Bottle 'o Tamoxifen

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  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited January 2018

    I take melatonin every night right before Tamox. I've read something on this site about that actually being beneficial in some way besides sleep. (Can't recall exactly what at the moment -- thanks Tamox!) LOL

  • shelabela
    shelabela Member Posts: 584
    edited January 2018

    does anyone else bruise easier on Tamoxifen

  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited January 2018

    Yes. But I also take Omega 3 and Tumeric, which thin blood.

  • Scrafgal
    Scrafgal Member Posts: 631
    edited January 2018

    I read somewhere that low levels of melatonin could linked to breast cancer risk, which is why night-shift workers might have more risk. Lack of sleep might also indicate (or cause) low levels of melatonin?

  • Lurline
    Lurline Member Posts: 10
    edited January 2018

    Hi all,

    I started Tamoxifen in August after double-mastectomy in June.  I felt fine, no real hot flashes or anything, until 4 months after I started taking Tamoxifen.  In December I suddenly started to get bone pain (whole body).  After sitting for any period of time (like when I get out of the car) I feel like I'm 80 years old hobbling around.  I had started running again and was up to 7 miles but haven't run since 12/6 because the bone pain is so bad and my feet hurt especially badly.  Is this normal?  And if so is it normal to not hit until 4 months into it?

    Thanks!

  • Trvler
    Trvler Member Posts: 3,159
    edited January 2018

    I have taken everything and done everything I can think of. I keep making excuses each night why I don't sleep but I just can't escape the fact that it's the Tamoxifen. I was taking .5 mg of xanax through treatment and got off of that but started again when I was traveling a lot last year. I am down to .25 and I am not sleeping. I also take melatonin before bed and again around 1 am. My sister (I am at her house) says valerian root works for her so I tried that last night and nada. The last time I slept a decent night was just before I started Tamoxifen again after surgery. So I know that's what it is. My doctor wants me off the Xanax. Says it can cause dementia.

  • runor
    runor Member Posts: 1,798
    edited January 2018

    Lurline, I think there is no 'normal' with tamoxifen. You will read some people whose side effects got better with time and those who felt worse and worse. So it could be related to the tamoxifen or not. It's always hard to tell. 

    Trvler, my Hub suffers from relentlessly bad sleep. He can falls asleep alright but never stay asleep. Wakes at 2 a.m. and that's it. He's awake. He has found that if he lays on the floor for 10 minutes before going to bed, letting his spine stretch out and doing a few simple stretches, it helps with some of the aches he tends to get that wake him up and make sleeping miserable. But at this point we are investigating medical marijuana. I know nothing about it but apparently it has been refined down to a science, what and how much you need to accomplish what task. He has developed a years long bad sleep habit and needs something to break the cycle. But I do know how miserable it is to not feel rested! Dragging yourself through the days like a zombie. Ugh. 

  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited January 2018

    Lurline:

    I think others on this forum have said that Turmeric and Magnesium help with joint/bone pain. I take both - not for that, just suggested by my alternative MO -- and I've had little joint pain. Maybe worth a try.

  • Cpeachymom
    Cpeachymom Member Posts: 518
    edited January 2018

    lurline- I’m about a month behind you in this whole thing, and I’ve just started getting some minor pains and stiffness and the dreaded muscle cramps I’ve been hearing about! All very minor so far, but I’m still on steroids for radiation damage, so it’s hard to tell what my actual level of discomfort is. I’m really hoping it isn’t going to get progressively worse! I think not only does Tamoxifen take time to build in your system, but maybe the lack of estrogen takes time to start causing trouble as things wear out

  • shelabela
    shelabela Member Posts: 584
    edited January 2018

    @scrafgal

    Well that would explain my cancer..... i was on 3rd for 19 years. Lol. I did hear something about that though. I should read up on it.


  • Cpeachymom
    Cpeachymom Member Posts: 518
    edited January 2018

    shelabela- 14 Years on the night shift, My only behavioral risk factor. Ironically, I left my job a few months before I found my lump. Yeah, I’ve heard the correlation before, but a family’s gotta eat, right? Not to mention I was carrying our health insurance up to that time. Too bad I hadn’t yet replaced my life insurance before this happened.

  • Tpralph
    Tpralph Member Posts: 487
    edited January 2018

    Yes I've read some of the studies r: night shift and BC. I was 8 yrs out if doing shift work when BC found me. But have done shift work on and off for a good chunk of my career. I also am a poor sleeper. Hard to fall asleep and stay asleep. Was using melatonin until my pharmacist at the cancer centre told me of a study that indicates that melatonin grows er positive BC so I stopped.

    Trvlr There is a long acting melatonin out there. Not sure if it is any better.

    I had joint pain in shoulders elbows hands and knees up until a few days ago. Have just been exercising more over the last week so thinking it is helping with the Tamoxifen se. Either that or my body is just getting used to it. Either way it is good to exercise 😊

  • TWills
    TWills Member Posts: 679
    edited January 2018

    Oh my goodness, Melatonin grows er+ cancer. What a long list of suggested helpful remedies that might actually be harmful. Why is it that we have to stumble across these things. Has anyone else had a Dr or Pharmacist tell them this about Melatonin???


  • Blownaway
    Blownaway Member Posts: 760
    edited January 2018

    shel ababa - yes

  • superius
    superius Member Posts: 340
    edited January 2018

    Wait... so LOW on Melatonin is Risk factor. but taking Melatonin also bad for ER +ve? Bawling not cool!

  • TWills
    TWills Member Posts: 679
    edited January 2018

    About Melatonin, as with anything we should do our own research before believing what we read on this site. I looked into this and found just the opposite...but do your own research and remember, anyone can post whatever they want to here.

  • Scrafgal
    Scrafgal Member Posts: 631
    edited January 2018

    My MO recommends melatonin as a safe option for sleep issues while on Tamoxifen.

  • Legomaster225
    Legomaster225 Member Posts: 672
    edited January 2018

    Mine recommended it too. I always have weird dreams about animals attacking me or people I love when I take it though. Very weird. Could be a pack of coyotes or an alligator... last night it was a fuzzy kangaroo stuck on a fence. I try to limit ithe melatonin if can.

  • Capecodgirl
    Capecodgirl Member Posts: 116
    edited January 2018

    Does anyone have stiffening/cramping of the fingers and hands at night? Then I get shooting pains up to my elbows. This lasts generally through mid-morning at least. My pcp said it was probably from the tamoxifen and prescribed a muscle relaxer (tizanidine 2mg) which helped a lot. But I really do not want to take any long term meds to counteract the tamoxifen if I don't have to.

    All in all I have had an easier time than many on the tamox, and this symptom is not a game changer, it is just uncomfortable and annoying. I am just wondering if it has happened to anyone else, and what you have done about it. Btw i do take magnesium already, so it is not for lack of that.

    Thanks in advance for any advice-

    Barb

  • Trvler
    Trvler Member Posts: 3,159
    edited January 2018

    I think my melatonin is long acting. I agree that exercise helps with the side effects. Really, outside of sleep and hotflashes/chills, I don't have any. But the sleep is big one.

  • runor
    runor Member Posts: 1,798
    edited January 2018

    Capecodgirl, I have not had any hand cramping at night, so far. But I have suddenly developed weird finger/ hand cramps during the day. It's like my pointing finger spasms and pulls itself under my palm. Very weird, very annoying and it's like the strength in my whole hand craps out when it happens. This is entirely new to me. I was about to drain a big pot of boiling spaghetti the other day after several hours of this hand cramping going on. I had dropped several items already. As I looked at that pot of boiling water I thought, hmmm, this could go wrong. So I asked Daughter to do it. I spent all night shaking my hands to try and get the spasms worked out. Blech! I hope for you this is just a phase and it settles down in a while. My leg cramps did, thank god.

  • TaRenee
    TaRenee Member Posts: 464
    edited January 2018

    My hands were doing some really wild cramping last night. Thumb pulled in toward center and pinky pointing out to side. It hurt. Feet were cramping too. I had been getting leg cramps but they have gone away. I hope this isn’t a new normal

  • Trvler
    Trvler Member Posts: 3,159
    edited January 2018

    Are you hydrated? Try magnesium supplements. I take magnesium every night to avoid constipation but supposedly it helps with muscle cramps, too. I rarely get any muscle cramps. Just be careful. It can make you have diarrhea.

  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited January 2018

    So melatonin is not good for ER+? Or it is? UGH!!! I take it although I don't know if it helps.

  • TWills
    TWills Member Posts: 679
    edited January 2018

    I looked it up and couldn't find anything negative pertaining to Melatonin and ER+, I only found good things but I'm no expert in reasearch. I reacted above to another post and had never heard anything bad

  • Tpralph
    Tpralph Member Posts: 487
    edited January 2018

    twills and trvlr, i did not research the melatonin issue, it was my pharmacist at the cancer centre who suggested i stop it as there was one study that showed an increase in tumour size while taking melatonin and it suggested a correlation. I'm not sure of the study, but at the time i figured she knew best so i stopped it.  i take zopiclone the ODD time if i cant sleep.  Magnesium has been shown to help sleep. You coiuld look up "sleep hygiene" on the web which will give you some good safe options.

    And I agree, do your own research, there is lots that support it to decrease estrogen in body - was also why i was taking it at the time in higher doses at 20mg as well as sleep before she told me or suggest i stop. Didn't want to chance it

    I know zopiclone isn't good either that is why i take it only rarely. 

  • TWills
    TWills Member Posts: 679
    edited January 2018

    I actually looked up specifically Melatonin and ER+ cancer and I only found good things and as far as Magnesium, I've taken it for 3 weeks and haven't noticed anything yet, nothing bad or nothing good. I'll keep trying:)

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,689
    edited January 2018

    TWills, how much Magnesium are you taking?

  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited January 2018

    I've read that Melatonin works well with Tamoxifen. Ah, hell, who knows, right?

    Magnesium is great for headaches, too, for those who have them. Many have magnesium deficiency.

  • TWills
    TWills Member Posts: 679
    edited January 2018

    Michelle, 400 to start with, I know I can take more but wanted to adjust a bit and I also have a slight issue with my liver soI need to be careful with that and Magnesium can be rough on the liver.

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