Bottle 'o Tamoxifen

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  • SLN22
    SLN22 Member Posts: 6
    edited April 2018

    Cpeachymom - so it's okay to take melatonin? I have been so hesistant to take anything in fear of it reacting with the Tamoxifen. I just never know what my restrictions are. Also, I read back to where you were talking about the coconut oil? Does it really help? Dryness has been a huge issue for me

  • Pamela23
    Pamela23 Member Posts: 510
    edited April 2018

    I just started tamoxifen today, I put it off for almost a year. My doctors OK'd me pushing it off until January but somehow it was never "a good time". Today I reached in the cabinet and took it after lunch. Let the fun begin!!

  • Cpeachymom
    Cpeachymom Member Posts: 518
    edited April 2018

    Joshua- I would check with your MO, but mine recommended the melatonin to me. I don’t need it to fall asleep anymore, but it helps me get back to sleep in the middle of the night. I was warned it could cause nightmares, but that hasn’t been a problem, even when I was taking a full 10mg every night, trying to combat the steroids that were keeping me up. Now I just take 2.5 mg once in a while. And yes, many ladies on this site recommended the coconut oil, so that’s what I’m doing and it’s working for me. That and drinking LOTS of water!

  • Legomaster225
    Legomaster225 Member Posts: 672
    edited April 2018

    Pamela, I hope it goes well for you. Many women do not have major side effects. You hope you fall on that side of the statistics. If you do have issues you have a big support group here. It does have a good track record of reducing recurrence. I try to focus on that

  • shelabela
    shelabela Member Posts: 584
    edited April 2018

    Pamela, i hope things go good, remember to drink lots of water when you take it and all day. Stay hydrated. I also found it helpful to keep a journal to write down any SE.

  • VL22
    VL22 Member Posts: 851
    edited April 2018

    Pamela - I’ve been on Tamoxifen for a month with no side effects. I understand they can appear overtime, but for right now I am good. I am drinking a lot of water and I’m an exerciser, so maybe this is helping.

    Wish you luck!!

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

    Sleep is the big one for me, too. I see my MO today and I am going to talk to her about it. Melatonin doesn't really do it for me and she wanted to put me on Effexor. I don't want to take an antidepressant. I can still at least orgasm even if I have no sex drive. I am not putting the final nail in that coffin. Gabapentin has also been mentioned by my GP but others tell me that's for nerve stuff. I will report back. My MO is kind of useless so my expectations are low.

  • shelabela
    shelabela Member Posts: 584
    edited April 2018

    trvler, i am on the 2nd week and so far no change in the orgasim area. I sure hope it doesn't

  • ThreeC
    ThreeC Member Posts: 92
    edited April 2018

    Ladies, My MO has a sign in her exam room that has helpful hints. #1 is find something to laugh about every day. I have to say reading all your posts gives me a 😂 laugh every day. I admit I have developed a perverse sense of humor.....

    Egads- I just visualized a tiny little group of Red Devils pushing a leg around....maybe they were red Tasmanian devils...👹👺👿😈

    Veeder- The MO who actually said that she had patients who were happy with vaginal dryness. I thought of Football cheerleaders cheering & yelling "go dryness, Go dryness". I was laughing & my husband thought I was 😜 crazy. 🤸🏻♀️🤸🏻♀️🤸🏾♂️

    Everyone- When I visited with my elderly family I promised myself I would never spend my retirement watching soap operas. Now as a retiree, I find myself spending my days reading posts on constipation. 💩💩

    Runor- I keep a plastic grocery bag on the counter while I'm cooking. My husband thinks it's because I've suddenly become a neat nut. It's really there to hide the hair I pull out of pots, off of plates, etc., etc. Thanks to you, I think I'll wash each hair off, put in in my fridge in a glass jar with a lid & if anyone asks, my reply will be "I've read that aging your hair, then using it to season sauces, provides "natural vitamins" to our 🥘 food.

    Thanks to everyone for sharing & maybe with a little humor we'll all have better days!

    Barbara

  • Siciliana
    Siciliana Member Posts: 127
    edited April 2018

    Hello everyone! I have been on Tamoxifen for about ten months. Not a single hot flash. No side effects at all aside from mild discharge. I have read that some people are poor metabolizers of Tamoxifen, so I asked my onc. if I should have the test for the CYP2D6 genotype and he brushed it off as being unnecessary. Anybody have any input here? Should I seek a second opinion? Or should I just count my blessings that I don't have side effects?

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

    I think you should count your blessings. I remember being on pregnancy boards and women who had no morning sickness always thought they had miscarried. Some people just get lucky.

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

    Can I ask how old you are? My doctor told me something like, because I was not in menopause at all, tamoxifen slammed me into it which is why my symptoms are noticeable.

  • Siciliana
    Siciliana Member Posts: 127
    edited April 2018

    Thanks for responding, Allison! I am post menopausal at 64. I am on Tamoxifen because I have mild osteoporosis/osteopenia and Tamoxifen is supposed to be bone friendly. Of note, when I went through menopause many years ago, I never had a single hot flash then either!

  • gigibee
    gigibee Member Posts: 192
    edited April 2018

    Twillis, do you recc. taking the magnesium at any certain time of day

  • Egads007
    Egads007 Member Posts: 1,603
    edited April 2018

    ThreeC - I only wish there were tiny Tasmanian devils pushing my legs around during exercise.. I could sit back and read a magazine at the gym LOL! I know one thing, the exercises feel like hell some days!

    Love your 'perverse' sense of humour....just about died laughing when you said your retirement is filled with postsabout constipation LOL!!! As for 'hair seasoning' well, might be worth a try...if it doesn't work out you can use it for dental floss...or filling pillows! Thanks for giving me my daily laugh!

    🤣🤪🤣

  • WifeWBC
    WifeWBC Member Posts: 53
    edited April 2018

    Been a few years since I posted on here, which I guess is a good thing. I had my Dx and treatments all in 2014. Been on tamoxifen since mid 2014. My personal SEs have included night cramps in my legs at times, heavy irregular periods, sometimes months apart, and mor recently a prolonged state (2 weeks) of brown discharge after a period. I have also been informed of a polyp that I am to get removed, with no date set for that yet. Compared to others, I'd say my response to Tamoxifen hasn't been that bad. I do have concerns about what is going on in my uterus. The very heavy periods etc.

    I did not search this thread, but wondered if any of you have been advised or told you could reduce your Tamoxifen dosage? I am reading a 2012 article which suggest benefits of lower doses on breast biomarkers, to be the same, whether you take 5mg, 10 mg, or 20 mg dose. It then postulates that reducing the dose would necessarily reduce the side effects. My question is has anyone been told they could reduce their dosage?

    If not, and what this article proposes has some basis in truth, then why not? If the percieved benefits of Lower tamoxifen dosage are the same, and side effects are equally reduced, then surely worth pursuing.

    As a side note, I stopped taking my tamoxifen for a few days, and my discharge has completely stopped. I am strongly considering taking a month off from tamoxifen, as I have read several on here have done.

    My feeling on reading the article, is that if I perhaps maintained a lower dose during my break, then I'd be retaining some, if not all the benefits of the drug.

    Anyone care to comment?

  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited April 2018

    There is a test you can order online (urinalysis I think it was) that I did to test for CYP2D6 . I read about it on here -- and now can't recall the specifics! Try Google. I had to list a doctor, so listed my MO, who brushed off testing too for this.

    (I have few SEs -- some but mild, no hot flashes -- and just did this for my comfort.) Maybe it's baseless but what the hey. I came in at rapid metabolizer I think it was, which is good.

  • TWills
    TWills Member Posts: 679
    edited April 2018

    gigibee, I don’t think it should make a difference but I’m not positive on that. I take mine at the same time I take the Tamoxifen just for convince. 6pm, I have my phone alarm set, which I hate but I think I’d forget otherwise.

  • Cpeachymom
    Cpeachymom Member Posts: 518
    edited April 2018

    wifewbc- I have also read that a lower dose may be just as effective. If you go back to January on this thread there is a discussion on it

  • gigibee
    gigibee Member Posts: 192
    edited April 2018

    thank you Twills! I switched from taking tamoxifen in the evening to the morning hoping it would help with sleep issues. Haven’t seen a huge improvement. Started the magnesium you posted today.

  • TWills
    TWills Member Posts: 679
    edited April 2018

    I hope it helps your hot flashes gigibee, my sleep varies a bit but has gotten better. I fall asleep fine but I wake up a little before daylight, it was much earlier so hopefully this will last a while. I can usually fall back to sleep. Good luck!

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

    Wife: Runor is a big believer in a lower dose. I am sure she will chime in and she is very thorough.

  • gigibee
    gigibee Member Posts: 192
    edited April 2018

    Twills, the funny thing is I haven’t had any hot flashes. I live in the cold Midwest and have been actually hoping for one it’s been so darn cold !

  • TWills
    TWills Member Posts: 679
    edited April 2018

    Gotcha, are you trying it for muscle aches?

  • WifeWBC
    WifeWBC Member Posts: 53
    edited April 2018

    Low Dose Tamoxifen Report

    For those interested in reviewing the article I read on low dose tamoxifen research results, then above is the link. It's compelling enough for me to consider reducing my own dosage. Hope the link works for everyone.


  • Egads007
    Egads007 Member Posts: 1,603
    edited April 2018

    WifeWCB - thank you for posting the article, I’ll definitely be discussing this with my MO. Great info

  • gigibee
    gigibee Member Posts: 192
    edited April 2018

    Twills,muscle aches and insomnia , fingers crossed , neither are horrible but figured I’d give it a shot to see if either improve.

  • sammi2006
    sammi2006 Member Posts: 74
    edited April 2018

    Just picked up my first bottle today and start it after my mirena gets taken out monday. I am a little nervous about starting it, but ready to take it and be done with this chapter in my life.

  • WifeWBC
    WifeWBC Member Posts: 53
    edited April 2018

    I am assuming that most of us considering or investigating Tamoxifen dosage changes fall into those premenopausal. Therefore, had our diagnosis in our 30s and 40s type of thing. Difficult to tell on this forum outside of a little deduction or questioning a poster their age

    While forum has been an excellent source of information for people living with breast cancer, for many years there is always room for improvement. One of the biggest problems, for me personally, which I mentioned several years back, is that we detail all our cancer related diagnosis with indelicate precision, but omit one of the more helpful details which is our age.

    Knowing the age of a poster who may have posted something pertinent to my own struggle, would help me ascertain if it was relevant to my own case. With breast cancer, being able to then compare as many apples to apples, without having to ask more details of a poster, would sure help many of us. Which is surely what his place is about. Perhaps there is a suggestion box I don't know about.

    It's been almost 5 years since I started posting on here, and I still have to guess the age of my fellow cancer strugglers, while the intimate details of their disease are openly shared

    Understand please, this is far from a gripe. I just want this place to evenbetter. Age at diagnosis is a key marker in how breast cancer is treated, and I think it would be useful in helping people navigate this forum.

  • TWills
    TWills Member Posts: 679
    edited April 2018

    Gigibee, I haven’t heard anyone mention that it helped insomnia but I guess it’s worth a try:)

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