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Bottle o Tamoxifen

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Comments

  • chabba
    chabba Member Posts: 3,600
    edited May 2013

    ek re hair loss, My hairdresser suggested Biotin for hair loss when I started tamoxifen and it works.  You can find it at any pharmacy with or near the other vitamins.

  • ek25
    ek25 Member Posts: 8
    edited May 2013

    Chabba - so, you've had hair loss too?  I can't really tell, to be honest, what's from the Tam and what's from stress/surgery.  I do have regrowth that's about 4" long, so I guess that could be post-surgery regrowth, but in general, my hair just feels thin.  Luckily, I was born with super thick, curly hair, so even though a lot of it has fallen out, I still look normal.  

    Thanks for the referral on Biotin.  I've been trying to use natural products ever since this began, but I may need to break that rule if you say Biotin really works.  Thanks!

  • bgirl
    bgirl Member Posts: 435
    edited May 2013

    Dizzy, had the flat spins for 1 day and then it disapeared - during the first week sometime.  Just remember that a lot of the SEs are temporary and change as your body adapts.  A couple have stuck around for me, but mostly just the insomnia and it only effects some people.  So just because you have an SE, try to relax and give it some time.  Often it will go away.  Bit of a rollercoaster, especially at the begining.

  • jo1955
    jo1955 Member Posts: 7,545
    edited May 2013

    ek25 - I also use Biotin - 5000mcg and it really does work.  My hair was thinning really bad and my thick nails were peeling and snapping off.  Others had also suggested this and I decided to try it.  My hairdresser has even noticed the difference.  I have to get my hair cut more often and that is okay.

  • ek25
    ek25 Member Posts: 8
    edited May 2013

    jo1955 - Thanks for weighing in.  I went several months (though, this was prior to any surgeries) with what seemed to be no impact on my hair while taking the Tamoxifen.  Then, I noticed after one of my surgeries, it was like 3 months post birth - my hair was falling out like crazy.  It stopped quickly, but now it just feels thin.  I just ordered some 5000 mcg caps of Biotin on Amazon.  What the hell - I'm already taking a handful of pills every day, what's another?

  • jo1955
    jo1955 Member Posts: 7,545
    edited May 2013

    ek25 - I felt the same way. What's another pill?  I do know for sure, once I am finished with Tamox, there are several pills that will go as well.  The jury is still out if I will stop the Biotin.  I have noticed my skin looks so much better.  To keep it or not to keep it - that is the question.

  • josie123
    josie123 Member Posts: 1,749
    edited May 2013

    Hi, I'm new to this thread and just got my tamoxifen from shop n save.I'm kind of scared to take it but I'm sure I eventually will.Maybe I'll wait for the weekend.My Mo acted like it wasn't a big deal to him if I took it or not.Funny but that's not what my regular Mo said but unfortunately she's on maternity leave until June.

  • jo1955
    jo1955 Member Posts: 7,545
    edited May 2013

    Welcome Josie - Sorry to meet this way.  This is a great group of women who all be in the situation you are.  To take the white pill or not.  The fear.  Each one of use has our own story.  For me, I have been on T since Jan 2011.  I have had very minimal side effects.  Still can't wait until I am finished.  Ask all the questions you can think of.  I am confident someone else will come along and share their experience.

  • justagirl
    justagirl Member Posts: 633
    edited May 2013

     Josie: As a nurse, I look at the grade and type of BC you had, and that you are ER+, therefore you are a candidate to take Tamoxifen. Nothing comes without risks. Many oncologists believe you should take it because you can, not just because you should.

    I'm tossing in my 2 cents and say take it as it will provide your body with more ability to fight if some stray BC cells are floating somewhere around and kill those suckers off.

    Many good things in life have negative side effects for some but not for all. I believe Tamoxifen is a good thing. When I was at your time after surgery I wanted to throw everything I could at BC so it would never ever come back into my life again.  Take it and think good thoughts to your future. If you do have side effects, ask you Dr about them, but try and not let them become the centre of your life.

    Maybe if y ou take or don't take it isn't a big deal to your MO as like over 50% of wommen stop taking it before the 5 years are over due to cost or side effects. And it isn't their body, it's yours!  MO can only guide, not make.

  • josie123
    josie123 Member Posts: 1,749
    edited May 2013

    Thanks for the warm welcome.I appreciate it.I have lot of drug allergies and worry every time I start a new med.This is why I'm waiting until this weekend to start it.I'm sure I'll do fine and if not I'll let the doc know.I've been lurking a little on this thread and read the older posts a lot have had sleep issues.Right now I'm going through that and I'm not even on the med yet.It seemed I couldn't sleep well at the beginning of Rads and now that it's been a week since I've been done the insomnia has started again.I sleep but it's hard to get to sleep and every little thing disturbs me and I find myself waking up several times.

  • chachamom
    chachamom Member Posts: 410
    edited May 2013

    Hi ladies....I've been lurking for awhile.  Have any of you seen the studies re: Tamoxifen and coffee?  I had stopped drinking coffee over a year ago when I went vegan.....but now I'm reading that coffee (whether decaf or regular) enhances the effectiveness of Tamoxifen.  Since it doesn't seem to matter whether it is caffeineated or not......they don't really know what causes the boost in effectiveness.  Also, the study was on Tamoxifen only, so I don't know if when my MO switches me over to an Aromasin (which should be pretty soon according to the plan of 1 year) whether it would be worth going back to drinking coffee.  ????

    http://www.examiner.com/article/coffee-may-help-prevent-breast-cancer-from-recurring

  • gmafoley
    gmafoley Member Posts: 5,978
    edited May 2013

    Josie. I have bad reactions to meds too. My Onc is letting me take half a pill for 2-3 weeks then go for a full pill. I've taken it for 4 days now and notice some extra hot flashes and being a little jumpy. Other than that nothing else new. Take a diary including how you felt before you start - that way you know if a new symptom comes up.

  • Katbird
    Katbird Member Posts: 1
    edited May 2013

    I have been on Tamox for 5 yrs!!!  I did put on about 9lbs, no other side effects though.  Surgeon said I can stop the tamox when my prescription runs out!!!  Maybe I`ll lose those 9lbs.  God Bless all my BC sisters!!!

  • Lacey12
    Lacey12 Member Posts: 2,895
    edited May 2013

    Congratulations Katbird! Music to my ears. Many of us will be very happy when we can post that same message. :). Good luck with the weight loss. I had worried about the possibility of weight gain, but have been able to manage, and even lose a bit of weight, with careful healthy eating and some regular exercise. Hopefully, those extras will melt right off! Vegetable/fruit smoothies in the morning have worked well for my weight management.



    Since going back on Tamox after my three week hiatus, I have noticed that the SEs that were most bothersome have lessened. Tho my sleep is back to being so "twilighty" that I am rarely getting much rem sleep, and memory and concentration are definitely impacted.



    I just find these side effects to be so puzzling in terms of frequency and intensity. I feel I can live with what I've got right now.

  • gemini4
    gemini4 Member Posts: 320
    edited May 2013

    Hi Josie -- I recall from the rads thread that you had kind of a tough time. My suggestion is that you rest up a little longer, maybe another few weeks, to the point where you feel fully recovered. Then start the tamoxifen. I think you're ok having a little breather since you were stage 0. I also think it's a good idea to start it on a weekend. Good luck!

  • colt45
    colt45 Member Posts: 383
    edited May 2013

    My wife just took her 1st Tamoxifen pill last night.



    I have so much homework to do regarding dos and don'ts with Tamoxifen and all the SEs.



    I just want to help my wife and support her.



    Anybody have any info that might be of particular importance?



    Bless you all.

  • jo1955
    jo1955 Member Posts: 7,545
    edited May 2013

    katbird - Big Congrats!  I know I will be equally as excited when I can post the same message.  I am at about the half way point.  When do you take that last pill?

    Colt45 - There are many websites that you can explore for information on the do's/dont's and side effects of Tamoxifen.  Another good source of information is her medical oncologist or as you will see on here as MO. Each one of us have had different experiences with it.  One of the big no-nos that comes to mind is no Benadryl.  It has been know to lessen the effectiveness of Tamox.  Joint pain, weight gain and hot flashes are some of the more common ones I have seen posted. This site is also full of good information.  I know someone else will come along soon and help out as well.  Come here often and ask all the questions you like.  They will be answered.  I wish your wife the best of luck.  

  • chabba
    chabba Member Posts: 3,600
    edited May 2013

    Colt45 - The SE's for tamoxifen seem to vary widely from none to severe as well as by type among those taking it.  Everyone seems to react a little differently.  This is a good  place to ask questions about how to cope with the SE's as they develop.  Good  luck to you both.  As much as we all hate to see new members have a need to join this and other BCO topics, we still welcome you and will be here for you when you need us.

  • Cuetang
    Cuetang Member Posts: 173
    edited May 2013

    Hi folks! I just found this thread so probably need some serious time to catch up on things. I just filled my tamoxifen prescription (looks like Watson labs) and now am deciding on when best to take it (night or day). Along the way, I picked up some biotin as well. Do you take the biotin together with your tamoxifen? And yes, I probably could've started my first pill today, but decided to procrastinate it another day. :)

  • jo1955
    jo1955 Member Posts: 7,545
    edited May 2013

    Cuetang - Welcome to the awesome group.  Your question about when to take Biotin?  It is entirely up to you.  I also take it and just put it with all my morning pills which does include Tamox.  Which tells you I take mine in the morning.  You need to decided which you want to try first and if for some reason that isn't doing it for you then switch to the  other time.  We are all different.  Ask all the questions you like.  Remember, there is no such thing as a stupid question.  Everyone in this group is here to offer you support and to answer those questions.

  • Cuetang
    Cuetang Member Posts: 173
    edited May 2013

    Thanks Jo!

  • gmafoley
    gmafoley Member Posts: 5,978
    edited May 2013

    I take mine now in the morning /(day5) seems to make me a little jumpy.

  • Lacey12
    Lacey12 Member Posts: 2,895
    edited May 2013

    I had been advised to start taking Tamox at night to avoid any nausea, which I did. Over time however, I decided to switch to taking it with my morning meds and vitamins. No nausea (I suspect my body was used to the chemical), and fewer warm flushes during the night with this plan. I think you can just try either time and see what works best for you. Good luck!

  • ldesim
    ldesim Member Posts: 1,193
    edited May 2013

    Hi All!

    Just took my first pill 2 1/2 hours ago after putting it off for a few days and staring at the bottle in my bathroom :)  So far so good I feel ok.. not sure what the timeframe is for SE's to rear their ugly head, but I am trying not to dwell on it either.  Hoping if I get any.. it will be the weight loss! 

    Have a great day :)

  • Cuetang
    Cuetang Member Posts: 173
    edited May 2013

    Ldesim-- I did the same thing you did this morning! :).

  • gmafoley
    gmafoley Member Posts: 5,978
    edited May 2013

    Ok Ladies need your help - I have an ONC (who prescribed the tamox) and a sleep doc that has been helping me with sleep.. I'm having a bit of sleep issue since the tamox  not getting to sleep and waking up multilple times a night worse than my apnea has been causing.   Whom Should I call? the sleep doc or the onc??

  • jo1955
    jo1955 Member Posts: 7,545
    edited May 2013

    When I first started Tamox, I had bad nausea issues.  Tried splitting it and that got to be such a hassle.  Decided to take it in the morning with my breakfast and a small glass of skim milk.  The milk took care of the nausea and 2 1/2 years later, it doesn't matter if I have milk or not or what time of day I take it.

    GMA - I would call the sleep doctor first.  If he/she isn't much help, then call your MO.

  • gmafoley
    gmafoley Member Posts: 5,978
    edited May 2013

    Thanks Jo - I just did what you said to do.  Waiting for a call back.

  • ldesim
    ldesim Member Posts: 1,193
    edited May 2013

    I took it this morning with a protein shake.. no nausea and my appetite seems fine.  If I was to pinpoint anything it would be a little fuzzyness in my head and a slightly strange taste in my mouth.. other than that I feel fine.  Hopefully this continues!  

    Cuetang, how are you feeling??

    Aww GMA, I hope you get that resolved.. sleep deprivation must be horrible :(

  • gmafoley
    gmafoley Member Posts: 5,978
    edited May 2013

    Sleep Doc referred me back to my MO who ordered the Rx. The Sleep Doc feels its the tamoxifen. Called the MO - now waiting for the decision to give me something for sleeping or taking me off the Tamox Frown.. I want to stay on this - I am only on a half a pill a day - this shouldn't happen - but of course, I have to be the unique one.. Just want to do something normal for a change...

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