When did your tamoxifen side effects start?

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Good morning everyone,

I have a question for those of you on tamoxifen, when did you start noticing side effects from taking it? 

I started taking tamoxifen last Monday (so a week ago today) and so far the only side effect I can attribute to it is having an early period. Knock on wood, but I have not noticed much side effects at all. I'm just afraid that I'll be blind sided in a couple of weeks with more serious side effects and just want to prepare myself.

I'd also love to hear if you have not experienced any major side effects as well. I know we are all different and react to medication differently and some side effects will appear much later, but any experiences you would like to share would be greatly appreciated.

Thanks :)

Comments

  • edwards750
    edwards750 Member Posts: 3,761
    edited April 2014

    I have been taking Tamoxifen for 2 years now and the SEs I am having didn't start right away. I was originally on Arimidex but because I have osteoporosis my Oncologist switched me to Tamoxifen. Arimidex attacks the bones and I could ill afford with my condition for that to happen. Weight gain, lack of concentration, sleeplessness and forgetfulness sometimes but that could be attributed to age. There are women who don't experience any real SEs and others who have worse ones than I do. You are right it depends on the person as usual. I will say I don't think any real SEs would kick in after just a week. Whatever you experience though it is certainly better than the alternative. To me its like having an insurance policy against a recurrence. Diane

  • hwhranch
    hwhranch Member Posts: 149
    edited April 2014

    edwards750  you said: 

    Weight gain, lack of concentration, sleeplessness and forgetfulness sometimes but that could be attributed to age.

    This is soooooooooooo me and I am 50.  It is so very frustrating but my oncologist told me it's because of all the hormones the front of your brain needs to work through all the above things, and well...we are not giving the brain the hormones it needs.

    I was originally on Arimidex because I had not been throug menopause yet but got swapped to Tamoxifen due to the bone pain I was experiencing. This is my 3rd year.

  • lonnie713
    lonnie713 Member Posts: 236
    edited April 2014

    question: can you take tamoxifen if  uterus/ ovaries have been removed? I thought that is when the AIs come in to play.

  • Monis
    Monis Member Posts: 472
    edited April 2014

    I have been on Tamoxifen for 4 months and my SE's have been pretty minimal.  I get mild warm flushes, my fingers ache at times, I seem to have more trouble sleeping, and I've been more emotionally volatile.  But then again, these things may not have anything at all to do with Tamoxifen at all.  Who knows?

  • coraleliz
    coraleliz Member Posts: 1,523
    edited April 2014

    My side effects come & go. I think they started about 2 weeks into my 5year plan. I think the dizziness was the most problematic. Followed by urinary incontinence. My hot flashes are so mild that I actually like them(I'm usually cold). It has also made me very intolerant of alcohol. But then again with just the dizziness, I often feel a little drunk. I've been on the drug for about 2 1/2 years. I'm kinda surprised I made this far. It was a rough & unpredictable road at first. Best of luck.

  • hwhranch
    hwhranch Member Posts: 149
    edited April 2014

    lonnie I had a complete hysterectomy as part of my hormone therapy and am on Tamoxafin.

  • lonnie713
    lonnie713 Member Posts: 236
    edited April 2014

    hwhranch will you eventually be switched to an AI? Or is tamoxifen it? I'm going to have a complete hysto/ooph and my MO said that I will need to switch. I haven't started the tamoxifen yet as I just finished chemo on 3/21.

  • bluepearl
    bluepearl Member Posts: 961
    edited April 2014

    I didn't have any SE. Hope it stays that way too.

  • Oncearunneralwaysarunner
    Oncearunneralwaysarunner Member Posts: 252
    edited April 2014

    thanks for the great responses everyone. Hopefully the side effects will remain minimal and/or manageable for all of us.

  • Frankenfinger08
    Frankenfinger08 Member Posts: 8
    edited April 2014

    I have been taking tamoxifen for a little over a month.  The hot flashes started pretty much once I started.  Now I'm currently into day 3 of intense lower back pain, hip pain, and my ovaries feel ready to burst.  My period is due any minute now and I feel just awful.  

    I'm 41 and miserable on this drug, to be honest.  I'm so moody and miserable I hate myself some days.  I have been unable to sleep through the night on this med due to the damn hot flashes although by 7 pm I'm ready to drop.  I'm not sure I can do this for 5 years.

  • Annette47
    Annette47 Member Posts: 957
    edited April 2014

    Mild hot flashes and mild hair thinning, both of which started about 4-6 months in.    The hair thinning seems to be resolving (I'm a year in now) and the hot flashes have remained mild, thankfully.   I didn't have them all winter, but as soon as the weather warmed up a bit they came back.

  • Salina888
    Salina888 Member Posts: 96
    edited April 2014

    I'm 43, been on tamoxifen for almost 4 months.  Hot flashes during chemo, and continued hot flashes when I started tamoxifen.  Period stopped during chemo, and hasn't returned since. :)

    I've been eating really healthy, mostly organic, and lots of green shakes.  I cut out sugar, carbs and red meat as much as possible.  I've been reading that it's easy to gain weight on tamoxifen.  So far my weight has not gone up, I lost a couple of lbs. 

    I noticed i'm a bit more snappy and moody, which i'm working on.  My hips and lower back have been feeling sore.  Oncologist has me scheduled for a bone density test to keep an eye on.  I've been going to the bathroom at least 4 times a night, which i'm not sure if it's because I've been drinking a lot of water, or because of the chemo or tamoxifen? 

    I sleep with the fan on, with shorts and a tank top, and have a thin sheet and thick blanket so I can switch back and forth to relieve my hot flashes.  Imaging 10 years of this? 

    God has held me together, so no depression. Keep the faith, and be strong!

    lol....gotta love life.  God Bless you all!

  • Runnergirlwbc
    Runnergirlwbc Member Posts: 2
    edited May 2014

    I'm 46 and started taking Tamoxifen mid February. I had a mastectomy and did not have to take radiation or chemo treatments.  I actually feel pretty good with the hotflashes being the major symptom for me.  My oncologist said I could take vitamin E to see if that will help with the hotflashes, she also gave me a script for venlafaxine, which is an antidepressant.  A very low dose has been known to help 50% of women with hotflashes.  I will use this as a last resort.  I'm an advocate that excersice and clean eating play a huge role in your physical and metal well being.  I back to running 6 miles a day about 4 days a week and feel great. I hope that I continue to feel this good, time will tell.  

    Good luck with your treatment :)

  • Muffins123
    Muffins123 Member Posts: 11
    edited May 2014

    Hi Lonnie,

    My mom had her uterus and 1 ovary removed long ago and she just started taking Tamoxifen.

  • lovestorun
    lovestorun Member Posts: 167
    edited May 2014

    Once - hope by the time you read this nothing has changed and that your SEs have been minimal.  I've been on Tamox for a little under a year.  Pre-menopausal.  Minimal SEs within the first month or two (it's hard to remember) - mostly more brittle hair / nails.  Every once in a while, a hot flash, but those have remained rare and manageable (for now).  FWIW, I take my dose at night so if/when I've had one, they've been at night (not sure if there's any correlation, but I'm not switching to a morning dose to find out!).  I did start to get foot cramps about 6 months in - that's the only "new" SE that didn't surface right away.  Am taking magnesium supplements and drink tonic water and those has helped.  I think the cold weather this winter may have played a role; I find that if I can keep my feet warm, that helps also.  

  • Oncearunneralwaysarunner
    Oncearunneralwaysarunner Member Posts: 252
    edited May 2014

    thanks lovestorun, the side effects are still very minimal six weeks in. Just the odd hot flash at night and a queasy stomach if I don't take it with food. I've been taking it in the morning because it's the only way I'll remember to take it with food. I've also noticed that my appetite is somewhat reduced and I've managed to lose 4lbs without really trying, could just be other stressors going on through. I'll have to watch out for the cramps and make sure I keep stretching.

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