water and eating ice chips after the drinks are gone. One comfort my gyn provided was the hot flashes would get better with time. I also have a large fan set up to blow on me when I work out to minimize the appearance of the heat rashes, and I will also work out in the pool as soon as it becomes available to me again. We're having heavy rains here and will probably have them through the weekend. Anyway, that's how I deal with the SE I am experiencing. HUGS and God bless!

      about 5 years ago
    • ChildOfGod4570's Avatar
      ChildOfGod4570

      PS Oops, I forgot the aching in my fingers and knees, but this only happens when I get up in the morning and goes away after a minhute or two. Plus it doesn't happen every day, so I often forget about it, unlike the hot flashes, weight gain and ... ahem other aforementioned SE. HUGS and God bless!

      about 5 years ago
    • gillmomof3's Avatar
      gillmomof3

      I've been on Tamoxifen since December 2013 and the only side effects I had were early menopause,hot flashes and some depression. Every thing was manageable.

      about 5 years ago
    • catwrites1's Avatar
      catwrites1

      I'm 7 mos on Tamoxifen. I was just through menopause, so another round of hot flashes are not fun, but not terrible either. No joint pain. No weight gain (but I exercise regularly now.) The mood swings bother me the most, but they are not as prominent as the first couple months. I too wanted to avoid anti-depressants, so I finally made my way to the cancer center staff , and am meeting regularly with the counselor, at least to get me through my post trauma feelings. Hang in there.

      about 5 years ago
    • Jfed's Avatar
      Jfed

      Finished 2 years on Tamoxifen in January. Biggest issue was weight gain, even though I was much more physically active than prior to taking it. Finally got my MD to switch me to Anastrozole.
      After doing research, I wish I had been put on Anastrozole for the entire 5 years, but even that has some pretty good side effects. I find that the hot flashes are much more intense, but there are fewer of them. I also have some joint pain that I didn't have before. The good news is that I am finally staring to lose some of the weight that I gained. I also feel that I have fewer episodes of slight depression than when on Tamoxifen.

      about 5 years ago
    • sheri56's Avatar
      sheri56

      Been on tamoxifen for 3 years. At first the hot flashes were pretty bothersome. Other than that, I haven't experienced any side effects. Other the comfort it provides knowing I am doing all I can to prevent a recurrence of this nasty disease.

      Good luck!

      about 5 years ago
    • peachpoppy's Avatar
      peachpoppy

      I'm only 2 months into it, but have just started noticing that any time I move around and get hot my whole body, arms mostly, get really itchy. I have also noticed the start of hot flashes, mostly at night, but that started happening during chemo when my periods stopped. The flashes have gotten more noticeable in the last 2 months, but may be due to start of menopause not necessarily the tamoxifen.

      about 5 years ago
    • ChildOfGod4570's Avatar
      ChildOfGod4570

      Peachpoppy, it sounds like you are having the same issue I am with heat rash. Does the itching go away once you stop sweating or cool down? Of so, some ways of relieving it include splashing cool water on your arms, getting in front of a fan, consuming ice cold dreins. At least that's what I do. HTH and God bless!

      about 5 years ago
    • monamo's Avatar
      monamo

      Doc and I will be having hormone therapy conversation on the 13th so I'm also very curious about these answers. I'm not interested in taking another med to counter the effect of the first so does anyone have any natural tips and tricks of dealing with SE? Any tips for the hubbies involved? Thanks and good luck and God bless to all of us as we walk this path!

      about 5 years ago
    • lilymadeline's Avatar
      lilymadeline

      I just wanted to comment to Monamo about natural cures. I did try black cohosh for the hot flashes and it worked almost immediately and very well, as well as the Effexor did. BUT my tumor counts skyrocketed while I was taking it! So needless to say I went off of it and back on another antidepressant. I did ask my oncologist about the black cohosh before I took it and he though I could try it but needless to say he felt awful that it caused my estrogen positive breast cancer to flare up so severely. I have read that black cohosh is not safe for breast cancer patients and unfortunately in my case that was very true. I was just kind of desperate because I wanted to go the natural route, oh well! Anyway I wanted to pass this on to you, in case you want to try it as well. It did take me awhile but I actually feel very good now and I am on Arimidex and the injectable hormone blocker as well which I still can't spell. ;-)

      about 5 years ago
    • cheygrl's Avatar
      cheygrl

      I've been feeling very sad lately too. I was thrown into menopause after my 2nd chemo treatment last Sept. Just starting taking Tamoxifen in March. Have noticed a little weight gain, but I know it's due to lack of exercise! Going to talk to doc about the depression.

      about 5 years ago
    • dianalynn's Avatar
      dianalynn

      I developed excrutiating joint pain pain in my jaw as well as sexual dysfunction.

      about 5 years ago
    • lorilaa's Avatar
      lorilaa

      Tamoxifen made my whole body ache. Joints hurt and my legs hurt all the time. I broke out in rashes on my arms and legs. And I felt just like I was sick with the flu. I stuck it out for two months and I quit taking it. The sides effects hit me hard and I was miserably sick every day. Not everyone has this problem. I have talked to a few people that had no problem at all with it.

      about 5 years ago
    • 3tykes' Avatar
      3tykes

      Thank you all for sharing your experiences....it's nice to know that someone else out there understands how i feel!

      about 5 years ago
    • tam4givin's Avatar
      tam4givin

      Did you get blood test to see if you can metabolize the Tomoxifen (and antidepressants , pain meds, and other meds?) If your doc says it will still work do the research. Tomoxifen in some studies causes a worse kind of cancer!

      about 5 years ago
    • peachpoppy's Avatar
      peachpoppy

      @ChildOfGod4570 - yes, i read what you said about your heat rash and thought it was very similar to what I'm experiencing. I don't have any visible rash though. Just the itchy sensation. And yes, it does go away when I cool down. With summer coming this should be interesting.

      about 5 years ago
    • 3tykes' Avatar
      3tykes

      Thank u tam4givin, i will talk to my oncologist and see what she says. This whole thing is very scary....taking something that causes cancer just to try to stop another type of cancer...

      about 5 years ago
    • tam4givin's Avatar
      tam4givin

      I have found that a lot of oncologists are way behind in studying. They do not have time. They go to the big conference in CA every few years or when they can and then rely on that information. Guess who is paying for those conferences! Mine had never herd of the studies that show Tamoxofen could cause a worse more aggressive breast cancer. She had never ordered the metabolizing gene blood test until I kept insisting. The 2 tests that suggests Tamoxifen would reduce my chances by a whopping 5% are out dated. One was done on all post menopausal woman (I am not.) and the other one some of the people in the study used Tamoxifin, some used other drugs. My hot flashes and joint pain are unbearable now and she wants to add that poison! I said no. And have to keep saying no. She had all my doctors try to talk me into it, and a "nurse navigator" who has been no help at all, just wastes my time and makes me aggravated, even lied saying she talked to my liver doc and confirmed I should take it. My liver doc said she never talked to her. Do they honestly believe Tamoxifin is a miracle drug worth all those side effects? Or have other reasons to push it!

      about 5 years ago
    • KLC's Avatar
      KLC
      about 5 years ago
    • Genie's Avatar
      Genie

      It was/is hard to distinguish what drugs were causing what side effects, but I took Tamoxifen for only about a year. I was so sick, body aches, joint pain, weakness, that my doc suggested I go off of it for two months to see how I felt. I did feel better. But what surprised me was how much my mood was affected. I was feeling so much anxiety, depression and moody, I attributed it to the stress of having cancer, going through surgeries and chemo. However, when I stopped the Tamoxifen, I began to feel much more like myself. I never even thought it would be the drug. Everyone is affected differently. My mother took Tamoxifen for 8 years and had no side effects. That was over 25 years ago. She is now nearing 90 and cancer free!

      about 5 years ago

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