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Quitting Tamoxifen

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AmyA
AmyA Member Posts: 10

Hi ladies.

I'd love to know:

-How was going off Tamoxifen in general? Any side effects from Stopping?

-Has anyone quit after 5 years though Dr wanted you on for 10????

Tamoxifen has made me hold Immovable weight. I've been on for a little over 5 years and would love to ditch it - unless any of you have info of problems after quitting.

I look forward to any and all insights. All the best to everyone. Please stay safe and big digital hugs.

Thank you

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Comments

  • VioletKali
    VioletKali Member Posts: 97
    edited October 2020
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    I quit an AI and ovarian suppression after 6 ish months. I then declined further treatment.

    I felt so much better within 3 months.

  • AmyA
    AmyA Member Posts: 10
    edited October 2020
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    Thanks!👍❤️

  • Togethertolearn
    Togethertolearn Member Posts: 224
    edited October 2020
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    I tried tamoxifen twice. It made me very depressed, I also had anxiety attacks. So I do not take it.

  • kcat2013
    kcat2013 Member Posts: 53
    edited October 2020
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    I stopped Tamoxifen after 5 years. My doctor and I talked through specific pros and cons for me staying on it vs keeping going for another 5 years. Ultimately, he said it was my decision and he had no problem with me stopping it. I had pretty bad hair thinning, dry alligator skin, elevated blood sugar levels, amongst other things. I felt better within a month and continued to improve over the next 6 months or so. I'm 41, if that's of any relevance also!

  • edj3
    edj3 Member Posts: 1,579
    edited October 2020
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    Just a heads up that tamoxifen does take a while to leave your system, so don't be surprised if it takes several weeks to notice a difference. For me, it took six weeks.

  • peridot180
    peridot180 Member Posts: 71
    edited October 2020
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    AmyA - Congrats for making it 5 years on Tamoxifen. I want to give it up just after a year of being on it. I heard it can take some time to get out of your system. I quit Lupron due to awful side effects and I heard that takes weeks to months to get out of your system, though it depends on the person. These hormone drugs are tough to be on. I wish you the best with your decision. : )

  • dtad
    dtad Member Posts: 771
    edited October 2020
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    AmyA...I'm a little surprised your doc wants you to do 10 years with your stats. Not saying I know more than he/she does but maybe you should consider a second opinion. Remember increased weight increases your odds of recurrence too!

  • Togethertolearn
    Togethertolearn Member Posts: 224
    edited November 2020
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    I have tried to start my tamoxifen again and even with a dose here and there I'm much more shor tempered and anxious. It must just be super bad for my body.

  • jwoo
    jwoo Member Posts: 931
    edited November 2020
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    I took it for 7 years. I highly suggest weening off if you are sensitive to hormonal changes. I'm having a second puberty complete with multiple periods in a month and terrible acne.

  • bubblybubbles_1
    bubblybubbles_1 Member Posts: 10
    edited November 2020
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    I have no advice for you as I am on tamoxifen (37 years) and pre manoposal. I am 2 years in and 3 more years until I am off this awful medicine. It’s giving me weight gain , mood swings, depression, hot flashes. I was on gabapantene for hot flashes but I get constipated with it so ditched it.

    I wish you good luck. Let us know how it turns out for you

  • inkster
    inkster Member Posts: 27
    edited December 2020
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    Following. I took my last Tamoxifen pill yesterday and figured I was going to feel better like immediately (ah, wishful thinking). I've been doing some reading and it appears that it takes a few weeks for things to right themselves, but I'd also love to hear from others.

  • dawn913
    dawn913 Member Posts: 1
    edited December 2020
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    I'm having a really hard time on Tamoxifen. I'm barely to almost 2 years on it, probably more like 1.5 years. I'm 41 and feel 60. My hair is super thin, my facial skin now has that crepe paper texture, I only have 1 good week a month where I'm motivated and somewhat happy, I have zero interest in sex, my vagina is super dry. It just feels like no way to live. Yet the small chance I have 1 rogue microscopic cancer cell roaming around in there is reason enough to stay on it. But if I get hit by a bus tomorrow, I would tell you it wasn't worth it at all. My Dr wants me to stay on for 10 years. I'll basically be in menopause the rest of my life. Sorry all, I'm just feeling really sorry for myself and don't know if I should just get off it and improve quality of life. The idea of getting metastatic cancer is horrifying when I could possibly prevent it.

  • Togethertolearn
    Togethertolearn Member Posts: 224
    edited December 2020
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    dawn913 can I ask what your oncotypeis?

  • dillydilly
    dillydilly Member Posts: 2
    edited December 2020
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    Amy...what decision did you make and how are things going.

    I, too, am very close to stopping Tamoxifen. Very little quality of life. I can handle the hot flashes, the joint pain, headaches. not fun but bearable. It's the mental confusion, mood swings with crying and rage, depression, anxiety that just made me stay home from a family trip at the last minute knowing I would 100% ruin it. Trying to work but getting confused and overwhelmed with tasks I have done for the past 15 years with my eyes closed. When I have an exceptionally bad string of days, I am physically unable to put the pill in my mouth. After a couple moderately bad days, I wonder how much I will regret stopping if it has metastasized in a few years, so I gat back on it. I had Invasive Lobular, likely in my system 5 years before dx. Since lobular does not form lumps and rarely shows up on imaging, I worry a cell or 2 could have passed thru nodes leaving them clean. Had Double Mastectomy Feb 2018. They found another area of lobular cells, they never saw on scans. Surprise! Oncotype 15 (low happily). Family history with 1 of them passing from met BC to her brain. Also, has anyone tried cannabis for these horrible symptoms? Sorry, lots of questions. This is a rough road, I wish you all well.

  • salamandra
    salamandra Member Posts: 745
    edited December 2020
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    Hi dillydilly and others,

    I try not to be a broken record but I think this information isn't widely known so at the risk of being annoying I'll pipe in again.

    Toremifene is a SERM alternative to tamoxifen (ie, it does not require ovarian shut down) that has solid (albeit still developing) evidence of being non-inferior to tamoxifen for prevention of recurrence in premenopausal women and which tends to have a different side effect profile.

    The good: I could not tolerate tamoxifen (tried many different brands, doses, times of day, etc) and hated the idea of shutting down my ovaries and going with an AI, but also hated the idea of taking my chances without hormonal treatment. I knew there was a chance I'd have similar side effects on toremifene but I thought it was worth trying. In fact, I do still have some side effects but it is a whole different ball game and I am so grateful and relieved! Compared to tamoxifen, it has been so so so much better, and I can foresee taking it for 10 years, no problem.

    The catch(es): Toremifene is not FDA approved for prevention of recurrence for premenopausal women. It is much much more expensive, even the generic.

    The evidence: My doctor was concerned that there were not prospective studies on toremifene for premenopausal women preventing recurrence. I pointed out that there was also limited/no prospective studies on OS+AI for preventing recurrence in premenopausal women. Her response was that feels it is much more clinically familiar and even without proper studies, doctors would have a sense if it wasn't effective. I was like, hmm. Toremifene for premenopausal women is used much more widely in Asia, where the genetic variation that impedes tamoxifen processing is more prevalent in the population. All the retrospective studies show non-inferiority and presumably there is plenty of anecdotal clinical evidence being generated, just not in the USA. I also found western articles suggesting that toremifene is a viable alternative for women who are counter-indicated for tamoxifen (due to taking conflicting meds, etc.).

    My process: I am being treated at a major center that is pretty conservative and by-the-book, but I kept pushing my oncologist. Finally she consulted with others, including a senior oncologist in her department who ended up telling her that he had actually recommended to the FDA TO approve toremifene for premenopausal women. After that, she was willing to prescribe it for me, though she warned me that there might be issues with insurance coverage and to let her know and she would try to fight it.

    The money: Luckily, my insurance is covering it no problem (I don't know whether this is luck, or my paper trail of having tried 4 different brands over the course of the previous year may have helped). I since also found out that there is at least one medication assistance programs that could have brought the cost down to something like $50 per month if my insurance had not worked - so hopefully cost doesn't need to be an issue.

    TL;DR - I think it is at least worth considering toremifene and discussing with your doctor before abandoning hormonal therapy. It has literally made all the difference for me.

  • dillydilly
    dillydilly Member Posts: 2
    edited December 2020
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    Thanks Salamandra...I love your research & persistence. Same year as mastectomy, I had a full hysterectomy. So, I would not be considered "pre-men". Did you ever reduce your 20mg Tamoxifen when you were on it? I told my Onc about a "low dose" study, she was familiar with this but said it pertains to non-invasive, so not for me. When I told her I was starting to take 1/2 pill every other day, she said that was OK, she's was just happy I was still taking something. Tried the AI, but those were worse. Hopefully 75% dose may cut symptom severity. Thanks again for your reply.

  • msmpatty
    msmpatty Member Posts: 35
    edited December 2020
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    i hate to be the voice of doubt, but I would think very hard before stopping any hormone therapy before the recommended time frame. I did ten years of tamoxifen then letrozole and was deemed “cured" in May 2020. In October I was diagnosed with a 2nd primary cancer (not a recurrence or metastasis, a whole new cancer) in the opposite breast. It was found to be 100% estrogen positive! My oncologist surmised that it had grown since I stopped the hormonal treatment just five months prior. I'm doing radiation now but will return to letrozole when I am done. The plan is another 10 years. Frankly I would like to take it forever...side effects be damned.

    Patt

  • Beclyn20
    Beclyn20 Member Posts: 18
    edited December 2020
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    I declined Tamoxifen for myself basically because of the horror stories I had read online but if you do decide to stop please reach out to a Naturopathic doctor or do the research yourself. My doctor put me on natural supplements to support my detox pathways and rid body of excess estrogen. Happy Saturday to you all!


  • salamandra
    salamandra Member Posts: 745
    edited December 2020
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    Hi dillydilly,

    I tried going down to a lower dose. I tried 10mg (half a pill) per day and even 10mg every other day. But it didn't help with my worst side effect, which was basically excessive somnolence. I'd be able to stay up about 8-10 good hours any day. During that time, I was fine. But then I just needed so very much sleep, there wasn't any time to live. If toremifene hadn't worked out, my next thing was going to be to try to get the liquid tamoxifen in a 3mg dose and see whether - between the different format and the lower dose - I might be able to tolerate or build up.

    I do know other women from these boards who with or without doctor's blessings cut their tamoxifen down to 10mg per day or even 5mg per day, because they could live with that. My impression is that most oncologists are pretty conservative and few will give you their blessing if they think there's any chance at all they can get you on/convince you to choose a standard of treatment dose/drug. But once we make clear that it's 5/10mg or NOTHING, they are more willing to work with us and just put a note in our file covering their ass that they advised us of the risk and that what we're doing is probably better than nothing. That's sort of what happened with me with toremifene.

    When I first started treatment, my doctor offered me OS+AI because I was on wellbutrin, but basically made it sound terrible. So I decided to try switching my antidepressant and go with tamoxifen. When tamoxifen didn't work, I figured I would go without protection because of how awful she'd made OS+AI sound ('so drastic for a younger women! potential impact on bones and other side effects!). But then all of a sudden it was, 'well many women tolerate it well with few side effects, we'll monitor your bones, you can at least try it and if it's bad you don't have to keep going'. I was like, 'wait what'? When I told her I'd mentally prepared myself to forego all protection, she became somewhat more flexible.

    If you are not premenopausal, it may be easier for you to get the toremifene prescribed/covered! There are more studies on postmenopausal women.

    How did you end up on tamoxifen instead of an AI?

    Hi msmpatty,

    I hear you so strongly and I'm sorry you are speaking from the personal experience of dealing with recurrence!! I am thinking of going off hormonal therapy to try to have a child and that is so scary to me. Now that I've found a drug that works with quality of life - at least so far - part of me is wondering why even stop after ten years. It seems to me like what they have is absence of evidence for long term benefit, not evidence of absence. I totally see for someone struggling with side effects, it would make sense to go off after 5/10 years as a trade off. But for women for whom it is basically a sugar pill - why ever go off? I think you know by year 5 pretty well if it is causing you serious effects or not.

    I am curious if you ever had the test they give after five years (BCI) that predicts the benefit of hormonal therapy? (TBH I still don't understand why they wait five years to do it).

    Wishing you all the best for this new round of treatment!!

  • BCat40
    BCat40 Member Posts: 121
    edited December 2020
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    msmpatty, it seems pretty unlikely that a 2 cm new cancer would grow in only 5 months. It’s more likely it started growing while you were still on the meds. Don’t forget they are only 50% effective. You may want to look into trying a different med for this second round.

  • BCat40
    BCat40 Member Posts: 121
    edited December 2020
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    beclyn, me too! I am also working with a wholistic gyn on estrogen metabolism.

    Salamndra, there are possible long term toxicities to your organs from these drugs which is why being on forever it not recommended. Fatty liver, ocular damage, bone damage etc. I looked into Toremifene but was scared off because it has the same side effect profile as tamoxifen as far as uterus, eyes, liver etc. Apparently tamox and Toremifene can cause bone damage in premenopausal women, opposite effect than in post menopausal women.

  • Beclyn20
    Beclyn20 Member Posts: 18
    edited December 2020
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    BCat40... Hello there. Can you tell me what your Dr. has you on? I am on Calcium D glucarate, Sam-e, iodine, vitamin D and turmeric. Happy holidays!

  • BCat40
    BCat40 Member Posts: 121
    edited January 2021
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    Beclyn,

    I would have had Calcium d-glucarate but it could interfere with the metabolism of another drug in my liver, so instead I'm doing myo-inositol/d-chiro inositol blend and a topical compounded version of chrysin (it doesn't have good bioavailability through the intestines). I'm also on a probiotic--apparently gut health is very important to estrogen metabolism: https://chopra.com/articles/the-estrobolome-how-th...

    https://pubmed.ncbi.nlm.nih.gov/31847455/

    https://pubmed.ncbi.nlm.nih.gov/30981803/

    https://pubmed.ncbi.nlm.nih.gov/33287442/

    I was already on Vitamin D but she also has me taking a higher dose now.

  • Beclyn20
    Beclyn20 Member Posts: 18
    edited December 2020
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    Thanks BCat I too take a lot of probiotic. I will research what you are on. I also have myself on a liver support with milk thistle and B complex.Thanks for the links! My best to you!

  • inkster
    inkster Member Posts: 27
    edited January 2021
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    Update: After 5 years, I quit taking tamoxifen a month ago. Here's how my body has changed so far:

    • weight initially shot up, but is starting to go back down
    • skin is retaining more moisture
    • relatedly, currently sporting a breakout (ah, acne)
    • memory is improving
    • brain fog is lifting a bit
    • daytime hot flashes seem to happen less often, but the night ones are actually worse

    Looking forward to more changes (although the acne can stop now, please) and finding my new "normal." FWIW, my MO and I talked a long time about continuing for an additional 5 years. For me, the side effects were a beast and outweighed the additional benefits, but it is a decision I still worry about. Wishing you all the best of health.

  • mlenk7
    mlenk7 Member Posts: 2
    edited January 2021
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    hi Becklyn20 wondering what supplements you're taking? I was dx'd last month, stage1A, grade 2, ER/PR+ HER2-, sent node-, lumpectomy 2wks ago (haven't figured out how to get this info into my profile) Pretty sure don't want hormone blocking meds, interested in Indole 3 Carbinole, already on a plant based diet and taking mushroom extracts. Would love to hear what you and others are taking. thanks!

  • gb2115
    gb2115 Member Posts: 553
    edited January 2021
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    I am thinking of quitting tamoxifen at the 5 year mark. She wants me on it for 10, but said I could stop at 5 if I want to. I'm almost at the 4 year mark, and tamoxifen is slowly destroying my body. The dry mouth, muscle/tendon pain, hair loss, I can live with. Well, the muscle pain is hard. I feel like my body is just about to break all the time. My big problem---I'm 42 with the vagina apparently of an 80 year old. Severe atrophy (and some prolapse) to the point where we're considering the topical estrogen because nothing else--the nonhormonal products-- works. I just can't take it anymore. I got up from my desk at work the other day, and it felt like knives stabbing the entire area. I get wanting to prevent metastatic spread, I really do--I have a family member with it who is struggling mightily. I've seen what it does. But this atrophy is kicking my butt.

    I wish someone had warned me that survivorship would be worse than the actual initial treatments. Surgery and radiation were so hard, but at least there was an end point. I don't think I can have a knife-stabbing, withering away vagina that hurts when I walk and sit for the next 6 years. Because by then I'll probably be menopausal and then really in for a treat....

    I'm tired of being in pain, and tired of being uncomfortable. I'm tired of the pelvic PT telling me I need estrogen, but oncology telling me to be careful about estrogen. I'm tired of GYN saying "I'm sorry" with no suggestions or help. I'm tired that NED doesn't really mean squat for hormone positive cancers (especially with positive nodes). I hate that I have to pick between quality of life and preventing further cancer. Like if it comes back, it will be my fault because I could have taken the drugs. But I'm so uncomfortable. I don't know how to keep going on this medication. I think I can do another year, but not 6 more. Nope.



  • edwards750
    edwards750 Member Posts: 1,568
    edited January 2021
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    gb - I can relate to the side effects of taking Tamoxifen. Mine weren't as severe as yours but I still experienced constant pain esp in my joints.

    I was DX in 2011 with IDC, Stage 1b, Grade 1. I had a lumpectomy followed by 33 radiation treatments. Actually my oncologist started me on Arimidex but after one year she switched me to Tamoxifen because it attacks the bones and I was DX with osteoporosis.

    My MO told me if I continued taking it past 5 years it would put me at a possible risk of a blood clot. I had one in my leg when I was just 16 years old. So I quit taking it. What a world of difference it made for me.

    You have to consider your quality of life. While tamoxifen isn't a guarantee the cancer won't return it is kind of an extra insurance policy to me but it obviously comes with a downside like you are experiencing.

    Good luck!

    Diane

  • edwards750
    edwards750 Member Posts: 1,568
    edited January 2021
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    gb - I can relate to the side effects of taking Tamoxifen. Mine weren't as severe as yours but I still experienced constant pain esp in my joints.

    I was DX in 2011 with IDC, Stage 1b, Grade 1. I had a lumpectomy followed by 33 radiation treatments. Actually my oncologist started me on Arimidex but after one year she switched me to Tamoxifen because it attacks the bones and I was DX with osteoporosis.

    My MO told me if I continued taking it past 5 years it would put me at a possible risk of a blood clot. I had one in my leg when I was just 16 years old. So I quit taking it. What a works of difference it made for me.

    You have to consider your quality of life. While tamoxifen isn't a guarantee the cancer won't return it is kind of an extra insurance policy to me but it obviously comes with a downside like you are experiencing.

    Good luck!

    Diane

  • peregrinelady
    peregrinelady Member Posts: 416
    edited January 2021
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    For those ladies here debating the pros and cons of taking Tamoxifen for 10 years, have you asked your oncologist about the BCI test? It will give you information that tells you whether you would benefit from 5 more years and frankly I am surprised that more oncologists do not suggest it in your conversations. According to the site, most node negative women will not benefit from continued therapy and it may give you peace of mind to get that result. Mine came back high benefit so I am continuing on an AI even though I am tired of the side effects. The only caveat is that I believe this test is for node negative only. My report states that node positive patients will be considered high risk.

    My oncologist ordered the test immediately after diagnosis (it is supposed to be given after 5 years) even though I had micromets, so that may be why I came back high risk.

    Edited to add: I just looked up the BCI and it can be given to someone with 1-3 positive nodes.