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Bottle o Tamoxifen

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  • vivvygirl
    vivvygirl Member Posts: 171
    edited May 2009

    Hi all,

    Have just boarded the Tamoxi train 2 weeks ago and it looks like it is going to be a long journey.  Five years seems to be a long time.  Am already planning my Tamoxifen Party for April 25 2014!

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

    Welcome mab and Vivvygirl,

    Welcome to the Tamoxitrain!  Have a seat, and relax and enjoy the ride!

    Sorry you are having problems so soon on this journey, mab.  I'll be thinking of you, hoping that your tests are all ok.  Maybe it's just anxiety about what other se's you may have from the Tamoxifen...  Sending BIG HUGS your way!!

    Hugs

    Harley 

  • mab
    mab Member Posts: 14
    edited May 2009

    Harley44,

    Thanks for the encouragement. The Onc. detected wheezing from my right chest area (where the cancer was), but fortunately the chest x-rays were OK. I'm on an inhalor to see how that works and then if that doesn't do it, I'll go on antibiotics.

    I really thought about the anxiety factor, but I didn't really expect anything but hot flashes and I don't recall feeling anxious about that. Also, I would have thought I would have been more likely to have had anxiety about the 2 surgeries, the first chemo., (& when I had an allergic reaction to it and they had to take me off it and then start it up again - that really should have done it), so I don't think that's it - it's perplexing!

    I also wonder about whether it's some sort of after-effect from radiation, which I finished at the end of Febr.?

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

    mab,

    Hmmm.... good point.  The problem, I would think, would be in that you have had other treatments, and it could be an after effect, as you say. 

    No, I wasn't really thinking it was anxiety, it was just 'wishful' thinking...

    Glad to hear that the chest x-rays were good.  Hope it all comes out ok.  I'll be thinking of you.

    Hugs

    Harley

  • stefie
    stefie Member Posts: 25
    edited May 2009

    Hi ladies and Happy Mother's Day    Wow you guts are just so informed and I love to read all of your responses.  I did not know about long term se from tamox.  That is awful to thing about, the se while on it are bad enough.  I did not see where andyone mentioned what kind of long term se.  I was thinking about going off the tamox for the summer at least because I don't think I can take another summer like last year. I am afraid and do not know if this is wise.  I also have started having cold flashes so I spend all day and night taking things off and putting things on. I have never changed clothes so much in my life. My ac is broke now so a cool flash helps some. 

  • vivvygirl
    vivvygirl Member Posts: 171
    edited May 2009

    Hi All,

    Just looking for some suggestions.  Am feeling I am slipping into a bit of a hole and don't know how to get out. 

    Diagnosed in Feb 09, and it has been 8 weeks since my 2nd operation(full masc) and have been on tamoxifen for nearly 3 weeks. Having night sweats that are affecting my sleep, nausea from the tablets that last all morning, and random aches and pains in my legs.

    Before diagnosed was "on top of the world" everything was going a long fine, had energy , had been losing weight and was near my goal, and was working 2 part time jobs to set the family up financially.  Now ....no energy, no money , no motivation.

    I know that I am very lucky compared to a lot of women but at the moment not feeling that.

    Just having a little "pity party" but just need some kind words of inspiration to help me find my feet again. What have other people done in this situation?

  • bluegems
    bluegems Member Posts: 507
    edited May 2009

    vivvy,

    Hugs to you! We've all had our pity parties, and there are still more to come. First, talk with your onc about the night sweats and lack of sleep. Mine put me on Effexor, which helped enormously. Are you eating when you take the pills? I take the tamox at night - a recommendation I got from the ladies on these boards. The best thing you can do for yourself is allow yourself to move through this phase. The Effexor can help with your mood and motivation as well - even the low dose!

    I just had my first mammo after the lump and rads. It was clear! The heaviness I had been carrying for these past nine months was lifted. Hang in there, get the help you need, and do NOT be ashamed of anything you feel or think.

    Thoughts and prayers are with you.

     blue

  • mab
    mab Member Posts: 14
    edited May 2009

    Vivvy,

    It's tough, no doubt about it. But you said yourself that you know you are lucky and other women have it worse. Just hold onto that. Do nice little things for yourself and get lots of exercise as soon as you can, even if you don't feel up to it, you will be surprised at how much better it will make you feel. It will also make you stronger to deal with all of this and will help you keep off the weight. Plan a trip, even if it's low budget and even if you can't take it for a few years. It will give you something to look forward to and occupy your mind when you are in the Dr's. Ofc. or getting treatment. You'll be OK.

  • Jeanne_D
    Jeanne_D Member Posts: 50
    edited May 2009

    I finished rads last week and am thinking of NOT taking Tamoxifen.  I am scared to death of the side effects.  I just want to feel good again and not worry about uterine cancer, or a stroke, or cataracts.  Anyone else feel this way? 

     And, why only take for 5 years?  Why not the rest of your life?  Is it because it is toxic after 5 years, or, they just plain don't know.  I went 23 years without breast cancer coming back and I was not on Tamoxifen.  I think I might try without tamox and 23 years would make me a veryyyyyyyyyy old woman...lol  And, this 2nd breast cancer was a new cancer, not a recurrence. 

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

    Jeanne,


    Welcome to the Tamoxi train! 

    I am sorry I can't answer all your questions, but I can tell you the reason that our drs. only recommend taking Tamoxifen for FIVE years...  that is, from studies they've done, they found that the breast cancer cells figure out a way around the Tamoxifen...  In fact, they learn how to use Tamoxifen, and it helps them to grow, after FIVE years, that is. 

    I may not be explaining this right, but that is how it was explained to me, and that is my understanding.  My onc only wants me to take Tamoxifen for two years, and then to switch to an AI...

    Good luck with your decision.

    Hugs

    Harley

  • PatMom
    PatMom Member Posts: 322
    edited May 2009

    Vivvy,

    You are entitled to the occasional pity party!  You have already discovered one of the ways to cope which which I've found most helpful, to come to these boards and share with your sisters who are dealing with the same issues. 

    While you may not be dealing with every possible difficult treatment out there, you are still dealing with a cancer diagnosis, and all the physical and emotional distress that comes with that diagnosis. 

    If you feel that your problems are ongoing, and significant for you, the Effexor might help.  If you need help with the occasional bad day or two, Xanax may be easier to accept since it doesn't have to build up to become effective so you only take it on the days that you feel you need it.

    I agree with mab that both exercise and making plans for the future are very empowering.

    Understand that from this point forward, your life has a new normal.  In some ways it will be "worse" and in some ways it will be richer (I never would have met so many wonderful women on this board without that diagnosis) than the life you previously had planned, but it will definitely be different. 

    I hope that you find that "on top of the world' feeling again soon.

  • XXMadisonXX
    XXMadisonXX Member Posts: 1
    edited May 2009

    mab

    Several years ago I had the same problem - couldn't take deep breaths. A visit to the doctor - some tests -- nothing found -- and he said it was a 'bad habit' -- almost always suffered by children Surprised.  He also said to quit thinking about it so much.

    He said to force myself to take deep breaths and I would get back into the habit of taking deep breaths without thinking about it. 

     I hate to say it  but ... Embarassed ---  it worked. Smile

  • Karenp62
    Karenp62 Member Posts: 68
    edited May 2009

    Hi ladies

    Has anyone been prescribed Lyrica for their joint pain? I am taking Celebrex but it doesn't seem to be helping. My thumbs seem to be the worst. I can't bend them at all and if they are accidently forced to bend....ouch!!!!!!

    Karen 

  • sunshine787990
    sunshine787990 Member Posts: 101
    edited May 2009

    Help....I have been on tamoxifen for nearly 7 months...I'm swimming 3 times a week and watching what I eat...I cannot loose a pound!   Anyone else have this problem?

  • Donalee
    Donalee Member Posts: 106
    edited May 2009

    Hi everyone,

    I started Tamox in Dec. of 2008. I take 10mgs in the morning and 10mgs at night. I feel like I have morning sickness most days and, of course, hot flashes! Lately my newest thing is the damn depression! I just want to sleep. I do exercise a lot and just started back with a personal trainer. I also have 0 sex drive! My husband thinks I don't love him anymore. Should I take this up with my Onc or with my gyno? AAAAAGH!

    Amy suggestions would be helpful!

    Sunshine,

    I think the problems with the weight loss is, for me anyway, my insane cravings and eating of chocolate! I never liked it before all of this, now I just can't get enough!

    Donalee

  • JanMarch
    JanMarch Member Posts: 18
    edited May 2009

    Hi - another Tamoxi-newbie here.  I've been on it a little over a month and had night sweats and hot flashes for a couple of weeks.  Those seem to have stopped but now I'm feeling depressed.  My onc wants me to give it a few months before he prescribes Effexor to see if it will sort itself out.  I'm mainly wondering if people's SEs went away after a while?

    One more question - I'm 42 and so will be 47 when I'm finished with tamoxifen.  What's next after 5 years?  I doubt I'll be postmenopausal by then.  Am I to assume that after 5 years I don't have to worry about the estrogen in my body fueling a recurrence?  My onc says that is a bit of an unknown.  Just curious if anyone who is premenopausal has finished tamoxifen and what they are doing now.

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

    Sunshine,

    Like you I have been on Tamox for 7 months, watch what I eat, exercise 6-7 days a week and CANNOT LOSE A POUND!!  It's so frustrating.  I have gained about 12 pounds and cannot lose any of it!  I guess it's better than the alternative!

    Welome to all the newbies!

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

    Welcome to all the newbies!

    LInda,

    I also can't lose any of this weight...  I have found that I have this 'paunch', which is a bit of a pot belly...  can't get rid of it no matter what I do...  I am depressed cause I think that no matter how much I exercise, I will STILL have that extra stomach!!

  • Springtime
    Springtime Member Posts: 3,372
    edited May 2009

    I read somewhere that a lady who could not lose weight on Tamox. joined WW and then lost weight.

    I have lost but I am counting calories (I use "myfitnesspal.com") and I exercise A LOT. It is not like it used to me, I can tell you that! 

    Spring.

  • jezzy234
    jezzy234 Member Posts: 127
    edited May 2009

    Hello all.  i will start tamoxifen soon.   May I join this thread?

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

    Jess,

    Welcome to the Tamoxi-train!!  Take a seat, and get comfortable.  There are LOTS of cars here, let's see...  there is the CHOCOLATE car, the bar car, and my favorite, the pasta car!!

    I've been on this train for 1 1/2 years now. 

    Lots of luck!!

    Harley 

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

    Harley, my weight is all in my stomach too.  I have always had a tiny waist, could not find clothes that fit my properly and would have to have the waist taken in.  Now I have the opposite problem.  I am now thick waisted.  UGH! Nothing fits me from last summer, not even close.  I have had to buy all new summer clothes.  The good news is I have stopped gaining weight.  I just cannot lose anything! 

    Spring, WW helped with Tamoxostomache??  That's my new word for the day!

  • awb
    awb Member Posts: 213
    edited May 2009

    Makraz--I couldn't lose any  weight on tamox despite my attempts at diet and exercise, until I joined WW--it was all about portion control. I was eating the right things, but just not paying enough attention to how much. (the tamox always gave me an incredible appetite). So I joined WW and lost 12.5 pounds--gained a bit back, but I'm working to get it off again.

    anne

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

    Anne, Thanks for sharing.  I have gained 12 pounds!  I'll have to look into ww.  I eat well and exercise, it's very frustrating!  I'm glad you were able to lose some of your weight. I find that the weight gain is depressing the heck out of me!

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

    Hmm... that is interesting!  WW...  well, maybe I'll try it.  Nothing seems to help.

    I also have that Tamoxostomache...  I also used to have a small waist, and had to have all my clothes taken in.  Now, I feel like a blimp!! 

    Hugs

    Harley

  • sunshine787990
    sunshine787990 Member Posts: 101
    edited May 2009

    Makraz  Well that's me to a tea Tamoxostomache!!!  I also have always had a nice waist line...but since bc I cannot find it....I'm thinking it's probably hiding in the chocolate car!

  • shazzy
    shazzy Member Posts: 1
    edited May 2009

    I have been putting off starting tamoxifen because I am just so darn sick of all the negative effects this whole journey has caused!  I have been off chemo for 8 weeks and since then have had extreme joint pain!!! I also had to have another surgery to "roughen up" my x-breast area because I was still getting lymph node fluid and it caused the skin to not adhere to the muscle, so reconstruction cannot begin until that has stopped.  Anyway, got an infection in both areas that gave me a 103+ fever and now reconstruction is post-poned for a few more months.  I know I need to start taking it, (my oncologist is ok with the delay due to the infection) but I just so want to start to feel good again, and I'm afraid this will only add to the negative!  I heard you GAIN weight!  Where did you hear you loose it?  That WOULD be a positive huh?!? :-)  Would love to hear some feedback on the joint pain, and people's responses to Tamoxifen!

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

     Sunshine,

    too funny!  mine must be in the pasta car!!


    Shazzy,

    Hi... I didn't see your post.  Welcome to the Tamoxitrain!  No, I haven't heard anything about losing weight on Tamoxifen, sorry to say...   Take a seat in a comfortable car, and relax and enjoy the ride!

    Harley

  • Sydney6
    Sydney6 Member Posts: 40
    edited May 2009

    Hi Ladies

    I've been on Tamox for about 2 weeks - only 4 years and 50 weeks to go - and I'm wondering if anyone else gets dizzy or feels spacey or out of it at times (a lot of times).

    Sue

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

    Hi Sydney and welcome to the Tamoxi train!

    I have been feeling kind of spacey and out of it today, but I don't know if it's from the Tamoxifen.   The weather has been kind of yucky, and when we get these fronts coming through, I get these nasty headaches, and they are not fun.  I've been taking Tamoxifen for 1 1/2 years, and may be switching to an AI in 6 months.

    Good luck to you! 

    Harley

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