Consider coming off Tamoxifen

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have2laugh
have2laugh Member Posts: 132
edited January 2016 in Hormonal Therapy - Before, During, and After

So I was one of those people who was afraid to start Tamoxifen but forged ahead on a month by month basis and was easier than I thought it would be until recently. I am finding myself feeling anxious and moody, fatigued. Definitely not myself. I thought this was just a result of an extremely busy schedule at work, grad school and family but even with a break in my routine, I can't shake this edginess. It has been a year and a half since I started Tamoxifen with some mild physical effects but uterine effects have resolved, no issues sexually, no hot flashes, maybe few night sweats. I am 45 and still completely regular cycles. I have strong family history and I really wanted to stick this out but I am considering a trial off to see if these symptoms improve. One of my sisters also came off Tamoxifen just shy of two years for similar issues. I am very conflicted for my husband who lost his mom to breast cancer and for my littlest who is five, I would like to decrease my risks any way I can but I also want to give them my best self which I don't feel I am. I am not totally opposed to taking something for symptoms but just not sure I wouldn't be better to give my body a break and get back to exercise and taking time to eat better. Any input from those who stopped Tamoxifen for similar reasons or those who stayed on and dealt with similar issues. I have read the research looking for personal experiences. Thanks

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  • Piscean
    Piscean Member Posts: 50
    edited December 2015

    Hi have2laugh,

    I stopped taking Tamoxifen a few weeks ago and am pleased to report that my side effects have diminished. I haven't yet told my oncologist or my family. I feel a bit guilty for stopping it, but with a low Oncotype DX score, I think it's worth the risk. I'm feeling better and better with each passing week.

    I wish you clarity with your decision and best of luck!



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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2015

    Have2laugh----if you have been on tamoxifen for 1.5 years already and these issues ( fatigue, anxiety and moodiness) just started recently, it is highly unlikely they are SEs from the tamox. (most SEs from tamox are generally noticed much more quickly than that). It sounds like it is much more likely from the stress of your "extremely busy schedule from work, grad school and family". Try to hang in there if you can. We can all benefit from increased exercise and more healthy eating habits. I

    anne

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  • have2laugh
    have2laugh Member Posts: 132
    edited December 2015

    Thanks for your replies. I did see MO today for scheduled visit and discussed taking a break, symptoms. One thing I did recognize is the brand of Tamoxifen I have been on changed two-three months ago and is from a different manufacturer than I previously was on. Not out of the realm of possibility that this could have some impact. Will stay off for 30 days and restart again with no generics written and check in with MO again 6 weeks after restart. Will give me a chance to see if symptoms improve or stay the same. She really wants me to try and stay on-disappointing after doing well this long. Hopefully, combo of circumstances and maybe subtle change in ingredients. Will see how next month goes.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2015

    Piscean, the low Oncotype score is, I believe from reading other posts over time, based on taking Tamox or Arimidex. If that information is correct then the risk would not be the same as if you are not taking them. Just FYI, not to have you worry or change your mind as it is your decision we support.

    Have2laugh, seems I also read (yeah, maybe I've been on these boards too long) that those issues you report could also be related to the thyroid and not Tamox? But, absolutely, different manufacturers product because of different fillers can make a difference.

    Anycase, wishing the best for both of you on this journey.

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  • have2laugh
    have2laugh Member Posts: 132
    edited December 2015

    Piscean- thanks for your honesty. We all have to make choices that are difficult. I am very comfortable speaking to my MO- she sees the value in Tamoxifen but was more than willing to try a break and see if there were any changes. Only a few days off and rushing into Christmas but so far so good, time will tell.

    Thanks Patoo-not thyroid all results normal. I'm an RN and I have worked in critical care area almost 20 years-physical reactions to 'normal' stress different last few months. Hoping just combination of different brand Tamoxifen and my body screaming for me to slow down. I am listening and working on more manageable schedule. Our bodies react differently at times to medications we may have taken for some time or have taken before without any issues.

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  • have2laugh
    have2laugh Member Posts: 132
    edited January 2016

    Just wanted to update- Oh my gosh- I do feel great! Had forgotten how nice it was not to wake up from night sweats! Never hot flashes during day but regularly woke up with clothes and hair wet. Not missing that! Mood wise I feel great but I have also taken steps to become more organized and slow down plus I am on break from classes. Determined to make health and family time priority in 2016. After discussing with husband and thinking about it I am going to stick with plan to restart Tamoxifen and stick to one brand. Hopefully will find balance.


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  • shelleym1
    shelleym1 Member Posts: 298
    edited January 2016

    Did you have any withdrawal symptoms coming off of it? I tolerated Tamoxifen well until I hit around the 6 month mark. Like you the anxiety and mood issues hit me hard. I was also going through a stressful time so I don't know if the Tamox causes the anxiety or makes us more sensitive to stress. I am glad you are feeling better. I asked my oncologist for a break and restart and she said no.

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  • Ado
    Ado Member Posts: 89
    edited January 2016

    I took Tamoxifen for five years. Hot flushes and weight gain followed. Took Venlafaxine for the flushes it is also an anti anxiety drug so kept me happy. Difficult withdrawal from the latter but no withdrawal problems with Tamoxifen. Stopped six months ago feel great lost a stone having also increased exercise. I really do not want to take any more pills but Letrazole has been prescribed. Just don't know whether to take it

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  • ruffy
    ruffy Member Posts: 141
    edited January 2016

    i just started letrazole after taking a month long break from tamoxifen. i finished 4 years and 2 months of tamoxifen. i did struggle emotionally on it and my counsellor said that was normal for some people. finally oncologist suggested a break and omg, i felt so normal. everyone noticed it and i felt great. needless to say the recommendation of 10 years on these types of pills was given to me and letrazole prescribed for the next 6 years. I only started it about 4 days ago and am hoping for the best. and while i feel very blessed to have these options available to us i do find these medications very difficult. :(

    as far as any withdrawls from tamoxifen i didn't notice any at all. :)

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  • JJOntario
    JJOntario Member Posts: 356
    edited January 2016

    I took a 6 week break with much guilt mainly because the tailbone pain I get is crazy painful. I seen my MO this week who isn't convinced that it is a SE. I'm also going for an US tomorrow for something on my ovary (cyst??). Is this a coincidence too? I started back on Tamoxifen this week. I initially thought I was one of the lucky ones as I breezed through the first 6 months relatively easy.

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited January 2016

    I have been off Tamoxifen since the beginning of December. I was greatly affected by SEs. Terrible hot flashes, night sweats, and the mood issues brought me to my knees. Vaguely suicidal, but without the energy to get out of bed to do anything about it.

    I might have slogged through for longer (I had only started August 1) but my liver enzymes quintupled in 4 months. So Mo took me off. They are watching for enzymes to come down now, as there were no other changes to meds or lifestyle. Enzymes were good all through chemo and for months after.

    The plan is to go to an AI. I wasn't quite through menopause according to the estradiol tests last year, but now they are in range for safe taking of an AI. I am feeling guilty being off with no protection right now, and very fearful that the mood issues will affect me the same with an AI, since it is the lack of estrogen that is thought to cause these mood issues with both classes of drugs. My Onco score was on the high side, (and assumes 5 yrs of Tamox) so all of this is so upsetting. I honestly don't think I could last ten years how I was feeling before,. I have another condition which prevents taking an anti-depressant. So hoping for the best. Prepared for the worst. Some tough decisions may be ahead.

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  • gentianviolet
    gentianviolet Member Posts: 316
    edited January 2016

    I was on tamoxifen for 4.5 years. First 2 years were unsettling only because I had hot flashes again (was 70 when I was put on T), minor joint problems, fatigue, and lost brains. By year 3 I began to have horrible hip problems, both hips but particularly in the left hip. Began limping and all docs said, "Well, it's your age and not the meds". Went to physical therapy and deep tissue massage and nothing really helped. Finally after limping for 1.5 years I decided to go off and find out if it was the tamoxifen or if this was the new me. After about 3 months I ended up with no more hip pain and now walk normally. Ha! And so many docs told me it wasn't the tamoxifen.

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  • djhead4
    djhead4 Member Posts: 2
    edited January 2016

    I started 20 mg of tamoxifen once daily about 15 months ago. While there was some nausea for the first few months it was manageable and I actually lost some weight. However, starting last summer, it seems like I am always tired and I have been been getting sick very frequently which is not normal for me. When I get sick I am totally down. These episodes seem to be getting more severe and more often. Has anyone else experienced something like this? Because I was only LCIS, I only see the breast cancer doctor once a year. I tried to ask about the fatigue and vomiting in September when I saw her but was told that it wasn't being caused by the tomoxifen. I am seeing my family doctor this next week because I can't cope with these symptoms.

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  • Moderators
    Moderators Member Posts: 25,912
    edited January 2016

    Dear djhead4, Welcome to the community. We are glad that you reached out here and that you also scheduled an appointment with your doctor. It sounds like your symptoms have been rough. While you are waiting for some responses here, consider visiting this page on Tamoxifen Side Effects for more information. Keep us posted on what you learn at your appointment. The Mods

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  • CidneyI
    CidneyI Member Posts: 79
    edited January 2016

    I have secretly stopped taking my Tamo after being on it since Nov 2014. I am tired of all the side effects. The chronic constipation is so bad that nothing is working any more and I have tried it all except for an enema. My eyes became so red and irritated all the time to the point I am now on a special eye drops after seeing 3 different doctors. I go from freezing to broiling at anytime of the day and night. The weight gain was really pissing me off - I am on a low cal, low carb diet under a wellness dr care. I got of the Effexor, hated the way it made me feel too. I haven't taken my Tamo in about a week or so and I feel like my regular self. I feel great. I haven't told a single person I haven't been taking the Tamo. I go see my onolcogist next month, I am sure he is going to none too pleased. I am not sure what I am going to do.

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