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Bottle o Tamoxifen

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Comments

  • VirginiaNJ
    VirginiaNJ Member Posts: 314
    edited January 2009

    Ok Joan, this is a little scary...we both live in the tri-state area...we both work in the food industry...you went/I am GOING on the Explorer of the seas...we both have roly poly Mii's for the Wii fit!!!  Separated at birth!!??????  I leave on the Explorer on 3/27.  Booked this cruise more than one year ago.  CAN'T wait...  How was the trip??  Will you be posting a review on CC?  I've very active on that board.  Have done NCL out of NYC and LOVE it as well...  (Guess we should be having these discussions over at the CC board!!)

    karol- PM if you want to be "friends" in FB.  I was SHOCKED that my sister's 16 and 19 year olds agreed to be my friend!  They are good kids and I try not to look at their FB pages too much...and my sister hasn't asked me too.....

    Ok, frigid cold here in NJ and people DO NOT know how to drive in the snow.  ARGH.  Sigh...at least I am here at work!

    Love to all,

    Virginia 

  • yawyaw
    yawyaw Member Posts: 11
    edited January 2009

    Hi everyone, I just started on Tamox a couple days ago. I stared at the bottle for a long time, then took out a pill......it just sat there on the counter looking at me for the longest time....finally, I did it! I decided I had to do it. Now I am waiting for the side effects to kick in, hopefully they won't be too bad. Is it best to take the pill in the a.m. or p.m.

    Thanks, Yaw

  • ashaby
    ashaby Member Posts: 200
    edited January 2009

    Dear Yaw, 

    Either an a.m. or p.m. Side effects take awhile to start, months, often. Some people get almost none, and others gets lots. Mine have been quite mild, joint aches, a little insomnia.Think about how the Tamox is nuking the cancer cells!

    Basha 

  • yawyaw
    yawyaw Member Posts: 11
    edited January 2009

    Thanks Basha, I am hoping for a breezy five years.

    I have a couple other questions, does tamox start menopause early? After Tamox, are we ever able to take any sort of hormones? Are we trying to block hormones forever, or just a few years?  After menopause doesn't the body still produce some hormones?  

    Sorry for all the dumb questions, but I can't quite get this clear in my head.

    Thanks, Yaw

  • karol61
    karol61 Member Posts: 36
    edited January 2009

    Yaw,

    Glad you are a BC survivor! 

    No questions are dumb it's all so mind boggling. 

    From this website treatment info:

    "Tamoxifen has very weak estrogen activity. When you take tamoxifen, it passes into your bloodstream, joining all kinds of hormones, nutrients, oxygen, and other molecules as it circulates through the tissues of your body. If breast cancer cells are present, tamoxifen flows around them as well. If these cancer cells have estrogen receptors (about two-thirds do), tamoxifen slips into the receptor "locks," filling up a space that would normally be taken by the body's natural estrogen. "

    Tamox works while you take it. Some women have menopausal symptoms,some do not. Yes, after menopause your body  makes other hormones.

    Karol 

  • Makratz
    Makratz Member Posts: 1,605
    edited January 2009

    Hi YawYaw,

    No dumb questions here!  I am 42 and premeno.  I have been on Tamox since the end of Oct 08.  Tamox has not put me into menopause, but my periods are not regular anymore.  I seem to be about 2 weeks late every cycle.  Also, my periods are a lot lighter than they used to be, which is very nice! I also have hot flashes and night sweats.  I always had night sweats about 3 days before my period, now they are every night.   Everyone is different so you'll have to see what happens to you.  Best of luck and keep asking those questions.

  • yawyaw
    yawyaw Member Posts: 11
    edited January 2009

    Thanks for all the great info, it really helps to understand whats going on with your body.

    Is anyone having headaches on Tamox?

  • Harley44
    Harley44 Member Posts: 2,126
    edited January 2009

    yawyaw,

    Welcome to the Tamoxi train!

    I didn't get headaches from Tamoxifen, but I did get terrible headaches when I went into menopause very early, due to a condition called Premature Ovarian Failure...  IMHO, having LOW levels of estrogen may give some women these horrible 'hormone' migraine headaches.  They are a sub classification of Migraines, I have read, and it is brought on by low levels of estrogen. 

    I hope you are feeling better soon.  When I get these kinds of headaches, sometimes they are brought on by changes in the weather.  My dr. prescribed migraine medication, and when I get these headaches, I take one of these pills, and rest.  They usually go away in a couple of hours.

    Good Luck!
    Harley

  • PatMom
    PatMom Member Posts: 322
    edited January 2009

    yawyaw,

    I haven't gotten any more frequent headaches, but since I started the Tamoxifen, there are no more minor dull aches, every headache is a sharply painful one.  Luckily mine usually resolve pretty quickly.   

  • karol61
    karol61 Member Posts: 36
    edited January 2009

    Harley and Yaw,

    One of the Tamox side effects that I don't have is headaches. 

    I used to have horrible hormone migraines but they lessened after I had a complete hysterectomy,and then after my ovaries were removed I hardly ever have a migraine. I do get migraine auras +take meds if that happens.

    My skin is way more sensitive on Tamox, it gets dry +itchy easily. Probably because Tamox blocks even the tiny bit of hormones my body makes.

    Karol 

  • prayrv
    prayrv Member Posts: 362
    edited January 2009

    Karol,

    I am the same - I hardly have any headaches (migranes) anymore.  I used to get them all the time when I was on the pill.  Now that I'm off the only headaches I get are the ones about 3 hours before my period starts!!  What a warning signal! 

    Gentle hugs to all!

    Trish

  • yawyaw
    yawyaw Member Posts: 11
    edited January 2009

    What about depression, is that a side effect for anyone? That really worries me. I feel like there is a black cloud over me....maybe because we have had an inversion here and haven't seen the sun in days :) I can deal with anything if I feel good mentally.

    Thanks, Yaw

  • jules4evr39
    jules4evr39 Member Posts: 121
    edited January 2009

    OMG!!!!! Karol, I was an RN...But you must own a PHD better than my Oc!!!!!!! I have been here searching like mad to find enough info so I would not be scared to take Tamox!!! I was sure it was going to thro me right into menopause that I have held onto my script since 11/17/08. You may just be a life saver....seriously, for me!!!!! I will now get my script filled in the morning..and stay posted here. I started a thread earlier today...??Tamoxifon???. Until I posted the thread I seriously was unable to find enough info to encourage me to take it!!!!!! Thank you so much! May God bless you ALWAYS!!! Julie

  • jules4evr39
    jules4evr39 Member Posts: 121
    edited January 2009

    Yawyaw, thanks to this thread..I am also about to take my first pill, Wed. 1/21/08..OMG!!! Now insteadof being scared!!!!! I am excited about the potential benefits!!!!

    You Ladies have no idea how much this site and this thread has helped me to deal with this issue. After 2 agonizing months of being scared and ill-informed, YOU have saved me!!!!! Thank you so much!!!!!!!!!!!!!!!!!! If you get a chance, please read my profile to see if you may have went through something simular to me. I really feel like my whole plan of care is so different than anyone elses. I just feel odd???  Thank you.....Julie

  • yawyaw
    yawyaw Member Posts: 11
    edited January 2009

    Julie, I am glad your here. I, like you, thought I was in for a quick menopause, but I am learning more each day (thanks to all these knowledgeable women!), and understanding what Tamox will do to/for me. Did you chose mastectomy so you wouldn't have to do radiation or chemo? I also held on to my prescription for months before I chose to jump in. I hope you learn lots here and feel better about your choices. We are about the same age, my birthday is in Sept. also. I chose lumpectomy and radiation.

    Yaw

  • Joyce-PA
    Joyce-PA Member Posts: 53
    edited January 2009

    I have a question.  Just finished 1 year of tamoxifen without too many side effects.  Saw my BS last week and she said I will be on it for another 4 years.  I am going to be 57 in June and through menopause (1 year without menses).  My tumor was estrogen/progesterone positive (98% & 96%).  I thought that post-menopausal women switch to AI rather than stay on tamoxifen once through menopause.  Does anyone know?

  • prayrv
    prayrv Member Posts: 362
    edited January 2009

    Joyce,

    Your onc (not BS) should probably be the one to test (there is a blood test) to see if you're in menopause and make the decision with you if you are to stay on tamox or not.  JMHO

    Gentle Hugs,

    Trish 

  • Joyce-PA
    Joyce-PA Member Posts: 53
    edited January 2009

    Trish,

    I didn't have an onc, just BS and radiologist oncologist.  The BS is a breast cancer specialist.  Now that radiation is over, my BS schedules my mri's, mammos, etc. I see her every 6 months.  I suppose it's because I had DCIS and didn't need chemo that I didn't have an ocologist.   I just had a estrogen blood test done and my estradiol was 19.   It seems that some people stay on tam for 5 years, menopausal or not, and then switch to AI's.  Very confusing to me.

  • prayrv
    prayrv Member Posts: 362
    edited January 2009

    Joyce,

    I'm guessing here, but maybe he/she wants you to stay on Tamox due to less se's that you've had and why mess with a good thing!?! LOL  I do know that with tamox, our bones are better than when on AI's (that's what I've heard) and that might be another reason.  I've seen some women here on the boards that are post meno and still on tamox.  I would just call your bs's nurse and ask for the doc's reasoning.  You'll get your peace of mind and understanding.  As this journey isn't confusing enough as it is right?

    Gentle hugs,

    Trish

  • revkat
    revkat Member Posts: 122
    edited January 2009

    I think (but could be wrong) that with DCIS tamoxifen has been shown to prevent recurrances, but the AIs haven't been fully tested yet for that. Someone correct me if I'm wrong, but that is probably why your dr. is keeping you on tamoxifen.

  • Valeriex
    Valeriex Member Posts: 4
    edited January 2009

    I am on my last 6 tamoxifen pills!!!!  I have done 5 years and will be 6 years from diagnosis in May.  I am (was) stage II a or b.  2 nodes pos. I really want to take a break from any meds.  Luckily I have no other health issues.  I turned 50 last year.  I want to see if it is menopause or tamoxifen that has been causing my lack of concentration, sadness, etc.  My onc will see me again in June and then we will decide about more meds.  She said that over 50% of all recurrences occur after the 5 year mark.  I think that I have reduced my chances of recurrence to 15% already.  Just don't know....... 

    Any thoughts on this?  Who has felt better after stopping tamoxifen?  Who didn't notice any difference?  Who went on to more meds, ie Arimidex?

  • Barbie7
    Barbie7 Member Posts: 126
    edited January 2009

    Valeriex!!  Congratulations on your last 6 pills!!!!  I'm sorry I cannot help with your questions but I wanted to post and offer my congrats!!

    Barbie

  • jules4evr39
    jules4evr39 Member Posts: 121
    edited January 2009

    yaw yaw, just got back on here, a bit depressed these days. Yes, I did choose a mastectomy over rads or chemo. I walked away like nothing ever happened, pretty surreal. But now, I surely know it happened to me.   I had put the script away with no intention of taking it. Till now, it's all hitting me hard and I feel I have to do more to hope I will remain ok. Still have not gotten it filled though. Tough times in my marriage right now too.......julie

  • Makratz
    Makratz Member Posts: 1,605
    edited January 2009

    Valeriex, Congrats!  I can't help you either as I have only been on the Tamoxtrain for a few months.  It is good to hear that you survived the tamox, it gives me hope.  Good luck with the next part of your journey.

  • fairy49
    fairy49 Member Posts: 536
    edited January 2009

    jules, looks like I did the same as you so far, I was very upbeat until recently now I am all over the place emotionally, very confusing time, scared to take the stuff, scared not to (have the prescription sitting in my bag.......) "all" I have done so far is the bi-lat mas. all of this is really hard on any marriage, there is so much to consider, all of sudden you are not the same anymore no matter what, but it will get better, I know it! I am sending prayers and hugs your way.

    Lorraine ox

  • jules4evr39
    jules4evr39 Member Posts: 121
    edited January 2009

    Thanks Lorraine, I will also pray for you.

    I am in a very  new marriage......My previous marriage was 18yrs. long. Gil was killed while on hisd motorcycle in Oct. 2005.

    My life is so different now. My last of 3 children is now 18 and she wants to move out on her own. I feel like I have nothing left here. Iwas diagnosed only 6 months after my marriage last year. I think he took inside of him much deeper than I did at the time. Like I said, it all happened within 2 months and it was all over. Now it's hitting me like a ton of bricks!! I keep a bra on 24/7, but when I shower, it sucks bad!! That's when I have to turn away and try to forget it. Iwill no longer take my much loved long baths. I need to kick myself in the butt, pick myself up and move on...just can't get there. I know that one of my biggest problems is that I sit in my house ALL the time alone, til my husband gets home. Then I have just dwelled on it all day. I worked so hard for a long time and stayed so busy that I lost my friends along the way. This is the 1st time I have had a chance to share these feelings....sorry so long....jules

  • fairy49
    fairy49 Member Posts: 536
    edited January 2009

    Jules! oh my goodness you have been through the wringer my heart goes out to you! I can't imagine losing your husband like that. I have a 21 year old, he is moving too, its so sad! but I do realize that he has to live his own life too, he is an actor and just filmed a show for ABC Family so I know he needs to be in LA where his work is and its only 45 mins away but still, it will be different.......I have just realized that life after BC is never going to be the same, but as the girls discuss on other threads there will be a different normal for us, so we just have to find our way. You have to embrace your new body, I decided even before I have my exchange surgery that I was going to enjoy having perky boobs LOL!! I have never had them EVER! the way I had to look at it is, my old boobs were no good for me anymore, so I said goodbye to them, we had good times together they fed my child they did a great job, but they turned bad, so I had to give them up, once I got my head around that I was ok with it. I wanted to keep my marriage the same or at the very least as normal as I possibly could considering everything (my hubby is 15 years younger so I have a bit of pressure here!! I just talk to him a lot about stuff, even if I know he might not want to hear it, he is a tough guy,not super emotional so I know he keeps things inside so I just talk and we have stayed close, don't get me wrong we have had some huge blow ups but I will be damned if this horrid disease ruins my marriage too! Are you able to join a support group in your area? I know that would help and that way you could get back into going out and make some new friends. there are some amazing women on these boards that have answers and advise on everything you can imagine so do stay on here and read, it helps. You look so beautiful in your photo, I want you to feel better so you can enjoy your life and marriage again! Please keep in touch and let me know how you are doing and feel free to PM me whenever you want!
    Love

    Lorraine ox

  • yawyaw
    yawyaw Member Posts: 11
    edited January 2009

    Congratulations Valeriex, I can't wait until the day I say "only one week left!!" Hope your feeling well.

     Jules, I am so sorry you are having to go through this. I do know that I CANNOT stay home alone when I have any sort of crisis.  It's BAD for me! What about some sort of counseling for both of you? He is probably just as lost as you are and doesn't know what will make you feel better. If you add up all you have been through recently, then having your last child ready to leave home......I am hyperventilating just thinking of it, you have a lot to deal with.   I have had a crappy last couple years myself...lawsuit, my son getting arrested, cancer...son arrested AGAIN....my last child turned 16.  I have decided to start volunteering at Love, Inc. to keep my mind on others.  I know God has a plan for our suffering, but sometimes I just want to tell him-enough is enough!! I will pray for you!

    YawYaw

  • fairy49
    fairy49 Member Posts: 536
    edited January 2009

    Yaw Yaw, such a wonderful thing to volunteer "relieves us of the bondage of self" we always feel better when we are doing for others!

    L

    ox

  • yawyaw
    yawyaw Member Posts: 11
    edited January 2009

    Thanks Lorraine.  When and what show will your son be on?? We will watch for him. Have you gotten your oncotype dx test results yet? I am very thankful for that test. My score was low enough that I did not have to do chemo.  Just radiation and tamox.  I really like your God saying, so true!

    Yaw

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