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Bottle o Tamoxifen

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Comments

  • HelenaJ
    HelenaJ Member Posts: 304
    edited May 2009

    Hi all, I am now up to 2 and a half months on Tamoxifen and "every day is an adventure".  First the gooey stuffy eyes, then abdomen pressure, then dizzy and spacey, weight loss, and now I am up to fatigue and still the stuffy eyes. The mood swings seem to have stabilised - thank god!   My reading vision has certainly changed for the worse and it coincides exactly from when I first starting taking the pills.  Funny though as I just renewed my script last week and this box has a little sticker which says "this medicine may affect mental alertness and/or coordination.  If affected, do not drive a motor vehicle or operate machinery."  What the ...  I am still running every second day but it is certainly more of a struggle.  I keep thinking I can beat this but 5 years is such a long time.  My weight has stayed the same but I certainly feel my willpower is losing the battle. 

     As I didn't do chemo (oncotype score "6") this drug is my saviour (supposedly) so I am determined to not let it bring me down but like I said 5 years (4 years 10 months) is a long time.

     Helena

  • Donalee
    Donalee Member Posts: 106
    edited May 2009

    Hi Helena,

     I tried to work out all through my chemo experience. Now I'm on Tamox and Herceptin. I keep trying to run but find it is too painful on my back and joints to take the pounding! I've hired a personal trainer at my gym and that is working out better. She really pushes me to do more than I would ever do on my own. I'm lifting a lot of heavy weights, trying to build my bone density. I think I'm going to ask for the bone density test. I think chemo zaps a lot of that away. Not sure if the Tamox does?

    Donalee

  • Sydney6
    Sydney6 Member Posts: 40
    edited May 2009

    Thanks Harley - Hopefully the dizziness will subside at some point.  It's hard to get everything done I need to do when I'm kind of out of it.  My son is graduating high school next month and I'm planning a party, but everything is such a struggle.

    Sue

  • PatMom
    PatMom Member Posts: 322
    edited May 2009

    Hi Sue, you sound like you are where I was a year ago.  I started Tamoxifen on May 1, and my daughter and niece both graduated on the same day in mid-June.  I threw a party for both of them. 

    Believe me, you will make it through.  Your son is old enough to help with the cleaning and the shopping.  The people who are coming to the party are there to celebrate your son (and his friends) making it through high school, and they will be happy as long as there is tasty food to eat, something to drink, and the house is clean enough that they aren't worried about catching something if they eat or drink food prepared there.

    You will be amazed how willing family and friends will be to pitch in and help.  Think fun, and easy prep and cleanup as you are making choices about the menu etc.  Give yourself more time than usual to get things done.  Build rest breaks into your prep schedule, and don't worry if you don't get everything done that you wanted to... the idea is for everyone (including you) to enjoy themselves, not to outdo a professional party planner.

  • vettegal
    vettegal Member Posts: 5
    edited May 2009

    Been on tamox since July 1 2008 and jusrt had hysterectomy and dr wanted me to switch to arimidex and upon further research I said no and staying on tamox. My body is used to it now and the only side effects I have are hot flashes/night sweats my leg pain is off and on motrin helps it out. No depression/anxiety

    I wanna join the tamox train. Has it left the station yet?

    I am 43 and switching to arimidex was scary and I feel very happy with my choise.

  • KEW
    KEW Member Posts: 450
    edited May 2009

    I was on Tamoxifen for 6 months before I had my hyster/ooph and I will begin taking it again this Saturday.  I am not switching to an AI, for me, there isn't enough information on long term effects.  I don't know what it will be like when I take it again with my estrogen bombs out, but before, I lost about 8 pounds, had fewer mood swings--frankly I was happier on the Tamoxifen than I had been for a long time--I was really jerked around each month by my cycle, my skin looks great, I did have dry eyes at first, but that stopped.  I had two months of night sweats, but that stopped (but has started up again since hyster/ooph).  I was terrified to take the Tamoxifen, but my mother died of breast cancer and she didn't take it, so I have taken it.  I don't have to worry about uterine cancer anymore, but clots and cataracts a potential serious SEs, I hope I don't have. I was more tired, but I can't attribute that directly to the Tamoxifen--heck, being a single mom with no family, getting the diagnosis, surgery, and going back to work (which was hugely exhausting and stressful before I went on medical leave) are all exhausting.  I didn't have chemo because of my Oncotype score, so maybe I'm more willing to deal with Tamoxifen.  I just feel I have to have a good relationship with it, so I've learned to embrace it, but I don't like taking anything, not even aspirin, so this hasn't been easy. 6 bottles down 54 more to go!

    Best,

    Karen

  • KEW
    KEW Member Posts: 450
    edited May 2009

    Donnalee--Tamoxifen protects our bones.  I had a bone density test before my hyster/ooph for a baseline.  Although Tamoxifen blocks estrogen in bc cells and some others, it protects our bones and our hearts--AIs do not.

    Karen

  • Munchy
    Munchy Member Posts: 59
    edited May 2009

    It took me a while to catch up on all these posts... it's been a while since I checked in.  Welcome to all the newbies on the train.

    Yes, the weight gain is mostly around the middle.  Here's why... Tamoxifen blocks the estrogen in your body.  Estrogen production is what accounts for a woman's feminine shape.  It causes any fat you carry to be distributed to the hips and thighs.  In the absence of estrogen, fat deposits will revert to the male pattern - around the waist and belly.  That's why women get thick around the middle after menopause.   Taking the tamoxifen just makes this natural part of aging happen earlier, faster and in an exagerated way.  This is one of the many reasons why I hate this drug - it is making me old before my time.  Argh!

    As far as the weight gain is concerned, in my case, I know that it is not from eating too much.  I have always controlled my portion sizes and counted calories.  I have always exercised.  I am not hungrier now on Tamoxifen.  In fact, I feel less hungry because my metabolism has slowed so much.

    Anyway, the big news is that I have cut back on the amount of Tamoxifen I am taking.  I have not checked this with my onc because I am afraid he would disagree.  I have not even told my husband that I have done this.  I just feel that with my small body size (4'9") why should I take the same 20mg a day that larger women take?  Soooo, I am taking the 20 mg every other day and on the in-between days, only taking 10mg.  I can feel the difference.  I am not so bloated all the time and I have lost a pound.  Really not enough to make a dent in this weight gain, but the most I have been able to lose since starting this thing.

    Will keep you posted. 

  • HelenaJ
    HelenaJ Member Posts: 304
    edited May 2009

    Hi Donalee, I can understand why it is easier with a personal trainer - just to get that motivation and push must be such a help!  And yes, Tamoxifen does protect our bones - some non breast cancer patients take it just for that reason????!!!

    Hi Kew, wow you sound like me (except your journey sounds like it has been so much tougher especially being a single mum) but with our oncotype scores and no chemo we do need to embrace Tamoxifen, regardless of the side effects.  It is our hope.  Two bottles down for me!!!

    Hi Munchy - I think that is good news about the weight distribution - although I am slim I have always suffered from gaining extra weight around my thighs and hips - but I guess I won't like the extra thickness around my belly either :(  And as for the male pattern, I have noticed how much more testosterone I have - it's actually great - I find I can stand my ground and not get bothered or sensitive about so many things now - thank you Tamoxifen (or is just the whole breast cancer journey stuff?).  Make sure you let us know how the reduced Tamoxifen affects you - good luck.

    Helena

  • fairy49
    fairy49 Member Posts: 536
    edited May 2009

    I read this article today, I copied the part regarding tamoxifen/AL's dosages, it seems that MAYBE "they" are realizing that the same dose shouldn't be given to everyone.......

    "This study justifies the use of drugs that help decrease estrogen levels like tamoxifen and aromatase inhibitors," Wu said. "[In the future], we may want to titrate different levels of anti-estrogen medications. Right now, we have a standard dosage for everyone, whereas women who are heavier or other women who may have higher estrogen levels for one reason or another may need larger doses."


    SOURCES: Cheryl L. Rock, Ph.D., professor, family and preventive medicine, University of California, San Diego, School of Medicine; Jennifer Wu, M.D., obstetrician/gynecologist, Lenox Hill Hospital, New York City; March 2008, Cancer Epidemiology, Biomarkers & Prevention

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

    oh, I know why my stomach is so big...  estrogen is stored in fat, and when we take Tamoxifen, it blocks our estrogen.  Well, our bodies want ( and NEED) estrogen, so they find a place to store it...  they make FAT...

    Editted to correct...  Tamoxifen BLOCKS estrogen, it doesn't 'take it away', but the end result is the same....  I think ya'll know what I was trying to say! 

  • sunshine787990
    sunshine787990 Member Posts: 101
    edited May 2009

    Harley44   Yup that's what my belly looks like is FAT....FAT....FAT.....I now have a large storage unit in that area!    Too bad I can't charge rent! 

  • sandy2009
    sandy2009 Member Posts: 29
    edited May 2009

    Hi Karen (KEW),

    I just started Tamoxifen on May 1st, so far everything is okay.. I feel more sad at times, some hot flashes that's it.  I will also be starting a bisphosphanate today.. Zometa.  I'm on a clinical trial. 

    I chose no chemo, I had the lower oncotype of 14 - similiar to you.  Hope you're doing well.
    Sandy

  • Munchy
    Munchy Member Posts: 59
    edited May 2009

    Fairy... very interesting and makes so much sense.

    Harley... you are so right.  That is exactly what is happening.

    I have been on the reduced mgs for about two weeks, and so far, my hot flashes have reduced from about 4 or 5 real bad ones each day (and horrible night sweats), to only 1 or 2 a day and much better nights.  Is it my imagination?  The experiment continues...

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

    You ladies are correct about the Tamox.  Just ask my new belly!

  • KEW
    KEW Member Posts: 450
    edited May 2009

    Sandy 2009--Good luck on the Tamoxifen.  I started again today instead of waiting until Saturday.  I opted out of the trial you are in, but now wish I hadn't--I just couldn't make another decision at that point.  Keep in touch and let me know how you are doing.

    Hugs,

    Karen

  • kjbell
    kjbell Member Posts: 454
    edited May 2009

    My hot flashes, or warm flashes, are increasing. I take 75mg of Effexor for them. Has anyone tried a higher dose? I've been on the tamox for about 5 weeks. I have not lost 1 pound, but have vowed to start walking on the treadmill and dieting after the holiday w/e. It is interesting to know why we get fat around the middle. I have always had the pear shaped body. My waist is tiny compared to my hips. Even after 3 kids, my tummy is flat, but my butt, hips and thighs, aahh!! Waist bands on pants have always been huge on my small waist, but I would need to buy the size that fit the big hips. So if my waist will fill out more, I will be happy. I have 2 pairs of big size capris that I am rotating. I refuse to buy any more fat clothes. The drug facts that came with the tamoxifen said weight loss. Ha Ha.

  • revkat
    revkat Member Posts: 122
    edited May 2009

    kjbell, I take 150 of the extended release Effexor, as much for the anti-depressant effect as for the hot flashes. I still get hot flashes, but they are more like warm flushes than what I had during chemo. As the weather heats up I notice that I am more apt to flush when I am hot -- I'm not looking forward to summer.  I don't know how much is the tamox and how much is that chemo pushed me into menapause. I didn't notice a reduction in flashes after going from 75 to 150 of the Effexor, so if you are hoping more will help with that, from my sample of one I wouldn't expect it to.

  • donnajrn
    donnajrn Member Posts: 31
    edited May 2009

    Greeting, I have not posted in a long long time,  I had my surgery 1 year ago.......did radiation and finished last August (MY how time flies!!!!)  My onco started me on Effexor in August in preparation of Tamoxifen.  Started my Tamoxifen in November and am not a happy camper.  Saw my internist 2 weeks ago and was talking about my weight gain....15 pounds since I finished radiation.  She told me her patients that are on Effexor start gaining weight and cannot seem to stop it.  She did switch my to Cymbalta (not sure if I can take that though)  Saw my surgeon this week and he told me he can tell I am not myself.  I am taking many medications to counteract the effects of effexor (big time constipation and weight gain with fluid retention )and tamoxifen(big middle and joint aches).  We talked about quality of life.  I wonder why I am going through all of this.  I had DCIS and all was removed with the sterotactic biopsy....the lumpectomy showed nothing!!!!  Certainly I do not want to say in 2 years....why did I do this, but I also wonder why I am going through all of this with such a diagnosis that I have.  I too, have developed a middle and belly and I have never had that in my life............I hate the way I feel.  He felt I could go off the tamoxifen and said he was going to call my oncologist.(I know she will not want me to go off it)...........I just do not know what to do. 

    Donna

  • Jisman
    Jisman Member Posts: 96
    edited May 2009

    Hi All.  It's been almost a month since I was last on-line with this post.  I've not had a chance to read through all the posts, just the ones on this page.  Welcome to all the newcomers.  I'm now on month 10.  Haven't had any weight loss or gain but certainly have had my excess shift around and am now carrying more around my belly - ugh.  Most annoying is the hot flashes/night sweats.  Eventhough I'm taking the generic for neurontin to help, I still wake up at least once during the night form being overheated.  Occassio0nally feel joint pain - right hip and occasionally ankles.  I've been remiss in not having a regular exercise program so I know I'm not helping myself on that end.  Good luck to all with your side effects and those facing decisions.

    Joan

  • MEKC
    MEKC Member Posts: 1
    edited May 2009

    Hi All,

    Was diagnosed w/bilateral breast cancer Aug. 2006. Had lumpectomies, but it had spread to the nodes on the left, so was re-excised and had nodes removed. After healing for a bit, did 7 chemo infusions (Adriamicin, Cytoxin, and Taxotere). Finished that then had 33 radiation treatments in the TOMO machine. Have been on Tamoxifen for almost 2 years now. Would love to join your tamoxifen train! I have definitely gained weight and my muscles are very sore on a daily basis, plus my fingers and toes will actually cramp up so badly that I have to use my other hand to straighten them! Is this attributable to the tamox or the other treatments I had?

  • kjbell
    kjbell Member Posts: 454
    edited May 2009

    Revkat-thanks! I thought if I increased the dose they would go away! I did accupuncture and that did stop the frequent night sweats and hot flashes, but I get the warm flushes and they are slowly increasing everyday. I work in a nursing home (physically assisting the residents) so I am dripping in sweat thru out my shift. It is disgusting. I don't know what else to try.

  • BooBee
    BooBee Member Posts: 288
    edited May 2009

    This is from my web site.

    For sale

    Hormone Suppressors:  FDA approved to make you cry like a girl, sweat like a pig, throw flames out of every pore located in your upper torso and send you running for the closest koi pond to douse the fire at the most inopportune times.

    Don't take this if your pregnant, nursing, married, experience psychotic tendencies, multiple personalities, frequent outbursts of tears over McDonalds commercials or Hallmark cards and for God sake don't  take the antidepressants you've taken for 20+ years that have successfully prevented you from tossing your screaming children out the car window at 60 MPH.

    May cause vaginal atrophy......  (What the hell is that?  No, never mind, don't tell me I don't want to know.)

    Discontinue immediately if you're experiencing any of the following: shortness of breath, drowning in your own bed, unexplained desire to rip the head off of the shoulders of anyone that dares to cross your path.

    Any takers?

    ****************************

    For the most part I've been happy with God's choice of my sex but now I'm rethinking my reincarnation preference.  Guys, you have lucked out yet again.  You've missed out on the pleasures of child birth, cramps, bloating, difficult to achieve orgasms, and now hot flashes.  Some women equate this strange phenomenon to being cooked in an oven but I say the heat comes from within; much like being cooked in a microwave on the popcorn setting.  Can you believe we had to fight for the opportunity to vote less than a century ago yet we get more than our share of the nasty stuff that life has to offer?  Shocking.  Just shocking. 

  • JustSaying
    JustSaying Member Posts: 5
    edited May 2009

    I have been on Effexor for about a month and a half. I started Tamoxifen about 3 months ago, and was having terrible night sweats. The Effexor has eliminated my night sweats. I'm up to 150mg now, worked my way slowly up to that level. It has made me feel a lot better emotionally. I had a Lupron shot a month ago to shut down my ovaries, and really can't say I noticed any side effects from it, likely due to already being on the Effexor. I have lost weight since being on the Effexor. This may be due to the norephedrine which is a stimulant. I am very active physically, but have always been. I don't feel as hungry and can't eat as much as I normally do.

  • jai1950
    jai1950 Member Posts: 5
    edited May 2009

    Hi all I have just started on Tamoxifen this week.  So far no side effects that I have noticed.  Not been on long enough to know about the weight changes.  I sure don't need any more weight gains.  I would love to join the Tamox train.  Nice to know there is others out there going through the same thing.  Judy

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

    jai1950, ReneeS, and Justsaying,

    Welcome to the Tamoxitrain!  Yes, it IS getting a little crowded in here!!  Glad they've got A/C!!

    Have a great Memorial Day weekend, everyone!!

    Hugs

    Harley

  • karol61
    karol61 Member Posts: 36
    edited May 2009

    Hello All,

    May 15, had my onc checkup and I'm NED!! I have been on Tamox since 7/07, the side effects have lessened!!!Hardly have any hot flashes now.

    Unrelated to Tamox is swelling and discomfort in  the lumpectomy side,under my arm, down my arm. Tuesday I'm going to see a physical therapist trained in lymphedema. 

    Hope everyone is enjoying Spring!!

    Karol 

  • fairy49
    fairy49 Member Posts: 536
    edited May 2009

    Yay Karol!!!! congrats, you must be so happy!

    Hugs!

    Lorraine

  • Rachel_BC
    Rachel_BC Member Posts: 679
    edited May 2009

    I am jumpin on the train here... I don't start Tamox until September but good to learn :)

    I was going to take it in the morning, but now you have me wondering about the evening... 

  • Believe1
    Believe1 Member Posts: 31
    edited May 2009

    I hope someone can answer my question regarding Tamoxifen.

    I have been on it for a month now, and everything is has been fine.  I have had no hot flashes or night sweats or anything else for that matter, and was actually starting to wonder if this pill was working properly.  Now I am totally bleeding........on my period and its a big one!  I thought that being on Tamoxifen was suppose to block ALL the estrogen, so being you dont have periods??  I am really confused, can anyone help me with this one??

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