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Anyone have a good (or at least OK) experience with Tamoxifen?

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I have been reading through this forum, getting sucked down the rabbit hole of too much information, and so much of it scares me! I finally have my tamoxifen sitting on the counter, where it has been for a few days. I have not taken it yet. I came to this forum hoping for some reassurance, but it seems that most of the people who post comments are doing so because they've had negative experiences. Is this because most people have a bad time with Tamoxifen? Or because those who do are more likely to come here to vent or seek advice?

I feel like I've had a very good attitude ever since diagnosis. Surgery didn't scare me, radiation didn't scare me, and I had an easy time with both. Tamoxifen, however, makes me queasy to even think about. I know I need to just start and then deal with side effects as they come up. However, a few weeks out from radiation I finally feel so normal, back to myself, energy level is back to normal, I just really don't want to mess with that . . . but I have to.

So, I am hoping to hear from some people who will just tell me that it's possible to have minimal side effects, and that those you have can be manageable. My MO said that about 50% of the women he put on Tamoxifen have hot flashes and no other side effects, but that has not really made me more confident.

I feel so bad for those of you who are finding hormonal therapy worse than any other part of cancer treatment, and I so much don't want to be in that group.

I'm ready for a pep talk if anyone has a good one!

Thanks,

Rachel

Comments

  • dmg77
    dmg77 Member Posts: 7
    edited January 2021
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    Rachel , My reaction to hormone therapy is mixed feeling. All my life ( almost 59 years ) was super healthy person.

    But cancer showed up . Had great attitude. Went through chemo , bi mastectomy, radiation and 6 rounds of chemo

    Pills. Kept working out through all that. My Dr. prescribed Letrozol and I start retaining fluid all over my body.

    She took my of it and put me on Tamoxifen which I started 4 days ago. Yes I’m scared of it but hoping side effects

    Will not be so so horrible as describe on these forums. Trust your Dr. I know mine will switch to a different pill if Tamoxifen will not agree with me. If you’re not going to try it you’ll never know.

    Good luck

  • mama2fourkiddos
    mama2fourkiddos Member Posts: 48
    edited January 2021
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    Hi Rachel :) I've been taking Tamoxifen since 12/3. I felt like junk in the beginning, which I attributed to it, but actually I really think a lot of it in the first couple of weeks had to do with the removal of my Mirena IUD on 12/1. Basically my side effects that I can attribute to the Tamoxifen are these:

    • Trouble falling asleep - it can take me up to an hour, this does suck, but I just try to get to bed at a decent time to compensate
    • Very very dry everything - drink water, lots of it. I'm up to about 80 oz. a day now and I feel SO much better
    • Achy lower back and joints- again the water helps this and since I've made a concerted effort at drinking a ton, I haven't really had any issues
    • Emotional rollercoaster - yes, this happens, but not daily and I'm recognizing it and trying to work through this one
    • Hot flashes- so far only at night and they do wake me, but aren't overly bothersome
    • Foggy brain- not all of the time and maybe it's the broken sleep too
    All in all if this is how the side effects continue for the next 5 years, I'm ok with it. If you decide to, you can do this. 5 - 10 years is a finite amount of time and it will end eventually, it's not forever. My side effects and hopefully yours aren't all dumped at once and are manageable. Good luck!

    Gabrielle

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited January 2021
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    Rachel, one of the problems with self-reporting side effects of Tamoxifen is that once someone is on Tamoxifen, they naturally assume that any physical change they experience is attributed to Tamoxifen. When I was diagnosed back in 2005, I was just entering menopause. Because of my diagnosis and surgical choice, my MO recommended against Tamoxifen for me, so I never took it. But reading this board, I noticed that because I was going through menopause, I was experiencing many of the same "side effects" as those who were on Tamoxifen. I don't know how old you are, but if you are in the peri-menopause years or if you are approaching or entering menopause, it will be difficult to know which symptoms are caused by Tamoxifen and which are caused by the normal aging process of your body.

    These two charts help show this. Both compare side effects for Nolvadex (Tamoxifen) vs. a placebo; NSAPB B-14 was a Tamoxifen study on early stage breast cancer patients, and NSABP P-1 was a Tamoxifen study on high risk patients. You can see that in both studies, a very large percent of patients taking both Tamoxifen and the placebo experienced "side effects". So to understand the real effect of Tamoxifen, you have to look at the difference between the placebo figure and the Nolvadex figure. For example, the majority of those taking Tamoxifen indicated that they'd experienced hot flashes. But in the B-14 study, in fact only 16% more patients experienced hot flashes while on Tamoxifen than those who took a placebo. In the P-1 study, it was 12% additional patients on Tamoxifen who experienced hot flashes.

    image

    image

    Certainly there are some women who experience severe side effects. And most patients experience some some effects. But millions of women have taken Tamoxifen for 5 or 10 years, so for many women the side effects are a bit annoying or bothersome, but nothing more. Until you try it, you won't know how well you tolerate it, or perhaps if your body will adjust to it after a period of time.

    By the way, while I was not originally prescribed Tamoxifen, being older and higher risk, I did start on an AI (Aromatase Inhibitor) about 20 months ago. So far (knock on wood), my side effects are minimal.

  • flashlight
    flashlight Member Posts: 311
    edited January 2021
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    Hi, TwoForOneSpecial, I'm sure I am older than you. I take Tamoxifen because I have osteoporosis. I'm almost 2-years in and finally doing pretty well. I felt like I was going through menopause again and went through the emotional rollercoaster, either crying or being angry, but that resolved. One thing that helped me was to build up my dose. I took 10mg for awhile before increasing it to 20mg. Now, I split my dose 10mg in AM and 10mg in PM. That is what works for me. So there are options. I take magnesium at bedtime for the leg cramps and try to walk daily. Fish oil for dry eyes and b-complex for energy. Check out the posts on supplements. I drink a lot of water!! I'm sure your doctor ordered a bone density that is important before you start. See your Gyn for a transvaginal ultrasound baseline. Unfortunately, insomnia is a major side effect. I think that is what really gives you a foggy brain, if you do not sleep well. I'm still getting the hot flashes, but that I can deal with. So far so good. The best of luck!

  • mariagonzalez
    mariagonzalez Member Posts: 1
    edited January 2021
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    Hi--first time poster here. Have been on Tamoxifen 5 months and besides the increase in hot flashes and night sweats, have had no major issues. I am a 54 yo obgyn, so well aware of the other risks/side effects, and worried about those risks also but believe the benefits outweigh the risks. I have had colleagues mention mood/depression/irritability/anger issues with Tamoxifen but I think perimenopause is more of a culprit than the medication.

  • badger
    badger Member Posts: 24,938
    edited February 2021
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    Hi TwoForOneSpecial, I was on tamox for five years (from 2010 to 2015) and didn't have bad S/E. The ones I had were manageable. As others have described, most were like menopause symptoms. Here are some ways I coped.

    Hot flashes: dressed in layers and carried a folding hand fan everywhere. Would deploy the fan in meetings and people would just smile. Lots of them have older women in their lives.

    Night sweats: kept the bedroom very cold and would flip the blankets off & on all night. DH dealt with it. Slept with a pile of clean t-shirts by my side of the bed. If I woke up soaked, I'd whip off the wet one and slip on a dry one.

    Nighttime leg cramps: try the bar of soap under the sheets trick (it's weird but it works). https://www.peoplespharmacy.com/articles/why-does-soap-soothe-nighttime-leg-cramps

    (Maria, welcome to BCO!)

  • flashlight
    flashlight Member Posts: 311
    edited February 2021
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    Ha Ha Badger, Even if it is a placebo effect I'm going to try the soap!! Yes, welcome Maria and best wishes.

  • Rhodigirl
    Rhodigirl Member Posts: 1
    edited February 2021
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    I'm just coming up on five years of taking 20mg of Tamoxifen daily. I've had virtually no side effects.

    The first month, I had some hot flashes and leg cramps. They were not anything extreme, just bothersome, and easily resolved by drinking more water and making sure to increase my potassium (added a banana to my diet). I have been careful to take the same brand every month (Mylan). I'm a runner and have not experience any joint pain.

    Honestly, I wish I could take it for five more years.

  • moderators
    moderators Posts: 8,213
    edited February 2021
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    Rhodigirl, welcome, and many thanks for sharing your positive experiences! Glad you've been able to continue running.

  • badger
    badger Member Posts: 24,938
    edited February 2021
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    Welcome, Rhodigirl! Like you, I would have taken tamox another five years but my onco said no. I was in menopause by then so he prescribed another anti-hormonal (anastrozole - generic for Arimidex) which I took from 2015 to 2020.

  • gb2115
    gb2115 Member Posts: 553
    edited February 2021
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    Hey there, I'm one that has posted and been vocal about what I consider pretty severe side effects. Some of it is venting, sometimes it's nice to hear about others going through the same side effects. At first it was just hot flashes, and I used to post about how it wasn't a big deal to take, but after a couple of years the difficult things set in and has worsened as the months go by. I don't regret taking it though because I understand the benefit. But I'm going to try to make it to year 5 and then stop. I'm unlikely to make it to 10 years unless I can somehow get a new vagina, lol. When I discuss the side effects with the oncologist she winces and reminds me I can quit at 5. I appreciate she hasn't tried to deny that the med is making my 42 year old body feel 82.

    But still, these are difficult choices and I understand the fears. My advice is to take it and hope for the best. Many people do just fine. You could be just fine. The rest of us manage somehow. And it's not like you sign a contract agreeing to take it. If it doesn't work out, you can stop taking it.

  • beaverntx
    beaverntx Member Posts: 2,962
    edited February 2021
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    Maria, re mood changes when on Tamoxifen, I do not believe that, at age 80 and decades post menopause, my mood changes while on Tamoxifen are perimenopausal. They started shortly after starting Tamoxifen and, while abating a bit, are still present after 2.5 years. For me, most of the side effects are cyclical and at the moment many of them are in the barely there phase.


  • ZEKE
    ZEKE Member Posts: 59
    edited February 2021
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    Hi all Tamoxifen users! I tried all the other 4 drugs for the cancer and that span was about 7 months. I could not take them so the oncologist put me on Tamoxifen.

    At first I felt great and was so excited I was finally able to take a drug to help stop the cancer from coming back without any side effects. 4 months later the side effects started, for me I think it was Tamoxifen building up in my system. I started to get vaginal discharge which I had never had before (got a pap all was fine Dr. said its the tamoxifen) ok then I started to get these low grade headaches, I have high blood pressure and take medication for it so Tylenol really does not help and I cant take ibuprophen. All that I could manage. Then I started a walking program to lose weight I am not that heavy but I wanted to get in better shape and need to lose 20 lbs which of course is not easy on tamoxifen. So on I went I walked 5-7 miles every other day to start then started walking faster. I would knock me out because I am always tired on this drug and also have been having digestive issues like nausea sour stomach frequent bowel movements etc. Then 2 days ago I started to walk and my legs started to pull back it seems it was difficult for me to walked but I pushed through I started getting pain in my elbows and my leg muscles felt tight. I do stretching etc. then I got severe stomach cramps and my digestive system was not working up to par. I got so concerned as it seemed the longer I took this drug the more side effects started coming out. I still have nausea and am taking an acid pill now for my stomach it helps a little.

    I called the oncologist and he took me off the Tamoxifen for 2-4 weeks to see if I felt better off it. Just to rule out it wasn't something else. So I am off it now.

    Did anyone else ever have these symptoms before after taking this drug for a few months?


    Thanks

    Zeke

  • flashlight
    flashlight Member Posts: 311
    edited February 2021
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    Hi Zeke, I had the vaginal discharge and thought well at least I don't have atrophy/dryness. Since my hysterectomy I don't have either issue. I've always had heartburn, but it did increase with the tamoxifen. I do take Pepcid and that is working so far. If it gets really bad I do the 15 days of omeprazole and then I go back on the Pepcid. I never had the issue with constipation that others have. I have increased my water intake. Since splitting my dose I haven't had any problems with nausea or dizziness. When I took the full dose I did have problems with pain in my legs to the point where I had difficulty walking. I took a break like you are doing then restarted at 10mg and slowly increased my dose. Do you take any supplements? My doctor recommended B-complex for the fatigue and it has helped. The tamoxifen does give you some pedal/ankle edema that might elevate your blood pressure some. I would talk to your PCP about that and the headaches. My PCP gave me an order for Neurontin100mg. that I took for a while to help with the chest discomfort from radiation that also helped with the night sweats. My MO wasn't in agreement, but I was glad to have it. Best wishes.

  • mirandapriestly
    mirandapriestly Member Posts: 12
    edited February 2021
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    I took tamoxifen for almost 3 years, then took a break to have a baby and have been back on it for about 3 months. I find that the S/Es are most noticeable in months 2-3, but they're manageable. I get night sweats, have strange dreams, and I remember noticing joint/hip pain the first time around but have not noticed that this time. I did seem to gain about 15 lbs over the 3 years I was on it the first time, but I can't say whether that's all tamoxifen's fault, although it's nice to place the blame :).

    I had a hard time at the beginning taking it, though, but looking back I think a lot of it was just mental (sad/angry/bitter about getting dx'd with cancer at 31) and didn't have a lot to do with the actual S/Es of the drug. The first 6 months were the hardest and maybe I was still experiencing the S/Es after that, but I didn't notice them anymore. A 'new normal' you could say.

    Honestly, now that I have been fortunate enough to have my son, I can't imagine NOT taking any medicine available that would reduce my chances of recurrence so I can stay around for his sake.

  • ZEKE
    ZEKE Member Posts: 59
    edited February 2021
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    Hi flashlight,

    I do take vitamins and magnesium and potassium plus B-12. So I am good with that.

    For me as soon as I started one of these drugs it would take a few months for the side effects to creep in. Unlike some women who get the side effects right away and after time they go away.

    I am just the opposite. I hope this 2-4 week break helps. I will most likely cut my 20mg in half and start to take 10mg to slowly introduce it back into my system. Of course I will talk to my oncologist first.

    Thanks!

    Zek

  • TwoForOneSpecial
    TwoForOneSpecial Member Posts: 35
    edited February 2021
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    I finally sucked it up and started the Tamoxifen about 10 days ago. So far not terrible, but not great. I have a low level of nausea nearly all the time. If I wasn't taking this I would be wondering if I was coming down with a stomach bug. It doesn't keep me from eating, I can function, I just feel not great. I've also had headaches pretty much every day. Again, nothing that interferes with my functioning.

    I'm hoping these will go away as I adjust. Are they side effects I can live with? Yes. But I don't want to spend the next 5 years feeling slightly crappy.


    Rachel

  • nola70115
    nola70115 Member Posts: 61
    edited February 2021
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    I have had very few side effects from tamoxifen. Hardly noticeable really. However I just got dxd with a recurrence after 7 years so make of that what you will. I remember hearing that the med works best for people who have stronger side effects.

  • arb95f
    arb95f Member Posts: 7
    edited February 2021
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    Thank you for asking this question - this is exactly where I am at right now. I just finished surgery and it has been far less painful than I was anticipating. I’m gearing up for radiation starting in March and am less worried about that - I guess going through my first surgery has helped me feel more at ease with medical procedures now. However, my worry with Tamoxifen has been hard to get past after reading all of the horrible side effects people talk about.

    I’m only 43 and have always been very active outdoors and love traveling to remote places (my husband and I have a trip to Antarctica currently scheduled for this December), so I am really concerned about having to give up the things in life that give me joy. Hearing even getting out of bed can be a problem has been making me really depressed. I am trying to keep hope that it might be ok, but this is the part of the journey that scares me most and actually makes me angry that women don’t seem to be taken seriously in their suffering with this drug. 40+ years and no one has come up with something better and there seems to be a host of studies trying to determine if the quality of life impacts are really that bad? Come on!

  • ksusan
    ksusan Member Posts: 461
    edited February 2021
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    My first while with Tamoxifen was difficult, and now it's in the background most of the time. Trying different generics helped me find one that wasn't hard on my joints. Remember that people who don't have trouble don't tend to report that on message boards in the long term, so there's an over-representation of negative experiences.

  • molly1976
    molly1976 Member Posts: 78
    edited March 2021
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    Hi, I just completed 5 years of tamoxifen and the only side effect I had was that my periods stopped. I finished tamox in September and my periods are back now and I have to say, I wish I had that side effect back! :)

  • pebblesv
    pebblesv Member Posts: 486
    edited March 2021
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    Hi Rachel - I've been on tamoxifen for 2.5 years now and am one of those who is tolerating it pretty well. So yes, I can provide reassurance that is IS possible to take tamoxifen and not experience the hot flashes or joint pain that others experience. That said, I'm on a 10 mg (half) dose, and have no plans to increase my dose. My oncologist is on board with this after reviewing some recent research that came out in Dec. 2018 re: 5 mg doses being just as effective as 20 mg on early stage breast cancer, and I think some research since then on 10 mg doses being just as effective.

    Anyways, these are the side effects I've had or didn't have:

    • Experienced nausea in the first week. It went away after that. My oncologist said it was just my body adjusting to a new hormone.
    • No joint pain. Never happened. I swim and do yoga, maybe that helps?
    • No hot flashes. My friend who is peri-menopausal experiences hot flashes all the time, I have not. My oncologist thinks its because I'm pre-menopausal.
    • I HAVE gained weight on tamoxifen and can't seem to lose weight. I had lost weight successfully just before starting tamoxifen, I gained it all back and can't lose it doing the same things I did to lose weight the first time, so I DO think this one is linked to tamoxifen.
    • I don't know if tamoxifen is weakening my bones but I did break my toe earlier this year and I've never had a broken bone in my life. I think its the tamoxifen, my husband think its just a fluke coincidence.
    • I had an irregular period the first 6 months of taking tamoxifen. My oncologist said it would steady out and sure enough it did, I'm back to a regular monthly cycle now.
    • Still seem to have all my hair and it still seems to be thick.
    • No vaginal discharge and no dryness.
    • Mood changes are fully related to that time of month and not tamoxifen, my husband is well aware when its that time of month.
    • No leg cramps, but again maybe the swimming helps.

    molly1976 LOL on wishing you had the SE of no periods back! I agree, it's actually the one SE that I said I would be OK with having, and I didn't get it. My time of month is very regular still and like clockwork every 30 days or so, for better or for worse!


    Pebbles

  • cmartinperez
    cmartinperez Member Posts: 1
    edited April 2021
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    Thanks for this question! I'm just about the start and refuse to let it get me down.


  • TwoForOneSpecial
    TwoForOneSpecial Member Posts: 35
    edited June 2021
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    Here's my update: On Tamoxifen for 4 months and things are going well. The week of nausea passed as I was getting used to it. Then the hot flashes/night sweats started, but they weren't really so bad. Some terrible cramps in my calves, also at night - I learned that if I make sure to flex my feel when stretching my legs then it's fine - if I stretch my legs with my feet pointed my calves seize up immediately. However, the really bad side effect I had for several months was having to pee 6-8 times every night! It really disrupted my sleep, and I was so exhausted I could barely function. I discussed with my MO, and his only suggestion was to stop the Tamoxifen for one week and then start again. He said that sometimes this short break gives your body a chance to reset. It sounded very unlikely, especially since the drug stays in your body for a long time. However, it worked! In fact, since going off and back on I have had virtually no issues at all. I can sleep through the night (getting up only once or twice, as is normal for me), no sweats, no cramps... It seems very weird, but I'll take it!

    So, to answer my own question, yes - it is possible to be on Tamoxifen without ruining your life. I know I'm only 4 months down, 56 or so more to go, but I am hoping for an easy time of it now.

    Good luck to everyone else!

    Rachel

  • buttonsmachine
    buttonsmachine Member Posts: 339
    edited June 2021
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    So glad you were able to troubleshoot with your MO and that things are better now! That's great news, and it's good for others who are facing similar challenges to know that sometimes these things are fixable.

    I had a similar situation where I was having some unpleasant headaches and some other symptoms when I first started Tamoxifen. I thought, "I have to quit I can't live like this." But my oncology nurse practitioner encouraged me to give things 6-8 weeks to normalize. I didn't believe her that they would, but I stuck with it, and they did! After that adjustment period I had NO bothersome side effects from Tamoxifen at all. I'm glad I gave it a chance.