Bottle 'o Tamoxifen

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  • ndgrrl
    ndgrrl Member Posts: 741
    edited June 2017

    Ade- Did the L Theanine help with the night terrors? I am having the worst dreams while on Tamoxifen and my sleep is so rotten because of it.

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  • ndgrrl
    ndgrrl Member Posts: 741
    edited June 2017

    When I had my Ovaries removed in 2015 when I was first on Tamoxifen, my MO had me stop Tamoxifen for two weeks prior to surgery and a week after.

    When does everyone take their Tamoxifen? I have been back on it a month now and between the crazy dreams. Hot and cold and hot and cold and not sleeping well I am very tired. I take mine before I go to bed. I wonder if taking in the morning would help of if that would just make me more tired at work?

    Thanks

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  • Ridley
    Ridley Member Posts: 634
    edited June 2017

    I take it half in the morning and half at night. Have 10 mg pills instead of 20 mg.

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  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited June 2017

    I take it at night. Has not hurt my sleep -- which is not perfect -- but it may even help it a little. I decided to take it at night because some said it made them sleepy. I also take melatonin, too. But that's it for sleep aids.

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  • ndgrrl
    ndgrrl Member Posts: 741
    edited June 2017

    someone posted about taking Vit B 12 to help with the tiredness of Tamoxifen. I never noticed the doseage.?I know it was twice a day.

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  • molliefish
    molliefish Member Posts: 723
    edited June 2017

    I take vit D and b 12. They don't seem to make any difference but I wonder what it would be like without them. I still only suffer from muscle cramps and there is no pattern. Sleepin I my calves, working out on my ribs, back, feet and legs..... It is what it is.
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  • Artista928
    Artista928 Member Posts: 2,753
    edited June 2017

    Try magnesium for cramps.

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  • molliefish
    molliefish Member Posts: 723
    edited June 2017

    I think I'm ready Arista. They can be quite painful and I seem to have bruise on my ribs fromthe last ones.

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

    My pcp gave me an rx for dicyclomine 10 mg for cramps I get in my lower abdomen, probably uterus. I take as needed when it's bad. Rather than kicking Tamox to the curb I'd try rx if other things you like to try fail.

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  • Reckless
    Reckless Member Posts: 112
    edited June 2017

    My cramps went away when I switched from 20mg once a day to 10mg twice a day. Maybe discuss with your MO?Magnesium did not do anything for me.

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

    I still have bad arm cramps but I can stop a leg cramp dead in it's tracks. You just curl your toe TOWARDS your body rather than away, which is what you want to do when you get a cramp. Stops them cold.

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  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited June 2017

    I'm 49 and according to hormone levels, nearing post-M. But not there yet fully so on Tamoxifen. Also better for my bones, so I may be on that for a while versus switching to AIs. TBD.

    My question for you guys: how does your team decide if you need more?

    By that I mean, injections to suppress ovaries or removal? Does your MO look at hormone levels and make suggestions like adding another step? Or is that usually done only if you're BRCA+, high risk, etc. My gyno said ovarian anything was not indicated for me due to negative BRCA status, but that does not seem to be the case from stories I've read here. But what do I know???!!!

    I guess I'm saying: is tamoxifen enough?

    Thanks for helping!

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  • ndgrrl
    ndgrrl Member Posts: 741
    edited June 2017

    East Coast- I was dx at 44- started on Tamoxifen, had my ovaries out because they grew to the size of baseballs. They were luckily not cancer. I bucked going on an Ai and finally a year later started Armidex and then Femara- both did not agree with me so back on Tamoxifen. My former MO told me that more and more women are doing ovarian suppression and then an Ai or having ovaries removed. I was a candidate because of my medical condition but also because of a strong family history of ovarian and breast cancer though we are BRACA negative. 4 of us were dx with breast cancer in 2013 and we have yet to know why. We are all age and physically different. Only thing they connect us with besides blood is stress. Each MO is diff and each cancer center is diff. My new MO told me they had no way of knowing if Tamoxifen would protect me better than an Ai as everyone is diff and everyone's body reacts to these drugs differently.


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  • Ade
    Ade Member Posts: 740
    edited June 2017

    ndgrrl - no the L-Theanine didn't stop the night terrors but I felt so much better in the daytime. Now that I am off all of my cancer meds I sleep well. I know not all can do that - but all 3 meds gave me insomnia & night terrors. Melatonin helped me GET to sleep but that's all. Sorry you are going through that!

    Reckless. - you may not have taken a high enough dosage of Magnesium or it may not have been one that is easily absorbed. You might try a higher dose of a time released absorbable magnesium version. Most people are not getting nearly enough magnesium since it is not as readily available in our food sources due to soil depletion. Magnesium has reduced my migraines.

    Artista - my Dicyclomine prescription works wonders for my spastic colon (which feels like LABOR pain!) though since taking probiotics I hardly ever need it anymore!


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  • Pamela23
    Pamela23 Member Posts: 510
    edited July 2017

    Singin-me--have you had your iron levels taken lately? If you do, ask for your ferritin level too. Sometimes you can be anemic because of low ferritin that isn't reflected because your iron levels are normal.

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  • iatigger
    iatigger Member Posts: 447
    edited July 2017

    Hi all, curious how many in this Tamoxifen group have gotten the crappy side effect of endometrial cancer? I have been on it for 4 1/2 years when I had some abnormal spotting. Got it checked out and the initial biopsy showed just polyps. So had a D&C to get rid of those and the pathology came back as endometrial cancer. So hysterectomy is my next adventure. Hoping all is contained.

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  • gargengirl09
    gargengirl09 Member Posts: 46
    edited July 2017

    iatigger Have been having spotting recently, and cramping for a few months, so that lead to an u/s that shows my endometrial thickness at 11. It did not show any polyps, but I'm not sure u/s can show those. Shows a small fibroid and some cysts as well. Waiting to see next steps from OB/GYN tomorrow. I have been on and off Tamoxifen for the past year. I hate how it makes me feel.

    I am also in Iowa. Feel free to PM me.

    Best of luck to you.


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  • stephilosphy00
    stephilosphy00 Member Posts: 386
    edited July 2017

    Hi all, I've been taking tamoxifen for one and half months. Two weeks ago, I started having sciatic and lower back pain on cancer side come and go every couple days, the whole spine also feels stiff all the time. I have the pain when I sit and laying down and feel much better when I walk. I had sciatic pain before diagnosis but it didn't come with that aching lower back pain.

    It is not only annoying but also make me nervous if there is possibility of mets. Can it just be a SE of tamoxifen?

    Thanks!

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  • molliefish
    molliefish Member Posts: 723
    edited July 2017
    Off the top of my head I'm going to say that there are a ton of different side effects related to the effects of tamoxifen. You are no longer in hormonal balance and your body is trying to adapt. I have been on tamoxifen for almost 19 months. At first I had no side effects but as time goes on my side effects mimic menopausal side effects. Thus I have lots of muscle cramps that I never used to get. It takes me a few minutes to get going in the morning sometimes due to stiffness and tiredness. Is this tamoxifen? I dunno. I'm 52 and instarted menopause at 47. Is it residual chemo damage? I'd be willing to bet yes. That an aging. Saturday I went out to water my new trees. With a full 2 gal jug of water I finished the first tree then I got a spasm/cramp in my lower back sciatica area. I barely finished watering the last three trees. It feels like someone is sticking a twig into my left iliac crest. Today was better and I'm hoping to get back to my crossfit wod tomorrow. It's anyone's guess as to what caused you sciatica pain but at 6-8 weeks I thinking it's not the tamoxifen. I'm sorry you have to take this drug though. Just like me.
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  • canvasmaker
    canvasmaker Member Posts: 3
    edited July 2017

    I'm supposed to start tamoxifen after bombing out on arimidex (7 months) and femera (10 days). I'd love to hear The SEs from tamoxifen worry me but I also worry about recurrence. Would love to hear from others who have some experience - both good and bad -- with tamoxifen.

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  • ndgrrl
    ndgrrl Member Posts: 741
    edited July 2017

    canvas- I also was on Arimidex and Femara and am now back on Tamoxifen which I find is much more doable than either of those. I never tried the 3rd Ai not sure why my MO did not try that as well. Good luck!

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  • RFTexas
    RFTexas Member Posts: 4
    edited July 2017

    I was diagnosed with ILC in September of 2015. I had a lumpectomy and afterwards I found out that the cancer was stage 3 and had spread to my lymph nodes. I went through radiation in the spring of 2016 and I started Tamoxifen in April of 2016. About a month after starting this med my depression and anxiety went off the charts. My psychiatrist prescribed something and my mood stabilized. The worst side effects have been the hot flashes and fatigue. I also feel achy a lot (almost like having the flu) and I seem to get sick all the time. I also get the usual brain fog. I'm most concerned about the fatigue, achiness, and getting sick so much. I'm planning to talk to my MO about this but I wanted to get some input/feedback first. Has anyone had similar side effects?

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  • superius
    superius Member Posts: 340
    edited July 2017

    I have been on Tamoxifen since Nov 2015, which is about19 months. At the beginning, the Hot Flashes was more noticeable. And I had some problem staying asleep. Now my Sleep is pretty normal (still need to sleep earlier & stay asleep longer!) & I rarely have Hot Flashes. I only get Hot Flashes once in a while.

    My hair is back to normal. It was curly & thicker when it first came back.

    And it's pretty funny actually whenever I have them during church choir -- since I have all these Oncology people around me: 3 Researchers (I found one of their names relating to early research of BRCA!), an Endocrinologist, and a Dosimetrist. One of them sit next to me & I would ask, "is it me or is it warm in here?" Usually they just smile at me knowingly whenever I fan myself... LOL!

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  • tbalding
    tbalding Member Posts: 449
    edited July 2017

    I have been on Tamoxifen for almost a year and still no noticeable side effects. Good luck!

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  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,689
    edited July 2017

    If you take Tamoxifen, you have to keep moving. Exercise will help with the fatigue and fuzzy thinking. It will also keep you fit, your endorphins up and overall improves your health.

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  • ndgrrl
    ndgrrl Member Posts: 741
    edited July 2017

    Hi, I have a question. I am a month on Tamoxifen and tonight I noticed A couple cyst like sores on my crotch area.Anyone else have this problem on Tamoxifen and what did you do?

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  • Catkin
    Catkin Member Posts: 42
    edited July 2017

    RFTexas (and canvasmaker): I started Tamoxifen in Nov 2015 after lumpectomy and radiation treatment. I sometimes had fast heart rate for a few months, gone now. My periods stopped suddenly (I'm 51 and perimenapausal anyway). I have persistent mild ache in lower back/sacrum, no aches elsewhere. Definitely thinning hair. Sometimes I have foggy thinking and concentration. I sometimes have mild fatigue which could be due to shortened sleep from early waking. Most persistent and hard for me is low mood/anxiety/fearfulness and finding anything stressful very difficult to cope with. That varies from day to day, always better in the evening. I don't seem to get hot flushes luckily, and don't seem to be getting sick more often (as you described). Everyone reacts so differently. Good luck with your visit to your MO RFTexas, and to you canvasmaker with starting the Tamoxifen.

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  • Blownaway
    Blownaway Member Posts: 760
    edited July 2017

    RFTexas - if you read my older posts, you will see that I complained of flu like symptoms. My MO gave me a 3 month break from Tamo and none of my symptoms went away. It was decided that the flu symptoms were neuropathy from chemo (CIPN). I now take gabapentin at night and duloxetine in the morning, with very little pain. Hot flashes improved SOMEWHAT after 2 months on Icool.

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  • BlueKoala
    BlueKoala Member Posts: 190
    edited July 2017

    After a six week break for surgery, I'm back on the T-train.

    I'm taking it now straight before bed, and hopefully the nausea that I had been feeling on and off won't be an issue.

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  • molliefish
    molliefish Member Posts: 723
    edited July 2017

    recently I've been having frequent muscle spasm issues. Back, diaphragm, Humorous, and of course calf muscles. Is there anyone who agrees this may be related to long term effects of chemo and hormone blockers? I can't find anywhere that tam is responsible for all this pain in the muscles. I recently suffered a muscle spasm in my back that has had me to the physio Doctor and not working out for a week.
    The physio Doctor said it could be tam but he would attribute t more to age. So sad. I've worked long and hard to stay fit over the last 25 years and more so the las 2 since diagnosis.
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