Bottle 'o Tamoxifen

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

    Suzanne50- I'd ask your docs about possibly taking low dose aspirin if they feel you should stay on Tamoxifen with your profile. Best wishes.

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

    beach2beach - on your question about should the doc test your hormone levels while on tamoxifen: tamoxifen does not lower estrogen levels. It blocks the estrogen at the cell receptor level so the cells in your body can't use it. If it doesn't enter the cells it can't feed the cancer. Often blood estrogen levels are elevated in women taking tamoxifen due to the blocking action as your body keeps making it. Aromatase Inhibitors on the other hand stop your adrenal glands from producing estrogen but do nothing for the ovaries - that's why they're only indicated for women who are post-menopausa, women who've had their ovaries removed or who have their ovaries suppressed.

    Suzanne50 - so sorry to hear about this. As someone else stated, tamoxifen can cause blood clots and blood clots can cause a stroke. Hopefully they went ahead and did a full body CT or at least a chest CT to check for clots elsewhere in your body. They've also hopefully put you on an anti-coagulant (Coumadin/warfarin, Lovenox, Xarelto, Eliquis, etc) for the next 6 mos. Clots typically resolve in 12 weeks but therapy continues for an additional 12. Aspirin of any strength, ibuprofen/Advil/Motrin, Aleve as well as any prescription NSAIDs should be avoided while taking the anti-coagulant as it can increase the risk of a bleed and make it more difficult to stop one.

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  • shelabela
    shelabela Member Posts: 584
    edited October 2017

    Haven't posted here yet, I started Tamoxifen Wednesday Oct 11 and I have to say the Hot flashes have gotten a lot worse then they were. For you that have been on it for awhile do they let up at all?

    Thanks

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  • tinker-bell
    tinker-bell Member Posts: 62
    edited October 2017

    hi Shelabela we did chemo at the same time, hope you’re feeling better! I’ve been on Tamoxifen since the 7th, zero side effects so far except for achy legs sometimes What I’ve heard from friends is weepiness etc kicks in around week 2. Some say up to 3 months for you to know how it’ll be. Hope the hot flashes ease up!

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  • ndgrrl
    ndgrrl Member Posts: 741
    edited October 2017

    Effexor works great to slow down the hot flashes.

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  • shelabela
    shelabela Member Posts: 584
    edited October 2017

    Thanks Ladies! Me too!

    Ndgrrl where did you get that stuff?

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  • ndgrrl
    ndgrrl Member Posts: 741
    edited October 2017

    Shelabela my MO prescribed it for me. I take the lowest dose at 37 MG. It is also used for anxiety and depression but works great for hot flashes.


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  • Legomaster225
    Legomaster225 Member Posts: 672
    edited October 2017

    Aww man. I am starting tamoxifen tonight. I don’t want anymore damnweepiness. This cancer thing is really starting to wear me down.

    Do you ladies take your pill at night or in the morning? Does it matter?

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  • tinker-bell
    tinker-bell Member Posts: 62
    edited October 2017

    hi legomaster2 - you may be totally fine - I believe everyone reacts differently! I have felt a little emotional but nothing major. On 2nd week now. I think taking it at night helps because you sleep through more of the side effects - unless it keeps you awake. I take mine at night and sleep OK. So far, so good....

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  • shelabela
    shelabela Member Posts: 584
    edited October 2017

    So I have not had a period since Feb when I started chemo and now a week after starting this drug I am spotty and very crampy! Should I call my MO?

    Also I have a copper IUD, I read that tamoxifen affects birth control.... Will it affect this? Ugh I hate this. I want it to all go away!

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  • runor
    runor Member Posts: 1,798
    edited October 2017

    Shelabela, tamox stopped my periods, boom! The leg cramps I had at first have eased off thankfully. However the night sweats, holy cow! Unrelenting. And my hair is falling out. And I am having bladder disturbances, like constant leaking and a random bladder infection (UTI) and I'm pretty sure these are tamox related. I have not been weepy, but every now and then I look at my husband (when he has annoyed me) and wonder, how is it that I haven't shot you? I'd say I'm homicidal more than weepy.

    I take HALF a pill every morning, washed down with coffee. No, ym doc did not give me permission and does not know I'm taking half a dose. But at half a dose I am having all these lovely effects so I have to think it's doing something in my body. Something annoying.

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  • Legomaster225
    Legomaster225 Member Posts: 672
    edited October 2017

    Thanks Tink. I’m not sure I’m ready for this new chapter but we will give it a go.

    Shelabela - I wish it would all just go away too. I keep thinking they are going call and tell me it’s all a terrible mistake. I wouldn’t even be mad I had the BMX for nothing. I’d just say thank you and walk away. I would call your MO though. Just for peace of mind if nothing else.

    Runor- sorry you have so many side effects. Hopefully they will ease up for you. How long have you been taking tamoxifen?

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  • runor
    runor Member Posts: 1,798
    edited October 2017

    Legomaster, I started tamox August 2017. So not that long. I am hoping some of the SEs will ease off as my body 'adjusts'. If bodies do that. So far the SEs are annoying, but not devastating. And like I said, the leg cramps are not as bad, so that gives me hope that the other SEs will ease off too. For years we've been saying that we have to replace the drafty patios doors in our bedroom. Now, at night, bathed in sweat, when I toss the covers off I give thanks for the little breeze blowing in from those leaky patio doors! Ahhh, relief is a cool breeze!

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  • Scrafgal
    Scrafgal Member Posts: 631
    edited October 2017

    Greetings!

    I just started Tamox about 3 weeks ago...will stop this week, in advance of my exchange surgery on Nov2, and the start taking it again.  So, far, I've had minor hot flashes, a couple of ice pick headaches (lasting 5 -10 minutes) and a bit of dizziness-not major dizziness but noticeable.  I take my pill in the morning and my MO suggested that I make sure that I drink a lot (16 ounces) of water in advance of taking the pill.  Dehydration effects overnight could have caused some of the dizziness.  Well, after changing my regimen to soak up the water in advance, I haven't had a headache or dizzy spell!  I am at the beginning of this journey, but so far, it seems okay.  I know that this could change but with this whole BC thing, I just take one day at a time and celebrate the little victories!


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  • Scrafgal
    Scrafgal Member Posts: 631
    edited October 2017

    btw

    I drink 2 liters, at least, of water everyday but the issues with Tamox in the morning is that I don't drink water during the night when I am sleeping!  So, we all are a little dehydrated first thing!

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  • Legomaster225
    Legomaster225 Member Posts: 672
    edited October 2017

    Thank you Scrafgal. I could definitely do better with my water drinking. I drank a ton during chemo but I have kind of slacked off.
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  • molliefish
    molliefish Member Posts: 723
    edited October 2017

    I've been on tamoxfen just shy of 2 years. I take it at 8 pm every day. I also take a glass of water to bed every night. Have since my first pregnancy. The side effects are def. susbsiding after this much time but you also learn tricks along the way to defeat the se. I can sense a cramp coming on so I stretch or move the right way and it stops. Night sweats have gone from multiple per night to one or two. I was in menopause prior to being diagnosed so nothing to report there. I have my follow up with my gyne on Thursday to see what the biopsy says about my 19 mm endometrium and what to do about it ifanything. Hang in ladies. Tamoxifen is always A better option than Chemo imho.

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  • Suzanne50
    Suzanne50 Member Posts: 280
    edited October 2017

    Hi ladies-

    Just a quick update on my double vision and possible stroke. My neuro-opthamalogist was skeptical as to whether I actually had a stroke or not. He didn't think my MRI was clear and wanted to discuss with radiologist. My oncologist does not want me back on tamoxifen since it can cause blood clots. He ordered a sonogram of my neck and legs and is sending me to a cardiologist for an echo-cardiogram. Seeing my neurologist tomorrow - he put me on a low dose of aspirin to take daily.

    So still trying to figure out all of this. Doesn't look like any easy answers. Thank you for your input ladies! I am hoping my double vision clears up soon. It's been 6 weeks! It's very debilitating.

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

    Oddly, my arm cramps have eased lately. I am not sure why. They were horrible for a while there. Leg cramps are easy to stop. The second you feel one coming on, curl your toe towards your body. It's instinctive to do exactly the opposite but that makes it worse.

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  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited October 2017

    Lego:

    I take at night -- last thing before bed. I had headache (very minor) when I first started and, really, that's about it so far. I wonder if it's even working! Just try and don't worry about SEs because not all have them or anything they cannot manage.

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  • YazMar74
    YazMar74 Member Posts: 21
    edited October 2017

    Has anybody experienced extremely chapped lips and hives around the lips? - At week 3 of taking it - I developed what seemed like an allergic reaction - and I know its the Tamo - so I been taking Zyrtec every day and it stops the hives around the lips and stops the itching in my face. BUT the other problem is my severe chapped lips - when I say severe - I drown them in lip balm every 30 mins - and several times a day am literary pulling skin off the lips, its not payful - a bit irritating - but withing a few hours am pulling skin off it just sits there.... I cannot wear lipstick it cackes up on the peeling skin - Anybody had this experience?/

    That and major leg cramps at night.

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  • Scrafgal
    Scrafgal Member Posts: 631
    edited October 2017

    I have not had chapped lips, but my MO recently told me that Tamoxifen is VERY dehydrating. The pharmacist didn't mention this to me, and I don't think that I saw this in the documentation that comes with the medicine. I drink a lot of water but even I had to up my game, especially in the morning when I take the pill. Leg cramps and chapped lips seem consistent with dehydration. Hives...not so sure!

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  • shelabela
    shelabela Member Posts: 584
    edited October 2017

    So I see a lot of us talking about leg cramps. I thought I was losing my mind about this. I have been so achy, I thought it was because I went back to full duty at work and so forth. Now I am not so sure. I wonder if it is from the Tamoxifen.


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  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited October 2017

    Magnesium helps with leg cramps I think some have said here.I was already taking because it also helps with migraines, and I've had no leg cramps. Also, bananas (potassium) help with these, too.

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  • beach2beach
    beach2beach Member Posts: 996
    edited October 2017

    In the beginning the roof of my mouth was very sore for at least the first two weeks but has been gone since then. My issues seems to be focused more with periods. sigh...hope that levels off too.

    Magnesium is a great relaxer for muscles and sleep. It may take a while to see benefits though so don't give up to quick.

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  • Katjadvm
    Katjadvm Member Posts: 137
    edited October 2017

    Hello. I am new to this discussion. I took tamoxifen for about 6 months and then stopped in preparation for my diep flap surgery next week. It made me tremendously anxious, like my heart was going to leap out of my chest. I haven't seen anyone else list that as a side effect. just wondering if anyone had anxiety issues on it. Thanks


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  • Catkin
    Catkin Member Posts: 42
    edited October 2017

    Hi Katjadvm; Some people (including me) certainly have anxiety or low mood on Tamoxifen. Because I'm lazy to re-type it here is a quote describing my side effects from my post in July 2017.

    "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. Everyone reacts so differently."

    I hope this is of interest, good luck with the surgery next week.

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  • Tpralph
    Tpralph Member Posts: 487
    edited October 2017

    Hello all! I just want our introduce myself. I'm 51 was perimenopause prior to chemo and now no period last month. Starting Tamoxifen in 4 weeks and reading everyone's posts. It is giving me somewhat of an idea of what's in store so thank you.


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  • shelabela
    shelabela Member Posts: 584
    edited October 2017

    Period that I thought I was having was only mild spotting. So all is normal. MO said mild spotting was normal when you start it. I am only 44 and not near ready mentally to tell myself I am in menopause but I think Chemo has sent me there early. I am done having kids so that is a good thing. And I do not miss my periods as they were very heavy and a lot of pain.

    The leg cramps and lower back pain are still very painful, I will try the magnesium and see. Thanks for the tips!

    Welcome Katjadvm, and Tpralph! Sorry you are joining us but welcome all the same!

    Hope all you lovely ladies have a great weekend!

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  • Labtech47
    Labtech47 Member Posts: 16
    edited October 2017

    hi katjadvm, I too have anxiety that has went into turbo mode since starting tamoxifen. It has gotten so bad I had to start taking Ativan , which oddly enough has helped my hot flashes. The anxiety is making me feel like I am going crazy! I started to take my tamoxifen at night to lessen my side effect of crazy being too noticeable at work. My coworkers have noticed changes in me not only with my mood but also mention that I seem fogged and not as sharp as I used to be. I also have the bone pain and leg cramps that are so bad that my doc prescribed Celebrex and flexeril. So to take one tamoxifen pill I also have to take the 3 prescriptions mentioned above along with vitamin d and magnesium supplements to counteract the side effects. One pill requires five pills to counteract its side effects. Just ugh!

    One pill I was not prescribed though was something for osteoporosis. My dexascan came back that I have osteoporosis and my MO just told me to increase my vitamin D. Does anyone else find that odd?

    Hugs to all

    L

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