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Has anyone felt BETTER on tamoxifen?

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gemini4
gemini4 Member Posts: 320

I know it sounds crazy! I'm meeting with my MO tomorrow and will probably get my rx. I'm definitely going to take it.



I'm wondering if any women who were estrogen-dominant saw improvements in their related symptoms. I don't know if I'm officially e-dominant, but I get migraines around my cycle. Within the last year (I'm 48) I developed psoriasis that flares up around my cycle. I saw a link online for a study citing tamoxifen as a treatment for psoriasis. So that got me wondering if some (albeit few) women might feel a little better? Wishful thinking, I know, but I'm trying to look at the bright side of things!



I recall years ago an older female doctor told me her cycle-related migraines went away with menopause, so that's one positive side effect I can look forward to.

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  • Belinda977
    Belinda977 Member Posts: 150
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    Yes, had heavy periods before and now don't have one.  I do have ezyma and it's not better.  

  • voraciousreader
    voraciousreader Member Posts: 3,696
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    I did two years of ovarian suppression and am now completing my third year of Tamoxifen.  From a fashion point of view....it's so nice to be able to wear white slacks again and NOT have to calculate what time of the month it is before putting them on.

    I had few side effects.  Mostly gynocological.  I highly recommend a baseline transvaginal ultrasound BEFORE taking the Tamoxifen.....

  • besa
    besa Member Posts: 289
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    I lost weight on tamoxifen which was a plus.

  • Maja2213
    Maja2213 Member Posts: 5
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    Hi,

    I have been on tamoxifen since April 2011, so nearly 2 years at this point.  The plus side to tamoxifen (besides fighting recurrance) for me has been that I have lost 18 pounds since that time exercising and eating right -- just as I did for at least 10 years before diagnosis.  I don't know if it is the tamoxifen, but it seems to have given me that little extra I needed to stop maintaining my weight and to actually lose weight.    Also, I have had only about 6 migraines the entire time down from 2-4 per month (around ovulation and menstruation times) before the cancer diagnosis.  I had chemotherapy prior to starting tamoxifen and thought my periods were totally done (I was 45 when I had chemo.)  However, I had one surprise period after 23 months of nothing.  I had it all checked out for possible endometrial cancer and was told all was fine, however now my gynecologist thinks that I am not in menopause at all and that the tamoxifen is simply suppressing my periods. 

  • Annette47
    Annette47 Member Posts: 108
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    Starting my tamoxifen prescription tonight, so I'll let you know but I was wondering the same thing!   I have always had cycle-related breast pain which has been getting worse over the years and I was reading the tamoxifen is sometimes prescribed for that, so I'm hopeful that will at least let up.   Lighter periods and/or longer cycles would be a plus as well (I was 31 days most of my life but the past couple years it's shortened to 26 days, which from what I understand is too much estrogen in relation to decreased progesterone).

    Weight loss would be a good thing too, but I don't want to get greedy, LOL.   I've actually been losing steadily but slowly over the last year, so all I want from the Tam is not to interefere with that.

  • Meganmm
    Meganmm Member Posts: 3
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    My first post here...



    I started taking tamoxifen last summer, and have not had a period since September. I turned 50 in November and had been very regular up to that point. So that is a positive (for me).



    However, my headaches are worse, and really seem to be related to changes in weather. I have always had headaches, but these are worse and I have a special prescription for them because nothing seemed to help.



    Tamoxifen has also made me more fatigued than I use to be, but other than the fatigue and headaches, I really don't notice any other side effects.

  • Bklyn718
    Bklyn718 Member Posts: 1
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    I just started tamox on Monday and am feeling a bit worse (head ache and loss of appetitie) but hopefully it is just my body getting use to the new meds. Some people suggested splitting the tablet and taking half in the morning and half at night so I am going to see how that goes today. Would love to hear anything else people have done to help alleviate the side effects.

  • MaggieM
    MaggieM Member Posts: 1
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    I stopped getting migraines and I lost 30 lbs without trying. I'm one of those that constantly battles with 10-15 lbs. I'm up and then I'm down and then back up again, it's a constant struggle.



    I just turned 51 and when I started Tamoxofin at the beginning of this year, I dropped 30 lbs quickly. I don't have an appetite at all. It messes with my stomach so I make sure I eat healthy food. I use to love sweets and now I turn my nose up at them. I'm not complaining one bit! I just hope I can keep it off.

  • gemini4
    gemini4 Member Posts: 320
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    Maggie, that sounds encouraging! Though sorry to hear about your stomach issues. Off-topic, I grew up in STL! :-)



    I took my first tamoxifen tablet this morning. I know it's early, but so far have felt nothing! ;-) This week I've resumed exercise (strength + cardio). Really hope I stay on a regular schedule of 3-4x weekly, and I'm reminding myself it's another component of treatment going forward.

  • Annette47
    Annette47 Member Posts: 108
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    Just wondering how it was going for you, Gemini?

    I've been on it a week now and so far so good (although I know it is early).   I have been having short menstrual cycles the past couple years and so far it is a day late (good thing); My cyclical PMS breast swelling/tenderness has gone away (good thing) and I have lost weight this week (good thing).

    I know things can change, but so far I am liking this!

  • gemini4
    gemini4 Member Posts: 320
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    Hi Annette,

    Thanks for asking!  Today is Day 7, and I am happy to report that I don't really notice a difference.  I have had a few hot flashes here and there, but I have been having them off and on for about eight months now, so I'm not sure they're driven by the tamoxifen.

    I'm also a little tired, but I have been ramping up the exercise, and the fatigue feels like it's related to the increase in activity.

    Basically, so far, so good!  I'm glad it is going well so far for you, too.  Hope we continue to feel fine.  When I take my pill each morning, I do imagine it doing its job to block those estrogen receptors.  ;-)

  • Charz
    Charz Member Posts: 4
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    gemini, i too feel BETTER with tamoxifen. it was actually something i too had planned to start a discussion about. my blood results which were pretty off in different areas are now perfect. i havent had too many symptoms. i wondered if this means its not working, but im not sure if they have proven whether or not that is indeed true. i hope not!!! but i do think i feel better on this medication and i think it helped me on my blood work in areas unrelated to breast cancer. 

  • Charz
    Charz Member Posts: 4
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    by the way, i am taking the Watson brand, which i heard is pretty good. the different brands cause different side effects apparently. im not sure what would happen once i switch brands

  • gemini4
    gemini4 Member Posts: 320
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    Charz, that's great to hear! Can you tell me more about what has improved?



    I just discovered that my tamoxifen's brand is also Watson. Good to know it's considered one of the better brands.

  • LtotheK
    LtotheK Member Posts: 487
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    I didn't realize the extent to which I was ruled by periods.  They were heavy, they totally messed with my head, and I got horrible bloating, pain, and weight gain around my periods. They were also unpredictable, and I had more than a couple of embarrassing moments.  I've only had two periods since being on Tamoxifen.  I have to say, it's quite a relief.  I deal with hot flashes, though.  My weight and pretty much everything else is same.  We'll see.  It can be hard on eyes and other systems long term.  Fingers crossed.

  • farmerlucy
    farmerlucy Member Posts: 596
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    I started the tamox again yesterday. I had some PTSD early on, and I blamed much of it on the tamox (a year ago). Now I realize there were other things going on, so I thought I'd try it again. Day 2 and so far, not that bad. I am on Prozac, and I know I'm going to have to switch, but I wanted to see if I could tolerate the tamox before I do. One of the big factors in trying again is my heavy periods, to the point of anemia. At 52, there seems to be no end in sight. I see my onco next week. I saw on another post that Zoloft is acceptable, and I know Celexa (not for me) and effexor are ok. Anyone have any studies that the Zoloft is acceptable? Thanks and cross your fingers for me! This has been nagging at me for a year, so I decided to jump in with both feet! Better late than never!

  • Sandra60
    Sandra60 Member Posts: 15
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    Hello ladies .



    Glad to find this thread ! I will be starting tamoxifen after rads ends may 10th. Did most of your wait till the end of rads? I feel great ( only 2 weeks into rads) working out a lot and ridding my bike ( I am in a women's bicycling club called The bodacious biking babes ). And loosing weight on my mostly vegetarian diet - woo hoo ! I also wondered if your MO's took your estrogen levels to find out if you should be on tamox or an AI? I was Pre- menepausal before chemo but have not had a period since and are getting hot flashes as night . I asked my mo if she was going to test my estrogen levels and said no it was not necessary ...

    Sounds like most of you are doing great on tami so that is good news !!!

  • lemon68
    lemon68 Member Posts: 301
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    I have not started taking mine yet, I have the RX but wanted to wait 30 days post Rads to start. Just wanted to feel like me before taking.

    I understand the migraines and heavy periods, mine were terrible. At 42 I had a uterus ablation, havent had a period since its been 17 months! I also have no PMS symptoms whatsoever.  I was in fear the tamox would bring them back, MO said no way. He also told me since I had the ablation I didnt need to worry about uterine cancer because there is no lining for it to grow. Just thought I would share in case anyone is suffering with bad, heavy periods. It was a miracle for me.

    I am still scared to take it due to the SEs, hearing some have actually lost some weight on it reminds me we are all different.

    Thanks for starting the thread Gemini.

  • Sandra60
    Sandra60 Member Posts: 15
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    Hi Lemon - totally understand about wanting to feel normal before starting tamox. My

    RO said most women wait a few weeks after the end of rads to start so you are in the majority . I had kind of heavy periods too but I am about 10 years your senior ( 52 ). I had considered an ablation too but never did it . I think I will have a transvaginal ultra sound though before I start tami as one previous poster suggested . When are you starting it ?

  • TreadSoftly
    TreadSoftly Member Posts: 88
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    Hi ladies,

    I was diagnosed in 2009, took tamoxifen for 3 years & am currently taking a tamoxifen holiday, in an effort to see about starting a family (Im 32). 

    I stoped taking tamoxifen in January & I miss it in certain ways!!  I had ridiculously light periods while on tamox, approx every 6 weeks, lasting approx 24 hours.  And I had no PMT or sore breasts pre-period either.  My skin was fantastic on tamox, now I am getting occasional spots again!  Of note, it took a whole month of not taking tamox before I noticed anything.  I think it takes a month to reach 'steady-state' levels in your body & at least a month for it to completely leave also. 

    Im going to give myself a year off it, hopefully fall pregnant in that time (now having regular cycles, lasting 4 - 5 days with PMT!!) & gladly go back on tamox after that time to finish my course!

  • Sandra60
    Sandra60 Member Posts: 15
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    Tread softly - many wishes for you on your upcoming pregnancy and eventual new baby - how wonderful for you ! I have one son age 18 now and going off to u of Arizona in the fall . The experience and the love I have for him are beyond description - I highly recommend it :)

    Glad to hear about the better skin SE - I will welcome that one as I have always had a bit oily skin prone to breakouts . In fact prior to diagnosis had taken minocycline on and off for years . Did you notice any weight gain from taking it ?

  • farmerlucy
    farmerlucy Member Posts: 596
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    Day four for me, and no real side effects except that I may be sleeping better. Crazy - Last year was completely different. I'm so glad I tried again. I've had a little nausea  and a small headache, which are both now gone. Each time I told myself "hooray, it must be working!" Maybe it is all about reframing the issue AND my new attitude. Hopefully this will shorten/end my cycles!

  • new2bc
    new2bc Member Posts: 252
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    Hi everyone,

    for poeple who are responding to this post, can you please share the company that manufactures your Tamoxifen since they will have different side effects. I too will start taking this pill in a few weeks.

  • crazyride43
    crazyride43 Member Posts: 42
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    I have been following this thread, because I haven't had a lot of what seem like typical side effects on Tamox.  I started taking the pills at the end of September 2012, so six months in.  My first brand was Teva, then they gave me Mylan, now Watson (about 2 months on each).  In this time period I have lost 25 lbs (15 gained during treatment and 10 more that needed to go!), and gained back the majority of my pre-cancer treatment energy.  Mild side affects are a slight discharge, occasional "cramps" even though my period has stopped, and some bouts of crankiness/mild anxiety.  I sleep well, have plenty of energy for work and exercise, and haven't noticed any big difference between the three brands my pharmacy has given me.

    I was very nervous to start taking Tamox, and the first two weeks I "weaned myself" on by starting with 5mg, then 10, then 15 and finally working up to taking the whole 20mg pill (which I take at night).  Not sure if it helped, but it made me feel more in control!

    Who knows what fun this medication may bring over the next 4.5 years, but for now I hope my mostly positive experience will help others getting ready to start.

  • Outdamnedspot
    Outdamnedspot Member Posts: 164
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    I take Teva and feel great! No real complaints that I can blame on tamoxifen. Not everyone will have side effects. And the benefit outweighs the risks, so try not to worry.

  • thirdgenerationmomof2
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    Hi ladies I've been following this thread as I will start on Tamox shortly too (have the script, just waiting for oncotype score on Monday to see whether I take chemo or not). Very happy and glad to hear of all the positive side effects of Tamox, normally I just hear the bad side effects so thank you Gemini for starting this thread!



    I'm curious as well to hear the manufacturer brands everyone is on?? Seems to make a difference. Is there a way to request a certain manufacturer? Or just all depends on the pharmacy that fills your prescription?



    My intial fill will be at the Rite Aid by my house but my prescription company requires mail in refills for any long term maintenance drugs to be done through the mail.



    Jen

  • TreadSoftly
    TreadSoftly Member Posts: 88
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    Sandra60: I had no weight gain on tamixifen. But after I finished the cancer treatments in early 2010, I have gradually changed my lifestyle to a healthier one. So better eating habits & more exercise! Thanks so much for your words of encouragement for my upcoming adventure!!



    I always took my tamoxifen at night too, like crazyride42. For me, I just thought I would remember it better, ie wash teeth & take my tamox!

  • farmerlucy
    farmerlucy Member Posts: 596
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    I'm taking the Watson brand. 20mg in a.m. Last year I started tamoxifen and celexa at the same time and I think that was a mistake on my part. Plus I think I was sliding into PTSD plus the te's were very hard for me.

  • gemini4
    gemini4 Member Posts: 320
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    I'm glad this thread is taking flight! So happy to hear that not everyone feels horrible. I'm ten days in now, feeling mild symptoms -- discharge, hot flashes (but I had them off and on before so not sure if tamoxifen is entirely to blame), and some mild headaches. Also some fatigue, but I've increased my exercise -- it could be the culprit, as I have been mostly inactive since December.



    The brand I'm taking is Watson.



    I was thinking that some of these symptoms remind me of when I was pregnant 14 years ago. Discharge, mild headache, mild fatigue (no hot flashes back then!). I wonder if it's a similar hormonal state?

  • farmerlucy
    farmerlucy Member Posts: 596
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    For what it's worth - I spoke to my psychologist who had BC 26 years ago. She said she was worried because she'd been on HRT and had to give it up at diagnosis. She said she thought the tamoxifen sort of took its place, and she was happy about that.