Bottle 'o Tamoxifen

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  • EastCoastGrl
    EastCoastGrl Member Posts: 282
    edited December 2010

    I'm going to be starting on this train soon as well. Relieved to be....scared to be. :( Hate this.

    Go in for labs tomorrow. Appt with gyn Jan 13-tried to get in earlier but couldn't- (whom I'm going to ask for hormone tests...even tho my onc said not necessary...I want to know!) I made this appt myself and onc also thinks it's a good idea to do the TVU first as well. Eye appt weds. Onc appt next week.

    So, I suppose I will be starting sometime after the 13th. I'm an "extensive metabolizer" per my 2d6 test. Guess that's a good thing, except I read that the extensive metabolizers are the ones who typically drop out of treatment because they have the most profound side effects. Also, still kinda concerned about one of my blood clotting tests though. Protein C. Was out of range... a little low. All others were fine.  Dr's think it may be thrown off because of the IV trauma I still have in my vein from surgery. ?? who knows.....Hate this...did I say that already? :(

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  • Beanius
    Beanius Member Posts: 1,697
    edited December 2010

    Lindy137 - thanks for the advice and encouragement!

    chevboy - LOL! You make it sound fun, so I won't miss my pass!! Jan 1 I'm hoping aboard!!! (Purple boob and all)

    Alicia - more good news, thanks!!

    jo - love your pics!!

    eastcoastgirl - wishing you all the best (and I hate all this too!!)

    Chugga chugga chooo chooo - Tammy train's coming in fast!!

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  • jo1955
    jo1955 Member Posts: 8,543
    edited December 2010

    ALL ABOARD THE TAMMY TRAIN - BEANIUS IS THE CONDUCTOR!

     

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  • bcincolorado
    bcincolorado Member Posts: 5,758
    edited December 2010

    I tried Effexor after I became very anxious (mostly about driving) to the point it was crazy after I started Tamox.  After 2 days of it I said NO Thank You!  The SE of that were 10x worse than anything I felt on Tamox.  Made the Tamox SE feel like nothing after that!

    Jeanette you are a hoot! 

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  • jo1955
    jo1955 Member Posts: 8,543
    edited December 2010

    bcincolorado - You are the second person that has said the SEs from Effexor are not worth it.  Thanks for passing on the info.  Won't consider taking it.

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  • rgiuff
    rgiuff Member Posts: 1,094
    edited December 2010

    JFV, same here,  I always ask to be off the day after Christmas.  Love that relaxing feeling of basking in the afterglow of the big day!
    Kerrie, I've also had knee pain since I've been on tamoxifen.  Sometimes it's barely noticeable and then I go through my achy periods.  November was an achy month for me, but December so far has been great.  Even going down the stairs, I barely feel a twinge.                                                    Beanius, I use testosterone gel, because between the perimenopause and tamoxifen, I've taken a big hit in that whole libido area.  The type I have is rubbed on the inner arms, not down below.  It helps with the response and sensations, not so much with the desire.  I also believe it helps my mood, and maybe takes away some of the aches and slight vaginal dryness that I was developing.

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  • swanseagirl
    swanseagirl Member Posts: 393
    edited December 2010

    I'm on the train..........................

    What time do they serve drinks?

    Jules

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  • jo1955
    jo1955 Member Posts: 8,543
    edited December 2010

    Jules - Drinks are now being served

     

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  • jo1955
    jo1955 Member Posts: 8,543
    edited December 2010
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  • LtotheK
    LtotheK Member Posts: 2,095
    edited December 2010

    Hilarious re: drinks, hi Swanseagirl!  I've been on Tamox for about 2 weeks, with nothing other than an intensifying of my "warm flashes".   I did cut out the caffeine today, can't quite tell yet if that will make a difference.  I get about 4-5 warm episodes a day.  A pain in the rear, but not enough to go on Effexor or another medical intervention.  Got enough of that already, thank you!

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  • swanseagirl
    swanseagirl Member Posts: 393
    edited December 2010

    Thanks Jo, enjoyed the cocktail.

    MHP, took my second Tamox tonight. I've been having horrible hot flashes since I started chemo way back in July. I'd say about 6 a day and night sweats nearly every night. I can only imagine how bad it is going to get on Tamox. Sighhhhhhhhhhhhhh

    I hear there is weight loss with the drug. One can only hope?

    Does caffeine encourage hot flashes?  That's about my only vice these day

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  • Chevyboy
    Chevyboy Member Posts: 10,786
    edited December 2010

    Oh Man, I lost my post!  I tried to go back & see how to spell BEANIUS & it dropped off the face of the earth! 

    I was SAYING, JO,  that the little pictures added to our thread are so cute!  And drinks?  Make mine a White Russian followed by an Amaretto Screwdriver!  Hah!  (Except maybe not all in the same day)....or maybe so! 

    The TRAIN boss, the TRAIN!!!!!!!!!  Swanseagirl....you can ride on the top of the engine, hanging on for dear life!  Maybe there you will be helped with those hot flashes!   With you taking the chemo, maybe the Tamoxifen will spare you anymore trouble!  But try drinking de-caf!  I know that caffeine can really make heart-burn flare up, especially  in the afternoons & evenings, not to mention NOT being able to sleep for 65 hours straight!     (but just MAYbe, you could try regular coffee with Bailey's, & that would counteract the caffeine?)  It's a thought.

    So Beanius our little conductor!  You tell these gals, if anyone falls off the train, you'll just throw them a rope and we'll drag them! Wink   I'll be riding in the caboose to catch any gals trying to make a break for it.....

    So obviously I can't go back one page, without losing this, so I better quit while I'm ahead.   I KNOW there is a way, but not now, not this minute.....

    Have a fun day fellow passengers! xoxxooxoxoxo

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  • LtotheK
    LtotheK Member Posts: 2,095
    edited December 2010

    Swansea, I'm so furious about everything I supposedly have to give up that I'm nearly willing to suffer through the hot flashes.  Yes, caffeine can be a culprit. So there you have it:  no drinking, smoking, no dairy, wheat, sugar, soy (according to my naturopath) and no coffee.  That leaves us with kale, bison bits, and water. 

    Seriously, try out decaf for a few days.  I started coming off caffeine yesterday, had a wholloper of a headache, but if it'll slow down the hot flashes and the sleepless nights, great.  I don't get night sweats anymore, but I do get warm/cold/warm/cold to the point where I don't think I've slept a solid 8 in months.

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  • jo1955
    jo1955 Member Posts: 8,543
    edited December 2010

    I post a lot of pictures on the other threads I am on.  Makes it fun and helps some to laugh which is what we need.

    Gonna start Tamox soon and I am determined to manage it and my caffeine at the same time.  I love my coffee - really don't drink too much of it, but gotta have the kick start in the morning.  I have the hot flashes already so what is are a few more to contend with.

     

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  • CatbirdC
    CatbirdC Member Posts: 299
    edited December 2010

    Jo~

    Cutting out the caffeine did nothing to alleviate any se's for me but did give me on big headache!

    Hope that helps you feel a bit better about keeping your morning cup of jazzed up coffee.

    Catbird

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  • jo1955
    jo1955 Member Posts: 8,543
    edited December 2010

    CatbirdC - That is good to know.  I wouldn't want to come to work grumpy.

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  • rosesrx
    rosesrx Member Posts: 458
    edited December 2010

    Bison bits ha  what about the AG (asparagus) , salmon and brussel sprouts ugg.

    I 'll be there for the drinks simple 7 & 7 for me. 

    Go for my 6 month surgical follup this afternoon.  A couple weeks early to make it in before the new year copays and deductables.  ONC and PCP later this week .  

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  • LtotheK
    LtotheK Member Posts: 2,095
    edited December 2010

    CatbirdC is officially my "enabler"--off to go treat myself to a REAL coffee now.  I'm pretty sure it's just not worth cutting out entirely. Headache continues.

    Regarding the diet stuff, when you look at what we are really supposed to be eating, it is a mighty short list.  Veggies, limited fruits, nuts, legumes, and lean meats.  Where's the fun, I ask you.

    Seriously, I am going to look into baking with stevia.  I had some muffins a while back with it, it was great.

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  • chabba
    chabba Member Posts: 5,065
    edited December 2010

    It in not very hard to decaffeinate if you do it gradually.  Make your coffee a few days with 1/4th decaf and 3/4th regular for a few days, then use 1/2 and 1/2 for a while. then 3/4ths and 1/4.  I took about three weeks and never noticed the change.  And I've been a heavy coffee drinker since high school--all too many years ago.

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  • jo1955
    jo1955 Member Posts: 8,543
    edited December 2010

    MHP70 - I love coffee - will join you in a real coffee.

     

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  • Beanius
    Beanius Member Posts: 1,697
    edited December 2010

    Wow, to think of quitting coffee...I tried a couple times and got a bad head ache. Maybe cutting down as chabba mentioned is a good way. Humm, will have to think about this. My older sisters both quit caffeine/coffee due to hot flashes/menop symptoms. Will have to think on this...I just love my coffee buzz in the am...thanks for all the great info!!!

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  • robynkk
    robynkk Member Posts: 138
    edited December 2010

    I took tamoxifen for ONE MONTH before any SE's then BAM they hit me like a truck.  I've been off of tamox for 5 days now, extreme anxiety, heart racing, SEVERE DEPRESSION (i've never been depressed a day in my life before this), sick to my stomach, crying all day, I can't stand it.  I won't go back on it.  No hot flashes though, but I'm 50 and premenaupausal, I probably spelled that wrong!  Good luck to all of you ladies on it, I wish I'd done more research before I started it, I never would have!

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  • jo1955
    jo1955 Member Posts: 8,543
    edited December 2010

    robynkk - I have gone through 2 of the AI's - Arimidex & Femara.  Both gave me severe nausea - Arimindex after 3 week - Femara after 7 days.  While on Femara I also had days when I was disoriented.  Those are nasty and won't work for me.

    Seems my only options are - to try Tamox or do nothing.  What to do?   What to do? 

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  • bcincolorado
    bcincolorado Member Posts: 5,758
    edited December 2010

    Well I can't say I drink coffee, but give me a Diet Coke in the morning and I'm good!  I don't think it makes any difference in the SE.

    Does everyone have "set times" for the train to stop at their station to take off?  I seem to get flashes at set times day and night like clockwork.

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  • jo1955
    jo1955 Member Posts: 8,543
    edited December 2010

    bcincolorado - I couldn't set a watch by it but the train isn't too far off schedule.  Wish it wouldn't make so many frequent stops at night.  Screws with the sleep

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  • bcincolorado
    bcincolorado Member Posts: 5,758
    edited December 2010

    Yes, it certainly does!  The ones in the day aren't as bad since I'm awake, but those night runs can make getting through the day a little rough.  I have 3.  Midnight, 2:30 and 4:00.

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  • jo1955
    jo1955 Member Posts: 8,543
    edited December 2010

    My stops are at 11:00, Midnight, 1:30, 2:30 and 4:30 for a total of 5.

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  • bcincolorado
    bcincolorado Member Posts: 5,758
    edited December 2010

    You need some express runs going!

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  • jo1955
    jo1955 Member Posts: 8,543
    edited December 2010

    No kidding!  It is 7:30 where I am and I could crawl under the covers and go to sleep.  Could get in a few zzzz's until the first train comes in

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  • JanetinVirginia
    JanetinVirginia Member Posts: 1,516
    edited December 2010

    I think I will be boarding your train soon.  Have tried Femara & Arimidex.  Both gave me immediate heart side effects:(

    And speaking of trains, I'd rather be...... "goin back to a simpler place & time on that midnight train to Georgia!"   :):) 

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