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Bottle o Tamoxifen

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Comments

  • jo1955
    jo1955 Member Posts: 7,545
    edited February 2011

    i haven't had a solid 7 - 8 hours of sleep in years so can't blame BC or Tamox.  I go to bed exhausted and as soon as my head hits the pillow, I am wide awake.  Can't turn the brain off.  Start thinking about tomorrow and what needs to get done at work.  Could take up to 2 hours to fall asleep then I am up several times a night with hot flashes - now warm waves and to pee.  Can't seem to get the waves and bladder on the same schedule.  

    Pennythoughts - Haven't tried any sleeping pills.  The OTC sleep aids don't put me to sleep any quicker and I am still up so they are a waste of money.  Sometimes the best sleep I get is about 1 - 11/2 hours before I have to get up.  Then I don't want to get out of bed.

  • whitedove
    whitedove Member Posts: 121
    edited February 2011

    Hi All:

    Wow, this thread moves so fast. I have been catching up on all the posts and don't have enough space to thank everyone for all the great tips and encouragement.  Due to severe mood swings and irritiability, my onc suggested I take a week long "break" from the T. and start up with 1/2 doses of the 10mg pill, working back up slowly.  I'm back on the full 20 mg. dose.  That, combined with massive exercise (cardio at least 30 min and up to 60 min. 3x week + weights) seems to have helped with the hot flashes and mostly the irritiability.  Thanks to this thread I also am starting the Glycine for sleep.  The exercise probably is doing a lot to release stress and also balance the vaso-vagal response of the T. thus reducing the SEs.  The good side effect of all this exercise is also that I have more energy and feel less "creaky".

  • Sandeeonherown
    Sandeeonherown Member Posts: 1,781
    edited February 2011

    Someone on the sleep thread suggestion a cd on hypnosis

  • tinkertude
    tinkertude Member Posts: 1,998
    edited February 2011

    YES YES YES !!! TO the driinking more water. I am not a water drinker had kidney stomes twice and still didnt drink water now i seem to always have a glass nearby, using a straw for some reason seems to help it go down better strange I know but it works... I am dry all the time...

    Today was a real "off" day, very irritabe and dead tired and felt kinda woozy... and tummy issues hoping tomorrow is better.. some blurrish vision too!!!

    Tomorrow is a new day!

    night ladies catch you in the breakfast car :)

    so glad you are all here to share with thank you!

  • jo1955
    jo1955 Member Posts: 7,545
    edited February 2011
                          
  • dawney
    dawney Member Posts: 136
    edited February 2011

    Feel better Tink!

  • jo1955
    jo1955 Member Posts: 7,545
    edited February 2011

    Tink - Hope tomorrow is a better day.

     

  • Raenay
    Raenay Member Posts: 1
    edited February 2011

    I'd like to join you ladies on this board. I started tamoxifen 20mg Jan 26, 2011. Having regular memory issues although just temporary, insomnia, dry All the time - seems like I can't drink enough water which keeps me in the bathroom constantly and exhausted the last four days. It almost feels like I have a bad cold but am at the end of a z pack pcp gave me. I had surgery mid dec and will not start radiation until this Thursday (3 days). No chemo after having Oncotype test.

  • Chevyboy
    Chevyboy Member Posts: 10,258
    edited February 2011

    Welcome Raenay!   Don't worry, you will have memory issures, and a few other notable things while on Tamoxifen...Wink But they usually even out after a couple months....just read back on this thread, & you'll see what the other gals are doing for their SE's! 

    YES!!!  Remember "Roseanne, Rosanna-Danna?"   And Chevy Chase & what's her name doing the news segment?   I'll bet they are on YouTube....I'll have to look them up...

    TINK!!!  Feel better, little one.... and June...Did you get the other pictures I sent you?  I'm just an old softie for puppies & kittens & oh well, EVERYthing.  xoxooxxo

  • Chevyboy
    Chevyboy Member Posts: 10,258
    edited February 2011

    Oh I forgot!

  • sunangel27
    sunangel27 Member Posts: 234
    edited February 2011

    Haven't been on here for a bit.  I started on the tammy on Jan' 11th.  By the end of the month I thought I was going crazy!!!  The depression was so bad...and the fatigue. Seemed these were the only side effects bothering me...but dam they were enough!!  
    There was such a "mix-up" with things with my drs'.... Rad oncologist said I needed to have rads....had two....surgeon called said no rads,, stop taking them. (said they mis-coded me at the rad office????.........Sent me to another dr. for second opinion. He said no rads, but stay on tammy. Ok....so on the first day of rads, before the treatment, they did an MRI........found another spot. So dr. said I have to have an MRI biopsy done.  :(

    Can't have it done until the end of Feb. or first of March becuase of the rads! :(      

    Oncologist I went to last week took me off the tammy because he said he wants me to be clear of anything before the MRI biopsy, doesn't want anything to interfere with it...... ok....

    Just guess I am still confused and a little nervous. Had been on anxiety meds for this whole time too from surgeon's office.  They seem to help a little...and the depression has supsided some, but thinking it was more to the tammy from what I have read. Now, I'm not looking forward to the day I go back on tammy!! :(         The depression was horrible!! I would be at work, and cry at the drop of a hat.......or no hat!!!   Thank goodness I work with people that understand what I am going thru.

    Hugs to all of you 

    Paula

  • tinkertude
    tinkertude Member Posts: 1,998
    edited February 2011

    RAENAY//Welcome to this thread. You will find wonderful support here. Chevy is right se do subside sometimes new ones pop up but then they go away. I have been on since Sept and  started with insomnia but now its fatigue some memory loss and some others but I cant remember lol.. see you dont lose your sense of humor though! Wink 

    PAULA. So sorry you are going through all that my goodness, like the diagnosis isnt enough. Hang tough and please keep us posted on your biopsy...

    CHEVYBOY, Hoping today is going to be a better day, just staring out so gonna stay positive.... love the FAT CAT PIC... TOO FUNNY........How bout CHI CHAT WITH THE CHURCH LADY... anyone remember that skit lol too funny..

    JO...The water looks very refreshing!!!! thanks :)

    Here us looking forward to a better day ladies, hope all your days are good as well :)

    Maria

  • jo1955
    jo1955 Member Posts: 7,545
    edited February 2011

    raenay - Welcome to the group.  Hang with us - there is so much good information and support here.

    sunangel - Can't believe this is happening to you.  Sounds like the right hand does not know what the left is doing.  Hope someone can get it all straightened out and you know what is next for you.

    Sending (((HUGS))) 

  • Sherryc
    Sherryc Member Posts: 4,503
    edited February 2011

    Will take my tammi tonight.  After reading all about being thirsty wonder if that will happen to me as well.  The last couple of weeks of rads I as like that, I could not get enough water to drink.  I am two weeks post rads today and I have just gotten back to normal with my water intake and not being thirsty all the time.  guess we will see............

  • Smile_On
    Smile_On Member Posts: 66
    edited February 2011

    One week on Tamox. down.  All of the side effects you guys experience are a little intimidating, but so far for me only upset stomach.  It is much more tolerable than chemo--more like indegestion, but with some acid reflux (Caution TMI:  about a Tbsp. of digested food comes back up occasionally which gets pretty disgusting).  Hopefully I continue not having too many side effects, but I know many are probably cumulative. 

    Love the pictures you all post here!

  • tinkertude
    tinkertude Member Posts: 1,998
    edited February 2011

    SMILEON... So glad to hear all is going well with Tam and se are minimal! thats awesome, its so different for each of us, but we will all get through it :)

  • SusansGarden
    SusansGarden Member Posts: 754
    edited February 2011

    Jumped on the Tammy train with both feet on Saturday.  Taking 20mg in the morning ~ today is day three.  Haven't noticed any obvious side effects.  I have been on a few supplements recommended by my naturopath oncologist since diagnosis in October.  So I have been taking melatonin and glycine powder amongst other things so maybe that will help me?  I also am taking 75mg of Effexor as I've had past issues with anxiety/depression and didn't want to chance it with the Tamoxifen. 

    I also had the blood test to see how/if I metabolize Tam ~ and the result was that I was an extensive metabolizer.  My medical onc didn't recommend the test because he said it wouldn't change the treatment... i.e. whether I metabolized it or not ~ studies show there is still a benefit.  But I asked my naturopath onc if he would test for me and he did.  I just wanted to know either way.  Though my husband is relieved it turned out the way it did.. because if I had come back a poor metabilizer, he thinks I would have psyched myself into worrying about it not working or imagining se's or something.  Unfortunately, he's probably right!  Though recents tests have shown there is no higher risk of reoccurence whether you are a good metablizer or not.

    So my plan is to keep up with the supplements, really watch the sugars/starches, and try to fit in enough exercise.... and keep my fingers crossed!!!!

    I appreciate all of you ladies sharing your stories, thoughts, fears, hopes. It is comforting to know you aren't on the train alone. 

  • Barbie7
    Barbie7 Member Posts: 126
    edited February 2011

    Welcome new riders Raenay, Sunangel, SherryC and SusansGarden!  I'm sorry if I've missed anyone.  Don't let the SE's of other people scare you.  The drug is a powerful medication, this is true, but everyone tolerates it differently.  Here's hoping that your all tolerate it well!

    Last night was the third night in a row with what I call my painful nightsweats.  They "hurt", in a weird way.  It is like having chapped skin, and being covered in my sweat doesn't help.  UGH, this is just a bad month!  I plan to take the afternoon off and try to get some sleep.

  • jo1955
    jo1955 Member Posts: 7,545
    edited February 2011

    Barbie - Hope you can get some sleep - we all need lots of that and the nightsweats get better.

    (((HUGS))) 

  • JustmeAlicia
    JustmeAlicia Member Posts: 629
    edited February 2011

    HI I have some to catch up on after a few days away.

    Jo ~ sorry to hear of the lung damage.  I have heard other girls with the same and they are ok.  It burnt the scillia in their lung or something and leaves you suseptible to infections.  ugh !  Hang tough sista !

    Jo and Chevy love the pics.  That breakfast looks divine !  YUMMO ~

    AND yes I am having a hard time keeping up with this thread.  BUT that means the tamoxifen is keep us all here, LIVING LIFE !  woo HOO

    :)

  • JustmeAlicia
    JustmeAlicia Member Posts: 629
    edited February 2011

    now we need a (bump)

  • SusansGarden
    SusansGarden Member Posts: 754
    edited February 2011

    Thanks for the welcome, Barbie! :) .... and I like what you said , Alicia, about tamoxifen is helping to keep us here ~ so that is why the thread is active, thus making it hard to keep up!  

    So... did you guys find yourself questioning every little ache, twinge, stomach gurgle, etc... wondering if it's the tamoxifen?   

  • MarieK
    MarieK Member Posts: 467
    edited February 2011

    HI All!

    I'm back on Tamoxifen after a 2 week break for exchange surgery.  The only noticeable difference for me was the leg cramps - I didn't have any during the break!

    This is my second break and although I had a tough time when I first started Tamoxifen with headaches, hot flashes, leg cramps and worry over DVT going back on after the first break was very easy with no "onslaught" of side effects or symptoms.

    I'm hoping that this time will be the same.

    I agree with the water drinking and I will add - including more fibre in your diet.  These 2 things alone have made a big difference for me.

  • Harley44
    Harley44 Member Posts: 2,126
    edited February 2011

    Barbie,

    so glad you are back, on bc.org.  

    Yes, I had a bone density test last month which showed 'significant bone loss' from Femara.  I knew that would happen, and I asked my onc. to give me something to help with bone loss... either a bisphosphonate, or even Zometa.  Nope, he would not do ANYTHING...  so I just waited....  

    and now, I'm BAAACK!  

    This is year #4...  I can't wait to be finished with these hormonals!

    Thanks for thinking of me, and those nasty uterine polyps.

    Take care.

    Harley

  • redninrah
    redninrah Member Posts: 366
    edited February 2011

    Hi all- i just got my RX for Tamoxifen......so im going to wait until my burns from radiation to heal before i start on these. Is there any side effects that is very common and that I will definately get?

    SO far im still achy from the chemo and i have lots and lots of hot flashes. 

  • jo1955
    jo1955 Member Posts: 7,545
    edited February 2011

    redninrah - The biggest SE I am having right now is feeling dehydrated all the time.  Seems I am drinking more water than usual.  Also have some pain in my toe joints but are doeable.  Hot flashes are almost nonexistent.  So overall, Tammy and I are getting along.

  • tinkertude
    tinkertude Member Posts: 1,998
    edited February 2011

    SUSAN..yes I still question every and any change in my body, not sure if I do that because of the Tamoxifen though or the bc.. maybe a combo of both!!

    BARBIE..Hope tonight is a better nights sleep for you. There are nights i get them and I feel like its one big long sweat.. everytime I wake up I am sweating.

    The worst se for me right now is the fogginess, wish that would subside , like I am in a daze..

    Welcome back MARIEK..Hope all went well with your surgery. I noticed I did better when I went off for 10 days before one of my revision surgeries in Nov  and then started back up, although I started slowly and spilt the dose maybe thats why??? who knows.... what a ride!

    WELCOME TO ALL NEW TAMMY LADIES!!!

    HUGS TO YOU ALL!!!! Smile

  • Sandeeonherown
    Sandeeonherown Member Posts: 1,781
    edited February 2011

    Welcome new tamoxifen-gals!!! Remember, you may have no side affects at all..but if you do, someone here has already experienced it and will offer up their wisdom. I am taking glycine with a sleeping aid my gp gave me and it helps. Melatonin gave me weird dreams. I had fuzzy vision for a bit (month 2?) but it could have also been me adjusting to new lenses...seemed to only last a few days...sleep is my biggest issue...amoxifen just added to it so I am taking my dose half in the am and half in the pm..also helped with hot flashes.

    To echo Jo1955...Tamoxifen is why we are here...and it is helping to keep us here on this earth a whole lot longer than we might otherwise be so...hang in there with the SEs and bring kleenex to work with you...think of your tears as watering mother earth...better out than in, i say!

  • Sherryc
    Sherryc Member Posts: 4,503
    edited February 2011

    Will jump on the tammi train tonight.

  • jo1955
    jo1955 Member Posts: 7,545
    edited February 2011

    Sherry - CHOO CHOO - ALL ABOARD!  I have your seat saved next to me.

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