Starting Tamoxifen - Spring 2015

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  • live_deliciously
    live_deliciously Member Posts: 346
    edited October 2015

    anyone else cold all the time except for hit flashes? I don't know if its tomoxifen or since I finished rads and was hot all the time before from being nuked. I have awful night sweats. Wake up drenched but am using 5 layers of covers because I'm so cold

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  • eheinrich
    eheinrich Member Posts: 792
    edited October 2015

    Yes!! and the internet says that cold flashes are a thing (so it must be true). That happens to me at night. Makes sense too since estrogen has a role in temp control - hence the hot flashes.

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited October 2015

    yes agreed. If it's on the net....must be true, Har.


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  • ksusan
    ksusan Member Posts: 4,505
    edited October 2015

    Not too much now, but when I was perimenopausal I had more cold flashes than hot flashes.

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  • ORgal
    ORgal Member Posts: 56
    edited October 2015

    I just started getting leg cramps while sleeping (but the hot flashes are better). I'm about 4 months into Tamoxifen. I just read somewhere that the leg cramps can be a side effect. Last night was painful!

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  • bluepearl
    bluepearl Member Posts: 961
    edited October 2015

    It all gets better with time. I have switched to letrozole and have had shoulder, arm and hand pain but that seems to be easing off. Had no s.e. from tamoxifen except a bit of heat.....more heat now. BTW..I fretted about tamoxifen the first go around and when I got the second, I took it. No questions asked now. Take the whole pill..don't fool around with it. If it bothers you, there are others. My second cancer would have been much smaller, if not killed had I taken the tamoxifen like I was supposed to do.

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  • bluepearl
    bluepearl Member Posts: 961
    edited October 2015

    The pharmacist has really good information about these drugs....ask them questions.

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  • Midgiemoon
    Midgiemoon Member Posts: 174
    edited October 2015

    My rash us better, and my aches and pains aren't so bad. This has all been a big adjustment!

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  • ORgal
    ORgal Member Posts: 56
    edited October 2015

    Well reading back on this thread I see that some of you talked about taking magnesium for aches and pains. I thought I'd give it a try, but before that I googled magnesium and tamoxifen. To my surprise I found studies where it helps with hot flashes too! I've been taking it for a few days now and the hot flashes have significantly reduced and the night time leg cramps seem to be going away too.

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  • ksusan
    ksusan Member Posts: 4,505
    edited November 2015

    Checking in after 2 months of tamoxifen.

    Some initial side effects (muscle "zings" in legs, acute vertigo, sleep disruption) seem to be settling down. The last week or so, my sleep has been better in that I still wake up a lot (normal for me) but can fall asleep again more easily. I'm still having some calf cramps (which was a pre-existing problem).

    I have maintained my weight, though I haven't lost any, either.

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  • jkavore
    jkavore Member Posts: 11
    edited November 2015

    Hello. I started taking Tamoxifen in March 2015. I have been having tinnitus in my left ear. Now, I am starting to have bad neck and shoulder pain. Does anyone think that this could be from the Tamoxifen? The sore neck and shoulder pain are really bothering me. Does anyone have any suggestions to ease the discomfort and pain?

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  • Piscean
    Piscean Member Posts: 50
    edited November 2015

    Hi MidLifeCrisis!

    Well, I spoke too soon. Just a week after posting my absent SE, I became dizzy, headachy, continued to see weight gain though I eat very clean, no sugar, no dairy and exercise intensely 6 days a week! Now I get weepy again (as when I first started the Tamoxifen) and my hands ache. Who knows, maybe it's related to Tam maybe not. But the continuing weight gain has me feeling low. My MO says that I can stop the Tam if I can live with the regret of recurrence. Yay.

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  • eheinrich
    eheinrich Member Posts: 792
    edited November 2015

    Piscean, what a crappy thing for your MO to say.

    I need to contact mine regarding muscle & joint pain in my hip and legs. The hip only really bothers me when I go from sitting to standing, I need to give myself a few seconds before I can go anywhere. Legs ache a lot. Blech

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  • Piscean
    Piscean Member Posts: 50
    edited November 2015

    Yes, eheinrich, it's kinda crappy, but also honest and the chance of recurrence seems low. I'm leaning towards stopping the Tam.

    Leg pain is awful! I hope you find some relief for your joint pain. That can put a damper on so many things in life.

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  • Vahonie
    Vahonie Member Posts: 1
    edited November 2015

    Hi all!! So So thankful I found this forum!

    I've been on Tamoxifen since May 2014. I admit the first year I wasn't the most consistent; I had to get used to taking a medication EVERY DAY.

    However since I've been consistent, I have had bad SE's. The night sweats and hot flashes are unbearable.

    Oh and I can't forget about my 0-100 mood swings. I feel so bad for my SO because I rip his head off quite often. It sometimes seems like it's uncontrollable.

    Anyway, my oncologist recommended Effexor and I admit I'm a tad nervous b/c of the SE's I have been reading about. Weight gain, suicidal thoughts, withdrawals, etc.

    I lost 70lbs two years before I was diagnosed and I have worked hard to maintain it. So far I've gained 10 back and I think that's pretty good in the grand scheme of things.

    Can't pretend I'm not nervous about gaining more on the combo of Effexor and Tamoxifen.

    Someone please put my mind at ease!

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  • Moderators
    Moderators Member Posts: 25,912
    edited November 2015

    Vahonie-

    We want to welcome you to the community here at BCO! You've come to the right place for support and encouragement.

    We're sure some of our knowledgeable community will be around shortly to offer some insight, but it's important to remember that not everyone experiences the same side effects. There's a chance that Effexor will work for you without any of the SE's you mentioned. We're hoping for the best!

    The Mods

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  • Beachbaby65
    Beachbaby65 Member Posts: 68
    edited November 2015

    Vahonie, have you tried turmeric and magnesium? I tried effexor and the low dose didn't work but when I titrated up I had a severe allergic reaction which was a bummer because it was helping. The hardest part was getting off of it. The withdrawal for me was awful. It also killed my libido though it helped my hot flashes and mood swings. I ended up taking a two month break from tamo and have been back on it for two weeks. I haven't had any side effects yet, in fact I have very few hot flashes but am cold alot.

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  • eheinrich
    eheinrich Member Posts: 792
    edited November 2015

    My doc wants me to stop the Tamox for a bit to see if the muscle/joint problems ease up. If so she's going to switch me to a different med.

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  • ksusan
    ksusan Member Posts: 4,505
    edited November 2015

    I've been taking Teva and got switched to Watson this month. Definite difference in the SEs. Preference for Teva.

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited November 2015

    I can't get the Teva anywhere around here- have asked, called, etc...

    I can (and do) choose the Mylan brand over the Watson, strictly based on hearsay, and the fact that although my moods and hot/wet flashes are INSANE, I'm proscribing to the "devil you know" theory. Things could be worse.


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  • ksusan
    ksusan Member Posts: 4,505
    edited November 2015

    Ja, I mostly feel like, as long as I recognize the SEs and they're not dangerous, fine. But not happy to keep switching generics (this is my 3rd in 4 refills) because I don't want to keep jerking my body around.

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  • eheinrich
    eheinrich Member Posts: 792
    edited November 2015

    Ya know though it's only been 2 skipped doses and I feel much better. Not sure what the alternative will make me feel like though...

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  • MidLifeCrisis
    MidLifeCrisis Member Posts: 68
    edited January 2016

    Hello all ... Just checking in as I'm not on here too often anymore, but a lot of us are coming close to our 1yr mark for starting tamoxifen. I'm actually only 7mos into taking the full 20mg dose. Besides the occasional hot flashes (at night and very infrequent) and an approx. 40-day vs. 28 mensteral cycle that is lighter than before, I do not have any SE's to speak of (or can complain about). I've been grateful for this, however because of this and contradictory to what she said before, my MO just had me tested for the cyp2d6 enzyme to see if I can metabolize tamoxifen. I'm frustrated because before, when I approached the question, she seemed against the test. I'm anxiously awaiting the results and hoping that no issues are presented. Based on what I've been able to find, there is still not a whole lot of evidence in the validity of the test. I don't want to be in that grey area again, having to make a decision about my treatment plan based on uncertainty. So much of my treatment up until no was like that, yet taking tamoxifen was never a question and the one certainty.

    Anyone else have the cyp2d6 enzyme test?? What were the results and what was your treatment recommendation based on that?

    And for whatever it's worth .. I've been taking the Watson brand and have had no issues. I noticed that the bottle on my most recent refill was by "Actavis" and worried about the switch in "brands", but I've since learned that Actavis bought Watson. So I checked the number on the actual pill (also on the label) and it's the same as the Watson one. Drugs.com is a helpful link to find manufacturers as well as ingredient lists between brands.

    Happy New Year everyone and best wishes to all

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  • jojo9999
    jojo9999 Member Posts: 202
    edited January 2016

    I would love to hear your results - wish my MO would order this test as well. I hate taking a drug and not knowing if it is effective or not. I think the ensyme test was very popular a few years back, but then fell out of favor, not sure why. My symptoms come and go, so I worry that tamox isn't working.

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