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Bottle o Tamoxifen

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Comments

  • jo1955
    jo1955 Member Posts: 7,545
    edited April 2013

     new2bc - Mine is made by Teva and I have had very few SEs.  Been on T since Jan 2011.

    Ed2012 - Before you use any kind of topical estrogen creams - ask your MO first.  He/she may have other options that would work for you.

  • ED2012
    ED2012 Member Posts: 12
    edited April 2013

    new2bc - I think the manufacturer of the T I am on is Watson laboratories....the pill has a call out of WPI on it.  I am going to double check on this...as I could not find it listed on my 90 day supply bottle that I receive from my insurance backed pharmacy.

  • karabee
    karabee Member Posts: 1
    edited April 2013

    Is insomnia a common SE of tamoxifen? I just started tamox a few days ago and haven't slept since. I take it at night then go to bed. Would switching to taking it in AM help alleviate this issue? I would appreciate feedback from those on it already and how they dealt with the no sleep. I almost feel agitated all night.

  • Lacey12
    Lacey12 Member Posts: 2,895
    edited April 2013

    Karabee, my main concern since taking T fourteen months ago has been sleep difficulty, which I had never before experienced. I also took it at nite for many months, then switched to AM, which I think did help. Then I took Melatonin for a while....helped get me to sleep, but I was in more of a twilight sleep state all night. I took a break from the Tamox last month and started to sleep much better. I am now back to taking Tamox and my sleep is not as good as it was when off the Tamox, but certainly better than it was before my hiatus from the drug. I think it might be a good idea to try taking it in the morning, and see how that goes.

    Good luck!

  • bgirl
    bgirl Member Posts: 435
    edited April 2013

    After a couple of weeks your blood levels become constant, Tami takes time to get out of your system, so time of day may help if it upsets your stomach or something, but found it not very helpful for insomnia.  As you can see from my time of posting, that yes insomnia is definitely an SE.  Sleep very little, and when I do, that very light, aware sleep most of the time.

    Sort of get used to it over time, 16 months on T, but it is very hard.  Most sleep aids not meant for the long term.  I use Restoril (prescription) if I have slept very little for several nights in a row, helps a bit to restore some sanity.  If on edge I occasionally take an Ativan to relax.  Watch over the counter sleep aids as most have the active ingredient in benadryl in them and this can interfere with the metabolization of T in the long run.

  • unowhoandwhy
    unowhoandwhy Member Posts: 54
    edited April 2013

    I sleep pretty well now that I take Tamox in the morning and take melatonin before bed. I miss my Benadryl, though, nothing else works like it!

  • swim_girl
    swim_girl Member Posts: 10
    edited April 2013

    Karabee, insomnia has been one of my biggest issues with Tamoxifen, although it comes and goes. Some times I wake up several times a night when I'm having hot flashes, but those also come and go. I've been going to acupuncture, which helps some. I have also gotten much stricter about my bedtime routine--limiting alcohol and screen time before bed. If I exercise on regular basis, that also seems to help me settle down at bedtime. 

  • new2bc
    new2bc Member Posts: 254
    edited April 2013

    Hi everyone,

    For people who have insomnia as a side effect , which brand of Tamoxifen are you taking? If people answer this question, may be we can narrow down if this side effect is only related to a certain manufacturer. This is very important to know.

  • mstrouble16
    mstrouble16 Member Posts: 177
    edited April 2013

    Mine is Mylan brand Tamoxifen

  • bgirl
    bgirl Member Posts: 435
    edited April 2013

    I have been on 3 different brands ... whatever I can fill sometimes.  Mylan, Teva, and Novopharm(canadian only I think).  Dr. says it is from estrogen imbalance ... lots of women going through menopause have issues with sleep.  Because I was younger (years from meno) the dr. said the sudden shift can be more disruptive.  Almost everyone in my 40 something support group has the same issue.   And the good news is I should finish tami, just in time to really go through menopause ... so looking forward to that.   The real good news is after 16 months I am starting to get used to being sleep deprived ... part of the new normal.   The leg cramps which are only getting worse I could do without.

  • jo1955
    jo1955 Member Posts: 7,545
    edited April 2013

    I get the Teva brand.  Been on Tami for 2 years 3 months.  Went through menopause 5 years ago and I have issues with insomnia big time.  Most nights I manage to get 5 - 6 hours of sleep.  I get up several times throughout the night to go to the bathroom.  I am used to the sleep deprivation but really hate it. 

  • heartnsoul76
    heartnsoul76 Member Posts: 1,204
    edited April 2013

    Ohh, I had a terrible leg cramp a few days ago!  I was pointing my foot to put it into a tennis shoe, and my calf locked up.  My entire calf from the ankle to the bottom of my knee was locked in a ballerina pose, hard as a rock and still tightening for about 20 seconds.  Made me scream in pain.  Just as quickly as it came, it quit but my calf hurt for days afterwards.  Usually it's my foot that locks up so hard it feels like the muscles are breaking the bones - ugh. Either one is a nightmare.  But this is the first cramp I've had in about 4 months, so I guess that's less frequent than in the beginning.

    Still, I think the Tamoxifen SEs are less than an AI.  And everyone's SEs are different.  I think other than the leg cramps that's about it for me.

    I get the Mylan brand - it's kind of hard to find but I think it has less SEs for me.

    Anyway, hang in there. It's better than cancer.

  • Doragirl34
    Doragirl34 Member Posts: 38
    edited April 2013

    Teva is my brand. And I didn't know leg cramps were another side effect. That's what woke me up tonight. They are so painful. Will they last the whole time I'm on tamoxifen?

  • justagirl
    justagirl Member Posts: 633
    edited April 2013

    Dora: never know with these drugs. I got leg cramps while sleeping in one or both calf's of my legs that I woke up streaming in the middle of the night and they were like in a spasm. My husband rubbed and rubbed them and said try and move them and it hurt so bad. After a couple of incidents, and yes, my calf muscles hurt for days afterward like I had run a marathon on my toes I starting taking a low daily dose of magnesium. It worked.

  • bgirl
    bgirl Member Posts: 435
    edited April 2013

    My insomnia is 1 1/2 hrs on bad night, 3-4 on a good night,  and occasionally I get 5-6 on a great night.  Some cycling of hormone imbalance as still premeno.  I know what the Tami is supposed to do, but I often wonder how healthy it is to sleep so little.  They say eating well and getting enough sleep is important, so most days I am confused.

  • unowhoandwhy
    unowhoandwhy Member Posts: 54
    edited April 2013

    Have you tried taking Tamox in the morning and then melatonin before bed? It made all the difference for me and I am back to 7-9 hours a night again!

  • GirlPowerDebbie
    GirlPowerDebbie Member Posts: 77
    edited April 2013

    When I started tami I was taking it at bedtime.  Switched to mornings and got a slight improvement on the insomnia.  But I ended up getting an Ambien rx and it changed my life, I am getting a solid 6 hours of sleep now and I am not groggy when I wake up.

    Leg cramps, argh!  Sometimes I get them so bad they go into my foot and the tendon draws up ... nothing helps but massaging and walking it out.  My RO suggested B6, which seems to help, and I have heard dehydration or potassium shortage can help cause it too.  I get them sometimes at night, but many times during the day too. 

  • heartnsoul76
    heartnsoul76 Member Posts: 1,204
    edited April 2013

    I didn't know so many of us had leg cramps - they're terrible!  I have some magnesium in my calcium supplement, but I think I will add a little more.  I've heard that helps muscle cramps and supposed help with sleep, too.

    The 4 or 5 mg Melatonin doesn't help me sleep, so I might try doubling that.

  • chabba
    chabba Member Posts: 3,600
    edited April 2013

    Potassium Gluconate is what I take for leg and foot cramps.  2 or 3 times a week keeps me cramp free.

  • heartnsoul76
    heartnsoul76 Member Posts: 1,204
    edited April 2013

    Thanks, chabba! I'm going to try that. Sometimes my blood pressure goes up, but I don't think taking such a small amount would cause a problem. Maybe if I quit being such a hyper maniac... Wink

  • mumito
    mumito Member Posts: 2,007
    edited April 2013

    Hi ladies I would like your input.T his is my 5 th year on Tamoxifen .I just got lab results back from my annual Pap test that showed Atypical cells.My gyno.. Is aware of my cancer and med history.They booked me in for another pap in 6 months to keep an eye on things. 6 months seems like an awful long time.I had a biopsy just over a year ago which was fine.Am I being over anxious?

  • jo1955
    jo1955 Member Posts: 7,545
    edited April 2013

    mumito.  I have been on T since Jan 2011 and have have multiple uterine issues.  Two hysteroscopies and 2 D&Cs.  Never had these kind of issues before.  We are always going to be overanxious no matter what.  I'm not sure I would go 6 months.  I would geel better if it was scheduled for 3 months from now.  Talk to your gyno and let him/her know your concerns and see if they would do the shorter time.  Please keep us posted.

  • violet_1
    violet_1 Member Posts: 335
    edited April 2013

    Hi...I'm a Newbie as far as posting, but have been reading this fabulous forum for months.

    I'm going to see a breast oncologist for a 2nd opinion about taking Tamoxifen (& ovary suppression/hysterectomy cuz I also have huge bleeding/period issues/fibroids that have been kept in check w/ the BC pill, which they immed. took me off of...ACK! Surprised

    ...my oncologist breast surgeon who did my bilateral MX feels there's only a small % that Tamoxifen would benefit me compared to the risks...I did NOT need/have radiation or chemo...and my tumors were 0.5 cm IDC on both sides/well differentiated...no lymph nodes affected...I'm premenopausal...47 years old...

    Has anyone decided to still take T. even if they had a MX and had low grade/stage breast cancer? Also, I have to decide WHAT to do about my hideous periods/AND BC...My OB/GYN suggested the Minera IUD to try 1st, but I thought that was a no-no cuz of the hormones in it--even if small dose...? PLUS, my goodness, I've read about all of the LAWSUITS, etc...don't think I want to try the Minera...I know U. ablation could help...but not the bleeding from the fibroids...(I'm bleeding from both, but only when i have my period).

    Meantime, I had an endometrial biopsy yesterday--OUCHIE! YellAnd, in general, all things seem to be pointing to me needing a hysterectomy, as I have so many issues.

    Can anyone please share your thoughts/experience with the above? Sorry if too many ?'s...

    Violet_1

  • bgirl
    bgirl Member Posts: 435
    edited April 2013

    I had an ablation in Dec. ... been happy with it ... not quite ready for the hyster route as they wanted to take it all and it would have meant surgical menopause.

    My MO and I had quite the discussion about the benefits of tami this week.  As he says it helps SOME women, but hard to tell who that is ... all statistics are averages.  Tami does 2 things ... one decreases risk of contralateral occurence by about 1/2 (but if you had a bmx, not as big a concern) and two risk of distant recurrence(mets) ... bit of a crap shoot, especially with smaller tumours.

    I can see not doing tami, but adding in more hormones I think would be a bigger risk.   But each of us has to weigh the risk/benefit of any treatment.  It is all very personal .. make sure you ask the questions you need to be comfortable whatever you decide. Good luck.

  • mumito
    mumito Member Posts: 2,007
    edited April 2013

    Thanks Jo I will go with a 3 month option if he agrees.I don't want to worry all summer.

  • Jennt28
    Jennt28 Member Posts: 1,095
    edited April 2013

    Good place to start would be to get the Tamoxifen PredictAR test to see if your body will efficiently process Tamoxifen? It's a simple blood test...



    Jenn

  • megamunch3
    megamunch3 Member Posts: 2
    edited April 2013

    Hi! I have heard that atypical cells aren't in themselves bad, but in time they have a higher incidence of turning "bad"- I had a similar thing over 15 yrs ago, way before my breast cancer. I had a cryosurgery after 2 consecutive "atypical" pap smears ( a year apart if I remember correctly)  to freeze out any "bad" cells, which showed up in . I have been clear ever since. I wouldn't worry, unless you experience some other kind of weirdness (pain, bloating, etc) that warrants possible checking. Isn't it hard to be vigilant and yet not worry obsessively? I can't seem to find the balance. 

  • jo1955
    jo1955 Member Posts: 7,545
    edited April 2013

    Welcome Violet.  I can relate about the fibroids, heavy bleeding and taking hormones to keep the everything in check.  I went through that as well at one time.  I took hormones for many, many years.  My GYN put me through menopause at age 52 (with meds) and then started me on HRT.  Long story short, after 2 1/2 years of HRT - breast cancer.  I have been on T since Jan 2011 and have had 2 hysteroscopies (biopsies) and 2 D&Cs.  So, this year I am going to push for a hysterectomy and ovary removal.  The decision to take T is a very individual choice.  More many, the thought is to do everything possible to prevent an recurrance and/or new primary. It is all a crap shoot taking T or not. Yes, there are side effects and they will vary for each individual. There are threads for "Natural" girls - those would prefer to treat their BC with natural or alternative methods.  You may want to check those out.  Most oncologists will push you to take T.  It is tottally your choice.   Best wishes.

  • violet_1
    violet_1 Member Posts: 335
    edited April 2013

    Jo: thanks for the info.

    Jenn: Never heard of the Tamox. predictor test...thanks...

    bgirl: I've consider an ablation...but that would only help my bleeding from lining & not bleeding from fibroids, right?

    Thanks All,

    violet_1

  • JustmeAlicia
    JustmeAlicia Member Posts: 629
    edited April 2013

    Violet, I had a hysterectomy on 3/1.  My uteurus was thick and bulky from the tamoxifen, and I had a large complex cyst 2.5 inches on my ovary that was causing me pain.  I had a laproscopic hystie leaving just the cervix as they said it helps anchor your stuff up there a bit.  I feel it is a few less body parts to worry about getting cancer.  The cyst was no cancer cells so all was good.  I am now almost 2 months out and starting to feel more like myself again.  I do notice a difference with the NO estrogen at all now but am adjusting.  My dr. gave me vagifem which is a low dose estrogen that goes in the vagina.  It makes a world of difference.  My oncologist said it was okay.  I couldn't live with the discomfort down there, and my husband is 46 and still wants me for some reason so I had to make it more comfortable for ME!  Too much info huh?  Sorry girls ! 

    Glad to see you all, so sorry for those of you who have unfortunately progressed in your journey of stages.  BUT fight like a mother ~ and never give up.  

    Have a good day day!

    :)
    Alicia

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