Start Tamoxifen-April/May 2011

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  • Cowboygirl36
    Cowboygirl36 Member Posts: 3
    edited July 2011

    I am 36 and was diagnosed with Breast Cancer a year ago. I had the cancer on my right side but opted for a bilateral mastectomy with reconstruction. I had 1 lymph node that had a minute amount of cancer in it. I had 16 chemotherapy treatments over 20 weeks, had my last one on November 3,2010. I began taking Tamoxifen at the end of November and I have pretty severe side effects. I have Hot flashes many, many times each day and night, I have terrible night sweats, and I sweat during the day also, and I have never been one to sweat even when outside on the hottest of days I wouldn't sweat until now. I have mood swings, but those are not severe but it is still one SE I have to deal with. I have had some weight gain in the past month and it will not go away, I eat like a horse and never seem to be satisfied. I have body aches pretty regular,  but again that part of it is not too severe, I take prescription strength Naproxen Sodium and that keeps that part pretty controllable.The thing I am having the very most trouble with at this time is Insomnia. I have never had trouble sleeping, until now. I am absolutely worn out but I just can not sleep. I have a couple of prescriptions that they have given me, and I am normally a very lightweight when it comes to nedication, it never took much to knock me out, but even when I take the maximum dose of the medication, I still don't sleep. I have 4 children, 3 are under the age of 8 and it is very hard to try to be all I need to be for them without the proper rest. I also have found that I can not concentrate very well, I get distracted so very easily, and my memory is for the birds....short term and long term memory is not too good anymore. I am only 36 so that is something that I find very disturbing. I don't know what the answer to all these symptoms are but something's gotta give. I will go to my doctor on July 20 and will discuss all this and I am sure she will once again push some kind of anti-depressant on me as she has every other time I have been to her, and I have been very adament that I don't want to be on that kind of medication. I am tempted to stop taking the tamoxifen, but I have such fear of the cancer coming back that I am scared to stop taking it. I thought at first the side effects would slowly go away as my body got use to the medication, but they are getting worse and from what I have read online they may keep getting worse the whole time I am on it......Anyone else having these same problems?   Also I have lost my eyelashes 3 times since my last chemo treatment, not sure what that's all about.

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

    Stacie,

    So sorry to read you're having such complications on Tamoxifen.

    I have some insomnia, hot flashes, etc, and have noticed that any weight, even temporary is entirely in my belly now.

    My worst problem is joint pain.  Whoa.  It's pretty harsh.  I squatted down in the grocery store today and groaned with pain as I stood. 

    Do you know how much ER+ you were?  I understand some Oncs put all ER+ women on Tamoxifen, while others will usually look at the percentage....do you know yours?

    Besides stopping Tamoxifen (which you said you don't want to do)...is a oopherectomy plausible?  My Onc said if I really hate Tamox I could have an ooph and take an AI.

    I'm sorry you're having such a hard time.  And with little ones....

    (HUGS)

    Tonya

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  • GirlFriday
    GirlFriday Member Posts: 461
    edited July 2011

    I'm so glad someone mentioned the memory loss...I can't seem to do anything.  And I feel like I have PMS 24/7 with minimal release.  I've been on it for 7 weeks now, and my warm flashes have minimized, but the body aches have increased.  I just turned 38, and I have trouble getting up from a deep knee bend.  Groans and pants are just the beginning, then I start grunting as I make my way to standing.  I noticed the knuckes on my right hand of swollen...can't wear rings I've worn for years, but left hand is still okay.  I've stopped sleeping deeply too, unless I take Benedryll, which I do about once a week.  I feel like I think/dream all night, and I get up to pee about 4 times each night.  I think I pee more during the day too.  I noticed two glasses of wine will make for a miserable night of warm flashes, and restlessness.  For the most part, I'm willing to ride this out, but the emtional roller coaster, and the memory issues really get to me.  I keep thinking if I just get a good nights sleep, all will be well...but that doesn't seem to happen either.  I also feel more fatigued...after rads I thought I was doing well, but I think Tamoxifen is bringing on a similar fatigued feeling.  I heard 90 days for the gambit of SE's, but new one can pop up even years later.  I caution against ooperectomy, only because of bone loss, and heart issues.  I would really research it and get multiple opinions...as some docs just want to cut, and frankly, I think we need to find a way to balance what our bodies do rather than just yank everything out. 

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  • wenweb
    wenweb Member Posts: 1,107
    edited July 2011
    GirlFriday I'm pretty sure that Benadryl and Tamoxifen don't mix.  You might be unintentionally inhibiting the action of the Tamoxifen.  Please check it out.
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  • TonLee
    TonLee Member Posts: 2,626
    edited July 2011


    Girl,

    I take 500mg of Magnesium Citrate at night.  It really helps me sleep and has other benefits as well....besides being good for you!

    I don't take Benadryl unless it's life and death...it makes me feel worse than chemo.

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  • GirlFriday
    GirlFriday Member Posts: 461
    edited July 2011

    OMG...there is an interaction between them benadryl and tamoxifen.  Thank you for telling me to check wenweb!  The pharmacist suggested Melatonin.   I'll look into Mag Citrate too!  

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  • wenweb
    wenweb Member Posts: 1,107
    edited July 2011
    GirlFriday You are most welcome.  Good-luck!!
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  • Omaz
    Omaz Member Posts: 5,497
    edited July 2011
    GirlFriday - If you need an old-fashioned anti-histamine you could consider chlorpheniramine, I don't think that interacts with tamoxifen (please some one let me know if it does).
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  • GirlFriday
    GirlFriday Member Posts: 461
    edited July 2011

    Omaz, I don't have allergies, I just took it on occassion to knock me out for a full nights sleep.  I'm looking into other things like Melatonin now.  Per drugs.com I don't see any interaction with Tamoxifen and chlorpheniramine.

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  • BA41
    BA41 Member Posts: 5
    edited July 2011

    Hi everyone,

    I am new to this discussion thing.  I called my doctor last week about some Tamox side effects.  I started T around 5/15.  My biggest side effect has been bitchiness!  I mean everyone I see makes me angry.  I found myself yelling at grocery clerks, people at work, it is almost uncontrollable.  Last week I developed severe anxiety and called my onc.  She said to split the tablet and take 1/2 a.m. and 1/2 p.m.  After 5 days break, I felt really good.  Had to start again yesterday, now I am reading about the thyroid thing.  I take Synthroid for hypo.  All I need is for the thyroid to slow down more, UGH.

    Did anyone else have severe bad mood and anxiety?

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

    BA...

    I don't have the moodiness...in fact I feel more level than I ever have....having a period every month made me cranky for about 9 days....now, nadda.

    As far as your thyroid.  Just have your Endo/General Pract. Dr keeep up on the blood work (TSH)..though I have read that TSH is not reliable alone when on Tamox, that a free T4 and free T3 must also be done.

    I had to go up on 25 mg Synthroid last month after 2 months of being on Tamox. 

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  • Omaz
    Omaz Member Posts: 5,497
    edited July 2011
    GirlFriday - I use the chlortrimeton 4mg plus 3mg melatonin to help me sleep.
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  • Cowboygirl36
    Cowboygirl36 Member Posts: 3
    edited July 2011

    I have also noticed my hands swelling at night, but find it helps a lot to make sure I take my rings off at night. Also I talked in great length to my oncologist about having a complete hysterectomy with tubes and ovaries to see if I could eliminate the tamoxifen altogether, that was when I first was diagnosed and was just learing of my options, she said I would have to be on tamoxifen even if I did have a hysterectomy because the estrogen is produced in other parts of the body as well as the ovaries. She doesn't want me having a hysterectomy at all. I also keep thinking things will be so much better.....memory, moodiness......if I can just get a decent nights rest. My oncologist has pushed very hard to get me to take effexor for hot flashed and moodiness, but I would rather deal with those side effects than to take that stuff. My weight gain has all been in my belly as well. I feel like I look like I am abou 6 months pregnant.  Guess we have to just keep on keeping on.   

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

    Cowboy,

    I call it Buddah Belly....

    Not pretty.

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  • Omaz
    Omaz Member Posts: 5,497
    edited July 2011

    Buddah Belly - yep.

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  • GirlFriday
    GirlFriday Member Posts: 461
    edited July 2011
    I think I'm getting that too!  I've lost six pounds, but I have this paunch that I've never had before.  I was calling it Paunchie, but Buddah may be more positive! Laughing
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  • Omaz
    Omaz Member Posts: 5,497
    edited July 2011

    Rub da' belly for Good Luck!

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  • CatMom4
    CatMom4 Member Posts: 31
    edited July 2011

    I;ve had insomnia of late - been on Tamox about 4 yrs and 8 months. Think its more work related and just life stresses but its knocked me for a loop. Doc finally prescribed Ambien but I tried it once and one pill got me out for two hours then up most of the rest of the night. I've had antianxiety meds for years (panic attacks) and the Ambien is so like it one tab may not do it for me. I'm supposed to try it again and if not that then two tabs. Maybe it will work, maybe not.

    I am trying to keep myself going but you know....my onco said I will stop tamox 10/31 as that will be five years so whatever I can do to sleep even halfway decently I will, including Benadryl just not every night and never at the same time as the Tamox.

     I think we gals have had so much stress with the BC its hard to tell if its dealing with such a life changing event that causes the stress and insomnia or the Tamoxifen.

    I will check out Chlorphenirmaine - if it has a sedating effect I could sub it for the Benadryl - better choice given drug interaction. With this many years on it, I'm just at the point where I will do what is needed to get at least the min rest i need. Frustrating! I can remember after radiation, I would sleep like a baby.

     Been trying sleeptracks - some downloads for insomnia - think they may help. Only one night so far...we will see.

    I wish all you gals a good day/eve.............so thankful to even be able to just voice my frustration!

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  • CatMom4
    CatMom4 Member Posts: 31
    edited July 2011

    HI Cowboygirl!

    Don't just stop taking it - it can be so hard these SE's, but give it a shot. I used to have no sleep issues with it - had hot flashes but they come and go. Got a benign ovarian cyst and uterine polyps too - but what the Tamox helps us with is worth it if you can hang in.

    If I can offer any thoughts having been on it for over 4 years now I'm happy too. I've had some fairly benign health things pop up but don't know if its perimenopause or the Tamox. Guess once I'm done with it (which will be both a relief yet scary at the loss of its benefits) I will find out LOL

    Hope you have a restful night.

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  • wenweb
    wenweb Member Posts: 1,107
    edited July 2011
    CatMom4  Ambien or Lunesta only puts me to sleep for about 3 hours and I'm a 9 hour girl.  I doubt that I will ever take them again.  You said you have been on anti anxiety meds, but didn't mention which ones.  I have had luck with both lorazepam and diazepam for sleep. I still wake up, but can usually get right back to sleep.  I never pictured myself being one who would take" those" types of drugs, but ya gotta do what ya gotta do.  
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  • Ondagrow
    Ondagrow Member Posts: 349
    edited July 2011

    Hi All...

    I started in April 25...

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  • Omaz
    Omaz Member Posts: 5,497
    edited July 2011
    Hi sohard - How are you doing?
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  • wenweb
    wenweb Member Posts: 1,107
    edited July 2011
    Welcome sohardbnme!!
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  • TonLee
    TonLee Member Posts: 2,626
    edited July 2011

    I won't say the SE are Tamox 's fault, I'll just say it is getting all the blame.  lol

    Had some serious left side ovarian pain this week.  Serious meaning like I did before BC with my periods.  It was hot and tender to the touch, I felt bloated, and cranky.  Really cranky.  And the skin on my face is acting like it did pre-period....more oily, with some wanna-be breakouts.

    So, I wonder if this is normal.  Will I get symptoms of a monthly cycle without the bleeding??  My OB said I should not bleed at all on Tamox, and that if I do to call for an appt asap.

    I also have noticed the hot flashes have increased in number, duration, and intensity.  It's like the Tamox is working over-time because maybe my ovaries are waking up after their chemo nap.  And those puppies are pissed!!  lol

    Mammo yesterday.  Still burned from rads and getting the other boob scrunched....fun fun.

    Hope everyone is well!!

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  • ftblmom3
    ftblmom3 Member Posts: 100
    edited July 2011

    Hi Everyone! I am jumping in here, even though i started in July. But now that most have you have been on Tamoxifen for a month or two, i have a few questions/

    *When did the SE start?

    *has it affected your period?

    i have taken it only for five days now, don't feel any different. My ultimate hope is for minimal SE's and no period!! HA HA i hate my period so much. I actually delayed taking the Tamoxifen for a week because i had a lovely 10 day period...that has never happened before, it was also a week late. but i am chalking that up to radiation stress. So i will be anxious to see if my next period comes on time. It could just go away, and i would be ok with that! (did i mention i hate my period?!?!?!)

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  • PEcoach
    PEcoach Member Posts: 1
    edited July 2011

    Hello everyone,

    I was diagnosed in January, very early stage 1, had lumpetcomy and radiation.  My doctor also put me on Tamoxfin and I'm wondering if anyone is on Tamoxifin and taking Zoloft.  I have read there might me some drug interactions and was wondering if someone else is in this same situation.  If so, what did your doctor recommend?

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

    FTB,

    I don't know how old you are, or if that even matters, but my OB Onc said I shouldn't have periods on Tamox.  In fact, she said if I bleed at all to get an appt asap.  I was not even perimenopausal before BC.  She said if chemo put me in chemopause, Tamox should keep me there.

    However, I have read a few women (very few) on this board who say they still have periods, but it doesn't sound like they come as often or as much. 

    I started having SE's within the first week, most resolve and then some new ones crop up.  I expect they'll resolve as well...

    Hope that helps.

    PECoach, I used the an RX caluclator for interaction on google and found this:

    sertraline decreases effects of tamoxifen by decreasing metabolism. Significant - Monitor Closely. Inhibition of CYP2D6 metabolism to tamoxifen's active metabolite, endoxifen.

    That explains why Zoloft can make a person fat!!  It decreases metabolism.   

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  • ftblmom3
    ftblmom3 Member Posts: 100
    edited July 2011

    TonLee-i am 44, haven't had a sign of going into menopause yet, no hot flashes, period as regular as could be (except the last one) My MO is hoping i go into menopause before the 5 years is up, because according to him Armidex or another will have fewer side effects. But, i just didn't see that happening because up until now i have been so regular. I am anemic also from my periods, so i would be super happy not to have it anymore. It's only been 5 days on Tamox for me, so we will see what the next month or so brings.

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  • GirlFriday
    GirlFriday Member Posts: 461
    edited July 2011

    I thought most women still bled through Tamox...I've been on it 9 weeks, and ad two periods. They have been lighter, with less cramping.

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  • cmbear
    cmbear Member Posts: 1,086
    edited July 2011

    Hi ladies, I started Tamox back in April, just now hitting the 3 month mark. Kinda hoped the SE's would settle down, constant headaches are gone, dizziness comes and goes. Weight has stayed constant.Can't seem to get my TSH levels ok--my doc just raised me to 100 mg.  My worst complaint is my total lack of memory, short term, midterm and heck long term. I can't rememer a thing. If one more person tells me to write it in a notebook. . .  I think I should just write on my arm!! The other is my depression has seemed to have gotten worse. I have been on citalopram since DX last June. Just seems that I am blue and teary all the time. And anxiety has kicked in. My boss is not the most supportive,which makes me even more anxious. don't even get me started on sleep, I can't sleep without Ambien--tried Melatonin but it made my digestive tract a mess.

    There are moments that I just want to stop taking it. QOL. Just not sure I can do this for five years. 

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