About-to-Start-Hormones Group

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  • Mary22
    Mary22 Posts: 779
    edited April 2009

    I have been taking tamoxifen for about 25 days now. When I first started I had mood swings and crying jags, and night sweats. My onc prescribed a low dose anti depressant Effexor XR 37.5mg and everything is much better now. I do still get overwhlemed everything,but I just try to go with the flow. I should consider myself lucky since I did not have to have chemo and only had a lumpectomy. My cancer was caught on my very first mammogram and did not spread to my lymph nodes. Good luck ladies!!!!!

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  • KAK
    KAK Posts: 1,679
    edited April 2009
    When research study authors use the word "significant," that can mean something like a 5% difference between the effectiveness of one drug versus the effectiveness of another, e.g. Drug A could be 78% effective and Drug B could be 73% effective.  Not much of a difference really.  I'm with Spring's doc.  I don't really like the concept of aromatase inhibitors.  I don't like the idea of shutting off ALL the estrogen in the body and keeping it from everything.  I prefer to let some estrogen float around.  At least on tamox, it can still go to my bones & keep my cholesterol down.
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  • marlenet
    marlenet Posts: 345
    edited April 2009

    NancyD~and all

    Thank you for addressing the issue that not all have nasty s/e.... I started Tamoxifen a week ago and have been reading from this board, getting worried.  I know i may have s/e but knowing  not everyone had nasty s/e will help the mind.  My heart goes out to all who has or had nasty s/e.  I have a few friends that have been on Tamoxifen with very Little s/e. I also read chemo was worse then Tamoxifen, and i had chemo.  My onco thinks i will weather it well as i did with the chemo.  My main concern was blood clots. I did a lot of research and that is very rare and giving my age etc ( 45) highly doubtful.  Thank you all for sharing you experiences, good . and bad.   Thank You   Thank you   Thank You  Smile

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  • susiered
    susiered Posts: 256
    edited April 2009

    Hello ladies,

    I started Tamoxifen 2 weeks ago. I have had a few "warm" flashes, but nothing too bad. One thing I am noticing is that I feel like I am having menstrual cramps. I feel like I am about to start my period. They are not just minor, but pretty bad. Anyone having, had, or ever heard of this? Is it the Tamoxifen?

    Thanks for your help,

    Susan 

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  • Anonymous
    Anonymous Posts: 1,376
    edited April 2009

    marlenet--I just finished my 5 years of tamox and it really wasn't so bad. Mainly hot flashes which I would've had anyway,  eventually from menopause. A baby aspirin (81 mg) can be used to help prevent blood clots if OK with your physican. (I didn't take it and was fine, but now doc recommends it with the evista I'm taking). (maybe cuz now I'm 5 years older!!! 51)

    Anne

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  • unique
    unique Posts: 554
    edited April 2009

    Spring, I sure will. My onc is out this week so will get my appt. next week to discuss it.

    Now for a new question: how are you all paying for the AIs? It runs about $400 a month before insurance, mine will pick up half after my $250 deductible. Are you getting samples? Any other strategems?

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  • unique
    unique Posts: 554
    edited April 2009

    I mean the Femara, Aromasin or Arimidex. The Tamoxifen is relatively inexpensive.

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  • NancyD
    NancyD Posts: 3,562
    edited April 2009

    unigue, my onc gave me about a month's worth of samples as I was sending my prescription in to a mail order fulfillment place and didn't know how long it would take. Turned out, they got the Arimidex to me in less than two weeks. And the plus was they didn't send it in the blister/bubble pack that everyone was having such difficulty with last summer. I got enough for three months loose in a little white bottle.

    I have prescription coverage, thank goodness, and the three month's worth only runs me $50. But considering what it does, the lives it saves, it woud be worth any price.

    Funny, I get bombarded by spam for Viagra and other meds, but they never mention Arimidex or any breast cancer meds in them.

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  • marlenet
    marlenet Posts: 345
    edited April 2009
    AWB-Thank you Wink  
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  • Makratz
    Makratz Posts: 12,678
    edited April 2009

    NancyD - You look fantastic!!  I love the new avatar!

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  • NancyD
    NancyD Posts: 3,562
    edited April 2009

    Thanks, Linda. I figured it was about time for a new one. The hair is back!

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  • Makratz
    Makratz Posts: 12,678
    edited April 2009

    And it looks great!!  You must love it!!

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  • paweed
    paweed Posts: 41
    edited April 2009

    Hi all.  has anyone "failed" tamoxifen and now is on femara??  I had real issues on the tamox and my onc has now switched me.  I 'm curious if there is anyone who either failed tamox and femara or failed tamox and was okay with femara.  He's giving me about a 50/50 chance of success(or failure!)

    any info will be great.  thanks   BTW,  Hi Linda!!!

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  • mzmiller99
    mzmiller99 Posts: 894
    edited April 2009

    NancyD- I agree!!  Super hair!!

    Susan

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  • Makratz
    Makratz Posts: 12,678
    edited April 2009

    Pweed - glad to hear you went to your Onc and he switched you.    Think positive!!  Hopefully this will be the drug of choice for you!  I looked for you tonight at the 6:00 but didn't see you. We'll have to get together soon.  My laptop power cord died so I've been scarce on these boards.  I should be getting a new one in the mail soon.  I keep attacking the mailman everyday....I am lost without it!

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  • Rachel_BC
    Rachel_BC Posts: 1,386
    edited April 2009

    Ladies, I just wanted to say thank you, thank you, thank you.  I am in the March 09 RADS group- I just backspaced over everything I was about to say, explaining why I am here, how scared I am of hormone therapy (in my case Tamoxifen, maybe Zolodex maybe Zoledronic Acid, yada yada but then- I just read the entire thread here, and you already know :)

    The last page where Nancy and Susan (msmiller) made a point to say that most people only post when they are suffering really made me feel better.  I had assumed every time someone disappeared it was because they were too sick to post.  Doh!  It's the other way 'round. 

    I was wondering while reading everything why the statistics for Tamoxifen tolerance were like 80% good but here was all this bad news...but in the perspective you just gave me turned that around too- if all the women who were about to take Hormone Therapy on these boards and were scared came to this thread and posted every time they were feeling awful then... proportionally  actually its only a few women.:)

    Where's the redheadace?  Hmmm?  Does her not posting for a while mean she's too busy enjoying life to find her way back here?  I sure as hell hope so. :)

     Before I forget- I have a question that hasn't been brought up yet.  Anyone have big ol'fibroids before bc and how did Tamoxifen affect them?  Grow? Shrink? No change?

    Thanks again ladies, oh and what is this "sex" thing that was brought up a while ago?  Oh.... wait, I remember, that was like... the 70s, right? :P

    And- another thing you already know... GREAT SHOES KAK!

    Thanks again ladies,

    Rachel 

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  • NancyD
    NancyD Posts: 3,562
    edited April 2009

    Good question, Rachel. I don't know anything about the effects on fibroids, but maybe if we knew a little more about what feeds the growth of fibroids we could make a guess.

    Anyone know about that? 

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  • Makratz
    Makratz Posts: 12,678
    edited April 2009

    Rachel - Welcome!

    I have been on Tamox for 6 months now and I am doing OK!!  Just thought I would post something positive.  I do get occassional night sweats and hot flashes, but they are manageable.  My biggest problem is that I put on 12 pounds that I CANNOT  get rid of.  But, if that's all I have to worry about, I'd say I'm doing pretty well. A friend told me she knew someone on Tamox who put weight on and then lost it all real quickly when she stopped taking it 5 years later.  So, I joke with my DH that when I am 47, I will stop taking the Tamox and I will have a HOT little body!!   Something to look forward to!

     Tamox isn't that bad for everyone!  Try and think positive.  And yes, KAK's shoes ROCK!!!

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  • marlenet
    marlenet Posts: 345
    edited April 2009

    Hi

    I have been on Tamox for only 1.5 weeks and ( no that it's a long time) i have been  fine.  I have had hot flashes; but then again i have had them since chemo.  I know of other's that have been on tamox and have had no problems. I hope it still holds out this way for me.  My friends that have been on it said it should.  I agree with Makraz~Tamox isn't that bad for everyone!  Try and think positive.  Laughing

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  • KAK
    KAK Posts: 1,679
    edited April 2009

    Hey, girls!  Thanks for the shoe compliments!!   I've uploaded a new avatar, but here are the shoes just because they are so fun.

    It's my B-day today and I'm feeling better after having a major meltdown yesterday about the real possibility that I have more cancer.  I have a diagnostic mamm next Friday.  I did some reading about DCIS and oddly enough, it made me feel better that I'm not crazy or irrational to be concerned about the calcifications on my recent mamm, because DCIS is actually more of an unpredictable, variable bugger than a lot of us are led to believe.   So, bottom line, if it's there, I'll have mastectomy and be done with it.  Sucky to think about on my birthday, but actually, I feel good today.  I can deal with surgery.  I can recover from surgery.  I won't probably need chemo or radiation.  I won't have to worry about this stupid breast anymore.   I feel better.

    Nancy, you look adorable!

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  • pclarky
    pclarky Posts: 37
    edited April 2009

    Oh, KAK, sorry to read you are facing this again. Pulling for you!

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  • Jeanne_D
    Jeanne_D Posts: 175
    edited April 2009

    I am to start on tamoxifen after I finish my radiation treatments, which I have 18 more to go.  I stopped my periods 13 years ago, so, I assume I am post menopausal.  Is there anyone like me?  Done with periods years ago?  Will the tamoxifen bring them back or give me symptons?  I am scared to even go on it.  I wonder if I would be ok without it.  I am so sick of treatments and cancer that I just want to finish my radiation and try to feel good again. 

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  • redheadace1
    redheadace1 Posts: 212
    edited April 2009

    Hey, all. I have been out of the loop for a while. Trying to forget about BC, I guess. Just wanted to address Rachel's question. Before I started the Tamox in Jan I had several fibroids; one was 8 cm. My uterus was like a 3-4 mo pregnancy. In the past few months--in fact in the past couple of weeks, my belly has ballooned to the point where I had to go to the ER last night. They did a CAT scan and my fibroids are taking over in there. Increased to the size of a 5 mo pregnancy, pressing on my kidneys and ureters. I'm so uncomfortable now that I'm probably going to have to have an emergency hysterectomy. Going to see my gyne today to set up surgery. I think it's from the Tamox, but I don't have any real proof. It's scary, though, to watch your belly grow in size from DAY TO DAY! And VERY uncomfortable. I see my onc on Wed so I will let you know what he says.

     Best wishes to everyone.

    Ace 

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  • mzmiller99
    mzmiller99 Posts: 894
    edited April 2009

    Ace - How good to hear from you!!  Glad you were taking a break.  Sorry about the fibroids, tho.  Hope everything comes out OK!!Wink

    I see my bs on Thursday.  I'll talk to her about the same thing.  I've been spotting from a fibroid and I have such a fear of ovarian cancer...I've got my fingers crossed that she'll say to haul it all out of there!

    Hugs,

    Susan

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  • Springtime
    Springtime Posts: 5,355
    edited April 2009

    Hi all,

    Just reporting in. 

    I have been a few weeks now on Tamoxifen. Around 2nd week I started to feel discharge, but then it went away. I was tested and know I am an "extreme metabolizer" of Tamoxifen, so was thinking I would have more symptoms, though I know it's early.

    But then, maybe it will really work without any really bad SE's? A Girl can hope. 

    Spring...

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  • Makratz
    Makratz Posts: 12,678
    edited April 2009

    Ace nice to hear from you and so sorry you have to go through this.  I hope everything goes well for you.

    Susan - love the new avatar.  I hope things go well for you too. 

    Spring - we had a thinderstorm the other night and I thought perhaps it was you!  Glad to hear you are having minimal side effects.

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  • Springtime
    Springtime Posts: 5,355
    edited April 2009

    Makraz, LOL!!!! no exploding yet!

    Ace, call me crazy, but that does not sound good!!! Do report back. THinking of you!!

    Jeanne, I don't know if this helps, but so far, and this is still early for me, popping this little white pill at bed time is the easiest thing I've done through this BC journey!  

    Spring...

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  • mzmiller99
    mzmiller99 Posts: 894
    edited April 2009

    Makraz -  thanks, but I look like a peanut head!  Can't seem figure out how to make it normal-sized.  Oh, well. 

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  • debisongbird
    debisongbird Posts: 275
    edited April 2009

    Dear Jeanne D, I am also post-menopausal and instead of tamoxifen, I am (or will be taking) Aromasin. I suppose it is up to your onc, but most of the women I talk with are taking tamoxifen if they are pre-menopausal or peri-menopausal, but again, it is up to your onc and you. I know, I am not thrilled about taking hormonal meds either, but when I was in radiation I spoke with 3 women there who had cancer before and when they finished they opted to NOT take the hormonal meds and they did get a reoccurance. I can't say whether it's because they didn't take the meds or not, but taking the meds does give you some chance of NON-reoccurance, so for me, that's reason enough to take them. There is also more than one hormonal medicine choice. So, if one doesn't work for you or is too hard, you could always ask to switch to another. Wishing you well in whatever your choice is. Keep us posted. Debs

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  • KAK
    KAK Posts: 1,679
    edited April 2009

    Oh, crap, Ace.  Let us know what your gyn says, about the hyst and about whether tamoxifen has contributed. 

    My belly has expanded a bit lately, too, but I can only blame it on cheesecake and chocolate!!

    Hope you all had a good Easter weekend.   It was cold here, but the sun was out, which is better than the snow flurries we got last week!

    Susan, you do NOT look like a peanut head!!!   Never!

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