Start Tamoxifen-April/May 2011

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  • Rennasus
    Rennasus Member Posts: 1,267
    edited May 2011

    That's a good idea, tomorrow I'll take it at night and see if that helps! (Maybe I won't need a sleeping pill either!)

    I wonder if that SE goes away with time... maybe someone will chime in who has been on it for several months and let us know! 

    FYI: Thyroid meds should always be taken alone (without any meds or vitamins) and on an empty stomach.

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  • TonLee
    TonLee Member Posts: 2,626
    edited May 2011

    Thanks Renn...I take my thyroid (synthroid and Armour) first thing in the am with coffee...lol.  I don't eat for hours.  But thanks!!

    Let me know how it works for you....I'm hoping it will help me sleep better too :)

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  • TonLee
    TonLee Member Posts: 2,626
    edited May 2011

    Well I def. like taking my Tamox at night better.  Yesterday and today I have 1000 times more energy...fatigue is gone....and hunger is under control...(though I woke up after dreaming about rivers of fudge...lol)

    Spoke with Dr today.  He said most women who report fatigue also report it gets better after a few months.  Yeah.  I think they just get used to it. 

    Anyway, taking it at night seems to be the trick for me.  Hope that helps. :)

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  • AnnetteS
    AnnetteS Member Posts: 180
    edited May 2011

    I started this morning with my first pill.  I picked them up last night and just started bawling as I walked out of the pharmacy.....I took it this morning because I thought that I read people saying that they had trouble sleeping....We will see how this goes.  One down. Only 1,826 more to go  :-)

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  • Rennasus
    Rennasus Member Posts: 1,267
    edited May 2011

    Annette: That was my exact post when I started Tamox on March 24: Only 1,826 more to go! ;-) Hope you have smooth sailing!

    As TonLee states above, I think Tamox in the AM was causing me fatigue as well. Today I took it at 4 PM (rather than 9 AM) and I WASN'T EXHAUSTED! Hopefully I can sleep tonight! Will keep you posted.

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  • TonLee
    TonLee Member Posts: 2,626
    edited May 2011

    Hey Renn,

    Are you hypothyroid too?

    My endo said that Tamoxifen can cause the TSH to rise, so be on the lookout for hypo symptoms (buddah belly, fatigue, hair loss...basically the Tamox side effects, lol)...My endo is giving me blood tests every three months (prob more) to monitor it...something about TSH goes up after 3 months, then comes down and levels out about 6 ...

    Also it can cause a spike in T3 (which makes a body jittery).

    This taking it at night is really working out for me...it's like a sleeping pill!!

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  • SheriBell
    SheriBell Member Posts: 393
    edited May 2011

    I just got my script written after my "meeting" with a pharmacist.  I won't be taking the Tamox for a week though because I am in the process of getting a 2nd opinion from one more oncologist just to see if he has the same therapy solution as my primary onco does.  My appt is next week.  If he agrees (which I think he will) I will be joining you all in the Tamox pool.   My pathology is one that is "all over the place" - low stage and grade of cancer, but was in both breasts, but no lymph involvement, but onco score of 20, but highly er/pr+....makes my head spin.  My primary onco thinks I am fine without chemo but 5 years of tamox and then aromatase inhibitor for another 5 years.   She also says 4 rounds of chemo would be fine if I wanted that for extra protection but she feels it wouldn't make much difference.   Is this whole thing just a crap shoot?  dang!

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  • AnnetteS
    AnnetteS Member Posts: 180
    edited May 2011

    Renn, great minds think alike :-)

    Was taking it at night better?

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  • Rennasus
    Rennasus Member Posts: 1,267
    edited May 2011

    TonLee: yes, I am hypothyroid. i did NOT know Tamox affects TSH or T3. Just one more thing to worry about! Oy it never ends!!

    Annette, yes they do! ;-)

    Today I was as exhausted as ever, and I took the Tamox yesterday afternoon. Today I took it at 2PM. Tomorrow I'm going to try it at night.

    I am beginning to wonder now if it is my thyroid.  Thanks for the head's up, TonLee!

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  • TonLee
    TonLee Member Posts: 2,626
    edited May 2011

    Sheri,

    Seems like it is a bit of a "crap shoot" doesn't it?  One Onc will say chemo, another says it's not required.

    I see you had no node involvement.  That's good.  It'd be GREAT if the lymph was the only way for our cancer to travel.  Then we'd know, no lymphs means it didn't get out...but since it's not...well that's where the uncertainly arises.  And so many of our hard choices.

    Tamoxifen seems a small price to pay for my life though.  Especially as I've read a lot of symptoms resolve after a few months....

    Good luck on your second opinion.

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  • TonLee
    TonLee Member Posts: 2,626
    edited May 2011

    Renn,

    I can't take it except right at bedtime or I get fatigued.  It's on the dresser beside my bed.  I pop it as I'm laying down.  So far, it's worked like a charm.

    I've read it takes 3 months to affect TCH, but I don't believe it.  Every spring and fall I get my thyroid meds adjusted (body needs more in winter, less in summer)...I can always tell in the spring when it's time to adjust because I get jittery and have hyper-symptoms including high Blood pressure.

    5 days before Tamox my hyper symptoms started (indicating it was time to cut my dose).  Within 2 days of taking Tamox however, the symptoms were completely gone and had actually gone the other way...fatigue, loose belly, waking up exhausted, etc.

    You know that 3 o'clock nap you need when you're hypo? The first few days on Tamox, taking in the morning, I NEEDED that nap.....but since taking it at night, and going back up on my thyroid meds....I'm good.

    I took a blood test on Tuesday so I'm curious to see what my TSH will be.  I'd just gotten this thyroid thing mastered after 5 years of working it....and now I have to start all over...grrrrr!

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  • Rennasus
    Rennasus Member Posts: 1,267
    edited May 2011

    TonLee, I hear ya on the thyroid issue! It is such a hormonal dance to get adjusted the thyroid to where you're feeling good when you are hypothyroid, that to then have it thrown off by Tamox... guess I shouldn't be surprised since BC is the gift that keeps on giving!! Def. let us know what happens Tuesday!

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  • TonLee
    TonLee Member Posts: 2,626
    edited May 2011

    Renn,

    Heard from my Endo today.  I was right...my normal spring adjustment (down on the synthroid/Armour) isn't going to work out this year.

    That means the Tamox is pushing my TSH higher...though the endo said it's "likely" too soon for that to happen...but we'll monitor it.  He also mentioned TSH isn't the best indicator of thyroid function while on Tamox, that TSH can be "normal", but free T3 can be high because of the Tamox...

    I'm going to read some on it.

    Hope that helps!!

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  • okeefe7544
    okeefe7544 Member Posts: 16
    edited May 2011

    This is my first post!!  On my second day for Tamoxifen.  Just trying to be a trooper but some days I just have had to much!!  I am concerned about the side effects, if they happen how long does it take?  I am worried about mood swings?  Weight loss would be good, but I heard others had weight gain?!  I am miserable about my spacers, feels like I am wearing a medal bra held on by a rubber band.  When will this nightmare be over!!!

    Taking 20mg Tamoxifen, I am taking this at night!!  We will see how it goes!!

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  • TonLee
    TonLee Member Posts: 2,626
    edited May 2011

    Welcome Okeefe!

    Ok, last night I had itchiness.  I couldn't sleep very well...(too much coffee yesterday..I hope)...so all night it felt like there were creepy crawlies all over me...lol....I kept scratching...

    And scratching...and scratching..

    Doesn't help that I'm trying to adjust to a new bed.

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  • Rennasus
    Rennasus Member Posts: 1,267
    edited May 2011

    TonLee: Thanks for the thyroid report! I need to get with my doc on that.

    Re: the itchiness...I know what you mean with that too; I started a thread here called Help! Dry Skin on Tamoxifen! I will say that since I started that thread, the itchiness is not nearly as bad. So again, I think the body just needs time to adjust.

    Happy Weekend! 

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  • SheriBell
    SheriBell Member Posts: 393
    edited May 2011

    Be careful with itchiness - sometimes that can be a sign of an allergic reaction.  Watch for welts.

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  • TonLee
    TonLee Member Posts: 2,626
    edited May 2011

    Thanks Sheri...no itchiness last night...so I will assume it is likely to come and go for awhile.....

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  • SheriBell
    SheriBell Member Posts: 393
    edited May 2011

    Good deal.  I am the allergy queen so I know how these things can go down.  You think you have dry skin and the next thing you know you are covered in bumps!   AHHHHHHH!   I wonder what they would do if one was allergic to Tamoxifin?

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  • Sherbear
    Sherbear Member Posts: 215
    edited May 2011

    Been on it now for a little over 2 weeks and so far not really feeling much different.  Have noticed that it's been a bit harder getting up in the AM, but my bedtime hasn't been that ideal over the last week so I'm thinking that is the issue there.  No joint pain, was told that since it affects your metabolism to maybe expect a little weight gain, but my onc says I'm young and active so I may not experience that.  I really hope to avoid that due to the whole estrogen thing AND the fact that I'm vain, lol.  Hope everyone is doing alright!

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  • TonLee
    TonLee Member Posts: 2,626
    edited May 2011

    Sheri,

    My Ob Onc said if I have problems with Tamoxifen then surgery is the only alternative, followed by an AI.  (Unless of course I chose nothing :)

    Great to read Sher!  Hope it continues to go well for you.

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  • Sherbear
    Sherbear Member Posts: 215
    edited May 2011

    Thanks TonLee!  I just hope it's actually working, although I know a lot of onc's don't put much into the tests for metabolization, mine did say that if I had hot flashes, that was enough to know lol.  I have luke-warm flashes from chemo that have increased minimally since starting Tam.  You're damned if you have SE's and you're damned if you don't lol.  

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  • TonLee
    TonLee Member Posts: 2,626
    edited May 2011

    So we know Tamoxifen is an anti-estrogen, meaning one of the things it does is keep breast tissue from uptaking estrogen. 

    It is also a (my word) super-estrogen for the uterus and bones...meaning it acts as if we're taking estrogen in those areas..

    So now I'm wondering.  My face is breaking out.  I haven't had anything but smooth clear skin since before DX.  Yet, right now, when I run my hand across my browless face, I can feel little bumps that want so bad to be acne...and the PMS bloat?  I have that 24/7 now.

    So basically, I feel as if I will start a period any second.....you know that feeling you get?  How the skin re-acts?  The swelling?  The craving sweets?  I HAVE ALL THAT!!  (Even the grumpiness...which I admit may just be a conditioned response...heh.)

    I hope it goes away....eventually.

    Right now I'm watching my calories and I'm not gaining weight...but my muscles seem to have more fluid, or more fluid is covering them because they're softer, rounder....In fact I'm headed to the gym on my usual off day to try to buff them back into shape.

    Ok, I'm done complaining.  Truth is, if it keeps my cancer from coming back....I'll be a browless, round, grumpy, acne ridden woman....for awhile at least. :)

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  • pejkug3
    pejkug3 Member Posts: 902
    edited May 2011

    I'm putting this in my favorite threads.

    I haven't started Tamoxifen yet, but it's coming soon.  I'm having TCH #5 next week.  How long do they wait until they start you on Tamox.?

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  • TonLee
    TonLee Member Posts: 2,626
    edited May 2011

    ARG!  I just typed a response and BC ate it!

    I started Tamox 4 weeks after TCH #6.  My Onc let me decide.  I could wait until after rads or start after TCH.  He said the newest studies show there is no problem between Tamox and Rads...

    I started because I didn't know when I'd finally get around to rads (healing issues)...

    Let me know how you respond....I can def. tell a difference in my body...I weigh the same, wear the same size clothes, but feel/look "rounder" (ie fatter imo) ... my husband says I'm crazy..and maybe I am, it's only been a couple weeks....

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  • Rennasus
    Rennasus Member Posts: 1,267
    edited May 2011

    TonLee, you're not crazy! It makes sense that "PMS"-type symptoms accompany Tamox. I have been a little more "on edge" than normal. It is a hormonal, PMS-y kinda thing. I'm just plain bitchy! Trying to contain myself! My waist has also gotten thicker; I have gained a couple pounds. Exercise is the only cure!

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  • TonLee
    TonLee Member Posts: 2,626
    edited May 2011

    Renn,

    I exercise every single day....have for years....and my waist is "thicker" too...bloated, whatever.  Pisses me off.  heh.

    I did long distance running for almost 20 years.  I had to stop because my left knee started having problems (runner's knee)..so I found other, non-impact ways to fulfill cardio (cross trainer) and weight training for muscle. 

    So my knee was good, for several years.

    Two days ago it started aching again.  Like it did when I was running 90 miles a week.

    I'm going to buy some liquid glucosomine this weekend.  I can NOT start having knee pain again....

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  • Rennasus
    Rennasus Member Posts: 1,267
    edited May 2011

    Does the glucosomine really work? Let me know.

    I did a really long, hilly hike yesterday, and today my knee hurts ... it is an old injury that normally only flairs up after I have been running on it. It has not hurt in years.

    Tamox, or coincidence? (sounds like a thriller!) 

    Have a good weekend! 

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  • TonLee
    TonLee Member Posts: 2,626
    edited May 2011

    Renn,

    Joint pain is a SE, so maybe its the Tamox.  I will let you know about the glucosamine!

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  • Rennasus
    Rennasus Member Posts: 1,267
    edited May 2011

    Have heard that from others but I have not had any aches or pains on the Tammy until yesterday (I've been on it since March 24). Please do let us know if glucosamine works.

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