Bottle 'o Tamoxifen

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  • Starlings
    Starlings Member Posts: 13
    edited July 2017

    I stopped taking tamoxifen last week - planned to stop for 1 or 2 days, but the change was so huge that I can't bring myself to take it again. I haven't told my doctors or my family yet.

  • HoundMom
    HoundMom Member Posts: 14
    edited July 2017

    Molliefish - I haven't been having muscle spasms but my left Achilles is bothering me. I cant tell if its from running or tamox. It's crazy that we cant tell if we have a real injury or not.

    Starling - Good luck with your choice. It's a difficult decision.

  • Amy9848
    Amy9848 Member Posts: 15
    edited July 2017

    The drug maker of my Tamoxifan was switched by the pharmacy to Mylan. I finally got used to the side effects and how to manage them and with this new pharmaceutical company, something is different for sure. My side effects have multiplied and are off the charts. Hot flashes, miserable, toe and leg cramps, moody....wow am I moody. My DH actually called me bi-polar. And he might be right. I am unreasonable and I know I am being unreasonable, but I don't care. I am tired and cranky and need to find a way to manage the new side effects. Is anyone else having new or worsened side effects from the Mylan Tamoxifen? Any advise?

  • HoundMom
    HoundMom Member Posts: 14
    edited July 2017

    I've been on Mylan since the start and my SE aren't off the charts. Hope you can level out.

  • katcar0001
    katcar0001 Member Posts: 621
    edited July 2017

    I went off Tamoxifen a week ago after being on it for 24 months, and I think I am having withdrawals... some women do, some don't. I think I am one of those who cannot handle hormones fluctuating all over the place. Maybe I'll do better with consistently low estrogen levels on AIs. I am starting Arimidex now because it is easier for me to get in Mexico than Femara. At least I can take an anti-depressant with it, which I could not do on Tamoxifen. We cannot get Effexor here, so I am taking Lexapro. I also need it for extreme anxiety which is making my insomnia and moods worse. Wishing I had more advice for handling crankiness and insomnia, but those SEs were what convinced me to switch. Horrible food and leg cramps were easily managed with 400mg magnesium oxide (MagOx brand). I would even get hand cramps! Awful! Hot flashes only really bother me at night, so I sleep with ice packs and a fan when they are bad. For some reason, I always get one after getting up to go to the bathroom. Weird, eh?

    Edited for extra word.

  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited July 2017

    I had Mylan the first month. No issue. But got Teva the next month, and I spoke to the pharmacist and asked that they please not switch it up every month. Normally they get Teva. Talk to your pharmacist. Teva and Mylan have different fillers -- that's likely the issue.

    Unrelated note but -- I've been reading about this and know it's been discussed previously on BC.org -- but is it safe to take turmeric with Tamox? My alternative MO -- who is also a two-time survivor -- recommended + my naturopath. I'm kinda getting sick of researching BC. Ha ha. (not)

  • Artista928
    Artista928 Member Posts: 2,753
    edited July 2017

    You can take lexapro and celexa with tamox. I'm taking celexa and have been given lexapro when it wasn't available in the hospital. I would never go back on effexor again. THE worst se's and long too when slowly weening off of it.

  • katcar0001
    katcar0001 Member Posts: 621
    edited July 2017

    My friend had terrible withdrawals from Paxil--took her a year to wean off of it, and she went through some really strange mood changes and brain zaps. Effexor sounds like another "strong" SSRI like Paxil. I am not sure how the SSRIs differ from each other. They all sound pretty similar but Lexapro and Celexa seem easier to tolerate from the reviews I've read.

  • Artista928
    Artista928 Member Posts: 2,753
    edited July 2017

    They are often known as the easiest to tolerate. I've been on meds since '95. Tried a lot. Finally settled on celexa or lexapro--along with anxiety meds. Paxil is one not to be taken with Tamox. Somewhere in here is a link to what psych meds highly interfere with T.

  • katcar0001
    katcar0001 Member Posts: 621
    edited July 2017

    Interesting how some SSRIs are okay with Tamoxifen and some are not, but they are in the same overall family. I think the Lexapro is making me nauseated. I may cut the pill in half to 5mg.

  • Trvler
    Trvler Member Posts: 3,159
    edited July 2017

    Mollie: I believe 100% that the muscle issues are Tamoxifen. I have been off it a few times for various surgeries and the muscle pain stops every time. My MO took me off of it once to see and sure enough, the muscle pain stopped. I don't know why she too me off to it to see. She just put me back on it. I guess she was trying to prove I was wrong. But I knew that's what it was all along.

  • ndgrrl
    ndgrrl Member Posts: 741
    edited July 2017

    I am also having pain on Tamoxifen this 2nd go round on it.(had ovaries removed and went from Tamoxifen to Armidex to Femara now back on Tamoxifen) I am wondering if the Mylan brand is the culprit where before I was on Teva and Watson brands.

    Anyone try Clariton to help with the pains?

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2017

    ndgrrl...the ovary removal will probably add more menopause symptoms that have nothing to do with meds. You had more estrogen in your system to be used by those cells that are not blocked by Tamoxifen such as your bones. I wouldn't expect to feel the same going back to Tamoxifen as a result, because you aren't the same this time!

  • lala1
    lala1 Member Posts: 1,147
    edited July 2017

    EastcoastTS---I'm taking Tamoxifen and turmeric. My MO researched it thoroughly and decided he was fine with it. I think I may be his first patient to have ever asked! And he's been practicing for decades! Turmeric was a lifesaver for me. Without it, I don't think I could have stayed on Tamoxifen due to the muscle/joint pain. I'd say once I started it, I went from a pain of about 6-7/10 to about a 1-2/10. I also checked with my holistic doc, gyn and BS and everyone was ok with me taking it.

  • Artista928
    Artista928 Member Posts: 2,753
    edited July 2017

    Katcar- You can take 1/2 in the am and 1/2 in the am to see if it helps with nausea. If you're taking it on an empty stomach maybe try eating something first.

  • Starlight7
    Starlight7 Member Posts: 3
    edited July 2017

    Singin-me:

    Same here, I have been taking Tamoxifen for almost 2 years and just lately feel so exhausted. I could go to sleep any time of he day, but the afternoon is the worst. Concentrating at work has also become a problem. I try to eat healthy, avoiding sugar and eating my veggies. I take Biotin and maybe need to add some Vitamin B12.

    Oh, and I'm also turning 48 soon :)

    Steffi

  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited July 2017

    Lala1:

    My alternative MO (who is two-time BC survivor) recommended Turmeric and a naturopath has as well! I think my "main" MO would poo-poo researching any supplements. Lucky you. Idk. At my next visit (I'm still kinda new to this but not to supplements! ha ha) I'll ask her.

    I also take some other goodies if anyone is ever interested. I guess that actually goes over on the alternative forum. I've always been a bit of a supplement hound.

    Did you get tested for Tamoxifen metabolization? Endoxifen, is that it?

  • Amy9848
    Amy9848 Member Posts: 15
    edited July 2017

    Wow. After reading all of this, perhaps its not the Tamoxifen, but the effexor causing all the side effects. My MO recently lowered the dosage because I asked to be weaned off. I just couldn't do it. I am sticking to my "lower" dose but will check with him at my Aug appt. I will also ask about Tamoxifen metabolization! Since diagnosis, he has not even drawn a vial of blood from me. I ask EVERY time. I am also going to add Tumeric and B12. Maybe that will help.

  • lala1
    lala1 Member Posts: 1,147
    edited July 2017

    I've never been tested for Tamoxifen metabolization? I just figured it must be working because I have SEs and no recurrrence (so far!). I'm doing pretty good on it but in Sept I'll find out what my next five year step is when I do the BCI test.

  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited July 2017

    Well, I'm on my third month of Tamox (I know that's very early) and I have experienced no SEs yet really. Of course, then I worry about whether it's working! LOL I did take a test for metabolization that someone here gave me the info for (Kaikos??) -- it was $99 and an oral swab. You do have to list a doctor but they send results to both you and Dr. I'm sure my MO was like: what the heck? But it's better she get the idea of how I manage things! Ha ha. However, I asked the Johns Hopkins "Ask An Expert" nurse (she's great) and she said to ask them about the blood test at next appt if I have no SEs. I know some don't but it must be so many that DO if she suggests to check that I'm metabolizing it. My oral swab said yes.

    I exercise (in moderation, I'm not a junkie) and also take Magnesium aside from the normal stuff supplements. All of that may help with SEs. I've heard that iCool is good for hot flashes. I have yet to have one.

    However, I will say that I think I've already entered menopause -- I was peri for a few years and hormone levels seem to say "almost there". So maybe I had SEs before (sleep issues, etc.) and it's just rolling along now. That could be it. Idk.

  • ndgrrl
    ndgrrl Member Posts: 741
    edited July 2017

    Lala- Can I ask you what dosage of Tumeric you take and what kind? My MO told me it was up to me if I wanted to take it. She leaves everything up to me such as aspirin when I asked if I should be taking a baby aspirin with Tamoxifen- she said I could if I wanted, no that I should.

    Thanks

  • Lovinggrouches
    Lovinggrouches Member Posts: 530
    edited July 2017

    I take Gaia turmeric with black pepper from vitamin shoppe. It's much cheaper through amazon online though. Has really helped my severe hip pain from taking the tamoxife

  • Lula73
    Lula73 Member Posts: 1,824
    edited July 2017

    Has anyone had erratic and frequent periods after coming off Tamoxifen? Quick rundown of my situation-I have a Mirena IUD and started having some bleeding more often and heavier than my once a quarter super light period I was having. Went to OB/GYN for yearly checkup and ended up diagnosed with BC. A BMX with immediate DIEP flap recon later I'm put on Tamoxifen and MO says not to remove mirena as it would help protect against possible uterine cancer SE. Period goes back to its quarterly arrival. Had to discontinue Tamoxifen 2.5 months later as it was causing DVT and bilateral pulmonary emboli and now have to take Xarelto ("smart" blood thinner). I get my period - it's heavier than usual and lasts all week. 2 weeks later I get it again. Then 1.5 weeks later again. What is up with that? Anyone have this happen to them after stopping Tamoxifen? I have an appointment with MO next week and I'll be sure to ask him but hoping you ladies would have some goodinsight in the meantime😬

  • jpBCfree
    jpBCfree Member Posts: 78
    edited July 2017

    I get my daily tumeric via a couple cups of organic Tumeric Ginger Tea after dinner. Special brew by the amazing online tea company The Art of Tea, they name the variety Bright Eyed! http://www.artoftea.com/tea/collections/wellness-c...

    Not only is it delicious but also very good for you! Ginger and Tumeric (with little black pepper to activate) and cinnamon are the ingredients.

    Since giving up wine and alcohol since my BC diagnosis, I've taken up hot tea drinking and have to say this tea is so delicious that I find myself enjoying it like I used to a nice glass of wine! Never thought I'd say that!

    Cheers.

    jp




  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited July 2017

    Thanks, JP! I'm going to try the tea. ;)

  • lala1
    lala1 Member Posts: 1,147
    edited July 2017

    ndgrrl--I also take the Gaia turmeric ( I think it says extra strength on the box). I buy it from Amazon since it's cheaper than Vitamin Shoppe. My holistic doc gave me these instructions: Take 1 capsule (500mg) a day for a month. If you get relief, continue with that dosage. If you don't get relief, go to 2 capsules a day. If you get relief, continue with that dosage. If you don't, then it's probably not going to work for you.

    As to aspirin, my MO told me from day one to take a daily baby aspirin with Tamoxifen since it has a known SLIGHT risk of blood clots. On a daily aspirin, I bruised so easily! I could rest my chin in my hand and get a bruise! So he said go to twice a week....that all docs feel twice a week works just as well as daily without the severe bruising. He also makes me take a good quality fish oil to help prevent blood clots. So far, so good!

  • farmdream
    farmdream Member Posts: 84
    edited July 2017

    Has anyone experienced different/worse SE after stopping and then starting Tamoxifen?

    I stopped for about 5 weeks for my exchange surgery.

    My MO wanted to try to determine which of my symptoms were coming from tamoxifen.

    I have been taking again for 2 weeks.

    My emotions are on overdrive, cry easily, seem more anxious and on edge, lack of focus and feel nauseous.

    I also still have my original ones, insomnia, leg cramps, mild hot flashes.

  • BucsGirl
    BucsGirl Member Posts: 191
    edited July 2017

    I've been on Tamoxifen since February. I know it hasn't been that long, but I'm still having major menopause symptoms from this medication. I get hot flashes and night sweats. I don't sleep very well. That may be why I'm fatigued all the time. I'm also taking Herceptin every 3 weeks until the end of the year. Does anyone have swollen ankles? I've been getting that too. Maybe it's the combination of the Herceptin and Tamoxifen.

    Oh, and let's not forget weight gain. I swear that I gain about 2 lbs. every 3 weeks (when they weigh me in at the infusion center). I want to exercise more, but can't after my recent surgery. I had an L5-L1 discectomy because it was pinching my sciatic nerve. The sciatica pain is gone, but my leg is still numb. The nerve is still healing. I'm also going through lymphedema therapy for my breast, and I'm getting fitted for one of those flexitouch pumps next week. There are just too many appointments (before work or after work). I'm all pooped out by the end of the day.

  • klrsar
    klrsar Member Posts: 4
    edited July 2017

    I am on my third month of Tamoxifen after 7 weeks of Rads, no chemo. I am post menopausal (taking it because of osteopenia), and the hot flashes have come back with a vengeance. Also experiencing accelerated hair loss. I can deal with the hot flashes, but I am concerned about the hair loss. I don't see my MO until October. I am on Tamox for 10 years. Anyone else having hair loss issues?

  • Pi-Xi
    Pi-Xi Member Posts: 348
    edited July 2017

    Hi kirsar!

    I'm not sure I can blame the hair loss completely on tamoxifen, but it really seemed to accelerate after about six months on the medication. I spoke with my oncologist and he supported trying Rogaine. It's a commitment. My issues were mainly in the front and temples. I will know if it's working by the end of summer. I also use a hair loss prevention shampoo. That seems to have reduced the diffuse loss substantially.

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