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Bottle o Tamoxifen

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Comments

  • KEW
    KEW Member Posts: 450
    edited June 2009

    I've noticed being dizzy more often too, I thought it was my low bp usually 90/60, but I never had to grab onto things before...I wonder if it is the Tamoxifen?

    karen

  • Sydney6
    Sydney6 Member Posts: 40
    edited June 2009

    Karen - How long have you been on the Tamox?  I've been on it a little over a month and for the first 2 weeks I was taking it in the morning and was extremely dizzy.  I then started taking it at about 8p.m. and the dizziness seems to have stopped.

    Sue

  • Sige
    Sige Member Posts: 334
    edited June 2009

    Hi all...I haven't posted on this thread before, but have read some of it - sorry if this is a repeat question!

    I've been on tamox for 3 years now and I have always had what I call "tamox flu days" where I'm achy, feverish and yucky-feeling.  Has anyone had this?  I had what I thought was the hummer of all flus yesterday and today - GONE.  I thought for sure I had the flu but now I'm thinking it was just the tamox flu.  Weird.

    Peggy

  • YearoftheHat
    YearoftheHat Member Posts: 66
    edited June 2009

    I'll be starting Taxoxifen later this month.  My doctor said that weight gain is a rare side effect, and I suppose that could be true, but I can see so many of you are unable to lose weight.  That's not good news!  I've been in the surgery/chemo mill for the last seven months and I am really overweight.  I need to lose the weight, if not for my sense of well-being then at least for my health! 

    I am trying so hard to be on-board about this but in my heart I do not want to take this medicine.  I have so many awful things pertaining to quality of life.  I just want to be like I was before cancer - lol.  I am going to try to keep an open mind and wait to see how it effects me.

    I'm glad I found this discussion board. 

  • HelenaJ
    HelenaJ Member Posts: 304
    edited June 2009

    Hi Yearof the Hat, I have been taking Tamoxifen for about 3 months now (with a break in between) and haven't put on any weight you will be pleased to hear.  I do notice however, as many of the women have posted, a shift as to the distribution of my weight, more so around the belly.  Whether this has to do with the "menopause" type effects I'm not sure, but I think I just have a different lifestyle now.  I am more prone to have a little treat or an extra sugar in my tea, just because "I bloody deserve" it.  I am also a runner and find that I don't run as fast as I used to - perhaps our level of energy drops.  I'm sure yours has since chemo.

    Please keep an open mind - I stopped taking it for 2 weeks and am now back on it because I think it's merits are worth a try.  I don't want to take it but know I have to.

    Good luck and let us know how you are getting on when you jump aboard the Tamoxifen train.

    soft hugs

    Helena

  • juli0212
    juli0212 Member Posts: 801
    edited June 2009

    I also have rib pain in the side where I had radiation treatments (35 of them)...not bad, only when I press on the ribs.   Have LOTS of 'stomach-anxiety' though...and have NO clue if it's the chemo-induced menopause at age 47 or tamoxifen...also hate the water weight gain, no matter what I do, or NOT eat (or exercise when I can)...nothing gets rid of it...I'm down right now...got some xanax for anxiety (anxious stomach only, really not emotionally, never have been?)...tamoxifen until maybe August, then an AI, as I'll be POST-menopausal at that time, at age 50, when my Mom started, lol.   Ah well, the things we have to do to get thru, right?!!

    ALL my best to you all...tamox has had VERY little side effects, other than my huge gut, that I never had...I look preggers...ugh...

  • Rachel_BC
    Rachel_BC Member Posts: 679
    edited June 2009

    Hey Helena, Queen of the Desert... I was waiting to hear how you fared with your "time off" Tamoxifen, thank you for posting.  Maybe 2 weeks will do the trick?

    Sige, I just have to say I love your hair! :D

    I have not started my Tamoxifen yet, that will be September, but I have been watching the other gals on this thread and another one.  They turned me on to some great data about studies (one is Susan Love with 140 women, the other was a huge study of 13,000 women) where half were on placebo and half were on Tamoxifen.  The results were that yes, there are symptoms- but the placebo group had the same symptoms!  Except the hot flashes and vaginal discharge.  I post the links a lot, so to avoid boring everyone, PM me if you want them, I will send you the links :)

    Another thing I learned from women posting on another Tamoxifen thread is that they said they only post when they are having problems.  Then I noticed a lot of them stopped posting!  And some are coming back just to post that they are not having any problems, to make it more even.

    So it's reasonable to hope for the best, and more than that, if you DO have the hot flashes, it means even lower recurrence rates.  For me, almost 50, that means when I am sitting with my gal pals and we're all having hot flashes, I should be the only one going YIPPIEEE!!!

    The other thing I can offer is that since I haven't started Tamoxifen yet, my "symptoms" are my own.  I had a little vertigo yesterday because I have a lot of congestion in my head and my periods nearly here... or should be... permimenopause, fun fun fun not.  It's humid outside and I have the AC running but when I was fixing the kid's dinner I became sweaty like crazy.

    I wrote out a list of my "symptoms" before I started RADS so I could sort out what was from treatment and what was usual me.  I had to take care not to dismiss things, because that's usual, right? Before cancer, I didn't think every pain or problem was cancer related so it was easy to dismiss things I now watch carefully.

    On the other hand, everything everyone posts here as a Tamoxifen-related symptom I take as 100% valid.  They are checking themselves too.

  • LeggyJ
    LeggyJ Member Posts: 195
    edited June 2009

    bluegems, thanks so much for your post!!!  I feel a lot better now!  I'm told my Onc. is really good, but I think he's bedside manner, is weak.

  • Rachel_BC
    Rachel_BC Member Posts: 679
    edited June 2009

    Leggy- you are totally correct about your ONC's bedside manner!  Jeeash!

  • HelenaJ
    HelenaJ Member Posts: 304
    edited June 2009

    Hey Rachel - great photo and yes back on board the train - 3 days back now and I have to say I feel fantastic - happy, energetic and all the normal stuff - I am going to be positive that it will be OK this time.  I PM'd a lovely lady from these forums who takes half a tablet in the morning and half at nite so I am giving that a try - so far so good.  I am also still awaiting my CYPD26 test results which are due in a few days. 

    Juli - yes lots of stomach anxiety - I definitely think it is a tamoxifen SE.

    soft hugs

    Helena

  • Joyce-PA
    Joyce-PA Member Posts: 53
    edited June 2009

    I have a question.  I am 57 and finally postmenapausal and have been on tamoxifen for 18 months with a few se, dizziness, hot flashes, etc.  How do you figure out if the hot flashes/night sweats are from tamoxifen working or just being in menopause.

  • LeggyJ
    LeggyJ Member Posts: 195
    edited June 2009

    Hi Joyce,

    I'm 52 and wasn't in menopause, long enough, so was treated as premenopausal, with tamoxifen. I'll I can say is the hotflashes, are far worse now!! At first, I thought oh I can handle it, I've been there, done that, but this sucks. 

  • Mary22
    Mary22 Member Posts: 428
    edited June 2009

    I have not been back to my rad onc, I was waiting for school to be out. I do have an appt w/ my med onc onJune 22, I will ask her about my rib pain.

    Peggy, Yes I do get days were I feel yucky, not sure if it is tamoxifen, or just rads fatigue. I also just got over a bad sinus infection.

    My children's Pediatrician said that before the children get their  booster shots, that I need to have a blood test done to check my immune system.  So it could also be low immune system trying to fight off infection.

  • Rachel_BC
    Rachel_BC Member Posts: 679
    edited June 2009

    Helena Priscilla- Thank you! great new picture for you too!  Sooooo happy you are feeling great again!!! On the half tablets- are you gonna tell your ONC?

    Leggy- that does suck but ... for one thing the stats are that if you are having lots'o'hot flashes your recurrence rate is even lower :):):) ... and for another, isn't there something the onc can prescribe to lessen the hot flashes?  Effexor?  Now that you know it's working... time to turn down the heat!

  • jillyG
    jillyG Member Posts: 21
    edited June 2009

    I gave experienced a lot of weight gain on Tamox, I am coming up to 3 months on it and I've gained 20 lbs....went from 120lbs to 140 lbs.  It seems to mostly be in my stomach and backside.  I went on weight watchers a few years back after I was done having kids and had no problem maintaining my goal weight at all for about 3 years.....now suddenly a rapid weight gain, 20lbs in only about 3 months.  I can only attribute it to Tamoxifen.....but of course, I'd rather take it and be fatter than the alternative :)

  • HelenaJ
    HelenaJ Member Posts: 304
    edited June 2009

    JillyG - most women who have weight gain have complained it is around the waist - I haven't gained any weight (on the scales that is) but my energy levels have dropped considerably so most of my muscle (I am a runner) has turned to fat - yep, you guessed it - around my middle - it is winter over here in Oz and I have the muffin top over the jeans at the moment.  Sigh.  It was the 3 month time period I experienced the worst lethargy on Tamoxifen - I've had a 2 week break and now back on board and so far feel fantastic.  You have just done chemo too so maybe the body is just storing up on all the good stuff after such a beating. Hopefully things will even out for you.

    Rachel, I discussed all my options with my Onc a few weeks ago and I am currently waiting on my CYPD26 test results.  He was convinced that splitting my pill wasn't going to change anything but he also didn't say not to do it.  We are really just biding time before my results come in - better to be on it than not.  I have also resumed taking the tablet at a different time in my cycle - he wasn't convinced at all about that one!!!!!!!!!!!

    soft hugs

    Helena

  • Rachel_BC
    Rachel_BC Member Posts: 679
    edited June 2009

    Helena- oh I am an idiot.  I thought you were just taking half the dose instead of taking a whole dose in two halves.

    doh! 

  • HelenaJ
    HelenaJ Member Posts: 304
    edited June 2009

    .now way - I'm on the full dose baby ... what time is it over there Rachel .. are you burning the midnight oil again?

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

    JillyG, exactly my experience with Tamox.  But as you stated, better fatter than the alternative!

  • Rachel_BC
    Rachel_BC Member Posts: 679
    edited June 2009

    Helena... clearly I musta been burning somethin', (and inhaling)... 

    Jilly and Linda and Helena- seeing you women who are clearly pretty and skinny,  dealing with the weight gain with your correct perspective and positive attitude to me, a woman who has been chubby most of my life, is incredibly empowering .  I hope you know how really beautiful you are, inside and out.  It shows.

    Not that I'd wish it on you, and not that I am ready to give up fighting the battle of the bulge... or trying to help. In that effort, the study that I am always banging on, the 13K women half on placebo, half on Tamox who all had the same side effects except for the hot flashes and vag discharge, (Tamoxifen for Prevention of Breast Cancer- Report of the National Surgical Adjuvant Breast and Bowel Project P-1 Study)

    had a pool of women from age 35-59. I am thinking maybe Jilly's weight gain might be the kind women get as they hit that age when our metabolisms change? Again, not that I know an answer for that, as old fart me at 49 hasn't mastered it.

    For the increased waist, I'm hoping pilates will make a dent- literally.  My GP said something about it being "water weight".  I asked how to deal with water weight, and what I got was drink more water to force it out and avoid salt.   Any use for that?  

    Again, thank you skinny gals who have your head in the right place.  

  • jillyG
    jillyG Member Posts: 21
    edited June 2009

    I think it could be that my metabolism is slowing down as well.  I'll be 34 in the fall, not old, but just at that age where things really slow down, so it could be a combination of things.  I'll have to drink more water and see if it helps.  With no hair and one boob, I don't need added weight when I look in the mirror......my poor ego can't take anymore! lol.  Oh well, at least I'm a survivor and that's all that matters. 

  • Joyce-PA
    Joyce-PA Member Posts: 53
    edited June 2009

    I am 57, thin and in good shape and I also have had a shift in weight to my middle.  Questioned the dr. whether it was tamoxifen and was told it is called "menopause middle" -- nothing really to do w/tam.  It is just that metabolism is slowing up and I should continue exercising to maintain my current weight. 

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

    Rachel, thank you for your kind words.    49 is NOT old, please, I only have 6 more years to go and I will be there! 

    My metabolism did slow down a bit in my mid 30's. I was always able to maintain a good, healthy weight. I don't buy the doctors who say it's not the tamox, it menopause.  I have 3 older sisters and none have gone through menopause.  I think the tamox is starving our bodies of the estrogen we need and causing us to gain weight around the middle.

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

    Linda,

    You are so right...  we NEED the estrogen, yet, it's our enemy...  It is causing the weight gain around our midsections.  I feel like a beached whale most days...

    My thyroid is out of whack again, so I just had an increase to my thyroid hormone dose...  I'm so tired ALL THE TIME!! 

    I have an onc appt. tomorrow, and I don't know why... he never does anything anyway.  It's a waste of time!!  But I have LOTS of questions.  Only problem is that I know I won't get any answers...

    Hope everyone is doing well. 

    Harley

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

    Harley, I had my onc appointment on Monday and you are so right, it's a waste of time!!  I think they just want our copays!

    From your mushy in the middle friend,

    Linda

  • rgiuff
    rgiuff Member Posts: 339
    edited June 2009

    Talking about weight gain.  Before all this breast cancer stuff, I was up to about 152 lbs., had slightly elevated cholesterol and the other lipid levels were a little out of whack too,  Then in January of 2008 started working out regularly, found out about the breast cancer in April.  By that time I had gotten down to low 140s weight. 

    After starting tamoxifen in November, within a few months I noticed a weight gain of about 6-7 pounds over the winter, even though I was still working out.  And I don't think it was in the belly but more in the butt and thigh area, which is where I've always had a little extra. 

    Since then, I've cut down more on the bad things, slightly increased the exercise, and for past 2 months have had nonstop hot flashes, so now my weight is back down to low 140s again. 

    This past January, my cholesterol and all the lipids were all at perfect numbers, so don't know whether that was from all my efforts or from the tamoxifen that I had been on for 2 months at the time the labs were drawn, or maybe a combination of both.

  • Rachel_BC
    Rachel_BC Member Posts: 679
    edited June 2009

    Harley, you nailed it!  Well said! 

  • LeggyJ
    LeggyJ Member Posts: 195
    edited June 2009

    My Onc. said he would look into, changing me from Celexa to Effexor, for the hot flashes, but I haven't heard from him.  No surprise there...Good to know, that the hot flashes are an indicator of a lesser recurrance rate, thanks RachelBC, I hadn't heard that.

    Regarding the muffin top, I had to laugh!!!  I lost so much weight, during chemo. and still have really skinny arms, and legs, but that muffin top, just won't go away, but it's not as bad, as pre-chemo.  The high ER/PR, really had me just plain fat around the middle.  Lovely! I've been able to maintain, the same weight, since I start Tamoxifen in Dec. 08, but within the last week, it's creeping up.  Stress from a my first mammo. since DX and first visit with the Onc. didn't help.

  • eadsla
    eadsla Member Posts: 26
    edited June 2009

    Hey guys.  I have a question about when your period came back.  I'm having my first one since February.  It's more like spotting, but it's been going on for over a week.  I suppose it isn't out of the ordinary for the first ones to be a bit off, since everything is a bit off after chemo, but I was wondering what others may have experienced.  Also, I can't seem to stop eating, which isn't all that great since I'm due to start Tamox at the the end of the month.  Nothing like knowing you're adding fuel to the belly fat fire beforehand, right?

    Catherine

  • Rachel_BC
    Rachel_BC Member Posts: 679
    edited June 2009

    Leggy- just so ya know I ain't peeing in the wind and telling you it's raining:

    Tamoxifen-induced hot flashes cut breast cancer recurrence

    Hot Flashes a Good Thing for Women With Breast Cancer

    Hot Flashes, Night Sweats a Good Sign for Breast Cancer Patients 

    And the original presentation from ASCO:

    http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=47&abstractID=31900

    :):):)  It really is raining :) 

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