Side effects of tamoxifen

chatham
chatham Member Posts: 3
edited July 2020 in Just Diagnosed

I have read up on the drug tamoxifen but i would be interested in anyone's personal experience with the drugs and its side effects. I understand that each person is different and there for each experience is different.

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited July 2020

    Depends on the person. One may not tolerate it at all, another has zero problem. Try it yourself if you are one who can’t tolerate it, there are other meds. The list of se is long, kind of scarey. Doesn’t mean you will have them. I was on it about 8 months, couldn’t deal with it.

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  • bcincolorado
    bcincolorado Member Posts: 5,758
    edited July 2020

    Keep in mind those are just POSSIBLE side effects. I was on 5 years before going to an AI after that for 5 years.

    No matter how hard any "hot flashes" or anything you may feel while on meds if it keeps your cancer away I always felt it was worth it to me and found ways around to combat it with ice packs or whatever to make myself comfortable. There are ways to combat most side effects without taking something else as well.

    Best wishes to you in your recovery.

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  • gb2115
    gb2115 Member Posts: 1,894
    edited July 2020

    I was one who didn't have immediate side effects except for longer duration in between periods and hot flashes. Now I'm more than 3 years in. I don't hot flash much. Periods are still weird. Now I also get tendon/joint pain (like I'm easily injured), vaginal atrophy, dry mouth, dry eyes, and thinning hair. The atrophy is what bothers me the most, and I'm being treated for it. I'm 42 and premenopausal. I am continuing to take the tamoxifen because I value what it's doing, even though the side effects are uncomfortable. Not sure I'll make it past the 5 year mark though.

    This is my experience. It doesn't mean that you will experience any of these side effects. You could have none, or a host of different ones.

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  • Nancy2581
    Nancy2581 Member Posts: 1,234
    edited July 2020

    I didn't have any side effects as far as feeling good or bad. It was like I wasn't even taking it. However, after about a year my pap's smear came out abnormal (never once had this happened before). Had another pap's a few months later and same thing. Went through pelvic ultrasound, biopsy and finally a D & C. Nothing showed up other than abnormal cells. My oncologist moved me to femara and now my pap's smears are back to normal. So I think tamoxifen was messing with me

    Nancy

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2020

    I found out that usually the majority of those on any kind of anti-hormonal who don't have side effects don't post on bc.org...We aren't looking for support since we actually take the drug and don't really notice any lasting side effects from them. There are threads for Tamoxifen here, but just remember that even though you hear about negative side effects from those who do have them, it doesn't mean that you will.

    https://community.breastcancer.org/forum/78

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  • Pjsfaith
    Pjsfaith Member Posts: 2
    edited July 2020

    I am post menopausal and not tolerating tamoxifen well. I started April 1...have had a lumpectomy and starting radiation next week. The tamoxifen has created sweats which put menopausal symptoms to shame. I keep a small fan bedside and try to use pima cotton for night shirts and sheets. These sweats have intruded on my sleep such that I can't work. I'm a nurse practitioner in s local hospital...if not well rested not fit for life decisions...the list goes on...bone pain...nausea...mood swings..fatigue...not to mention battling disability company for trying to deny my claim...boy...what a lesson in faith!

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  • flashlight
    flashlight Member Posts: 698
    edited July 2020

    Pjsfaith, I didn't start Tamoxifen until I finished radiation and then I waited another month due to a knee injury. I was afraid it wouldn't heal. I tried taking the 20mg and was having problems so I started dividing the dose 10mg in AM and 10mg in PM. That worked for awhile. Then it didn't so I went down to 10mg. I just recently went back to taking it twice a day. I'm doing better with it. I have the hot flashes and occasional night sweat. My primary ordered Gabapentin 100mg and I take that nightly. It helps with the insomnia and hot flashes. Make sure you get in to to see your Gyn. Good luck to you!

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  • Moderators
    Moderators Member Posts: 25,912
    edited July 2020

    Welcome, Pjsfaith! We're so sorry you find yourself here, but we hope this community can be a source of support and encouragement for you as you continue on this journey. And we're so sorry to hear about the side effects you've been having! We know that the treatments are often hard to manage, but hopefully someone can offer some tips on how to deal with them. Best of luck on the start of your radiation treatment!

    The Mods

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  • msphil
    msphil Member Posts: 1,536
    edited July 2020

    hello sweetie yes i had side effects from tamoxifen but it was worth it to get me here today a 26yr Survivor Praise God No recurrence. I had hot flashes early menopause vaginal atrophy thinning hair and more.For me im glad i use it. i was diagnosed while planning our 2nd marriages. idc stage2 0/3 nodes 3mo chemo before and after Lmast got married then 7wks rads and 5yrs on tamoxifen.🙏

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  • MsPrecious
    MsPrecious Member Posts: 59
    edited July 2020

    msphil, good to hear your testimony! It's encouraging to a newbie like me. I'll keep pushing this tamoxifen journey, I started in November 2019 and I know it will end well. Thank you again ma'am.

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  • beach2beach
    beach2beach Member Posts: 996
    edited July 2020

    Most noticeable for me is dryness. I have so many other aches and pains normally that I wouldn't know if it was from tamoxifen :). So for me its tolerable. May very well be for you too. Good luck!

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