Start Tamoxifen-April/May 2011

Options
145791012

Comments

  • sundermom
    sundermom Member Posts: 463
    edited October 2011

    I didn't start Tammi until July, but I can totally relate to the constant feeling of being irritated. I hate that I feel this way. Chemo sent me straight into menopause at 37 without passing go! I found a**kicking exercise to be a nice release for all of the mean. My poor DH and kiddos :(

  • wenweb
    wenweb Member Posts: 1,107
    edited October 2011

    Has anyone suffered weight loss since starting Tamoxifen?

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

    No weight loss wenweb, no gain either so I'll take it. :)

  • GirlFriday
    GirlFriday Member Posts: 461
    edited October 2011

    TonLee: You're right, it's probably not funny, but I'm laughing anyway.  Sorry you had bugs in your bed!  I probably shouldn't admit this but I've been dreaming very vibrantly  since I started on T...and a few weeks ago I kept having a dream I got crabs...litterally they were driving me crazy, I was all itchy on my legs, on my stomach...I kept waking up...I even got up and put allow on, and then still fell asleep to the same dream.  Maybe we got some LSD with our T?

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

    GF,

    Buwhahaha.

    Best. Post. Ever.

    I'm actually glad I'm not the only one who feels itchy!!  I thought it might be a drug interaction between Tamoxifen and Niaspan.  lol

    Another thing...I'd probably miss my memory if I could remember it!  My memory is shot and I'm doing all sorts of things to try and keep it spry, but some days I can't even think ... what was I saying??  lol

    It really is that bad.  I have to repeat what I'm leaving a room to get over and over until I get it, or between one room and the next I'm clueless!

    It's why I forgot my Tamoxifen several times since starting in April....

  • wenweb
    wenweb Member Posts: 1,107
    edited October 2011

    My memory is shot too.  Last week I lost a thought in mid-sentence 4 times.  This week, I forgot that I had already mended a hole in a pair of my husbands yoga pants while I was pointing out another one. (I guess that's why they were at Marshall's).  It's a little scary.

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

    I wonder when we stop Tamoxifen if our brains will come back?

  • GirlFriday
    GirlFriday Member Posts: 461
    edited October 2011

    i wonder the same thing.  I've got a new job in cubicle land, and I write notes all the time.  I'm suffering from sever CRS...(Can't Remember Sh!t)  Every time I've forgotten my Tamoxifen I've felt physically ill...I wonder how long it takes for the detox to occur, and when my memory will come back!

    I was just saying this morning how I thought should get one of those daily pill things...I take about 7 supplements and my Tamoxifen every morning and I spend a lot of time dolling them out to me and my man (minus the Tamoxifen)  I'm not even 40!  Cheese and Rice!

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

    I just turned 43 GF and the memory thing is probably the SE which impacts my daily life the most.  I'm kinda wondering if the refill of T I got last week is really Tamoxifen.  My hot flashes have almost stopped completely.  That worries me a little bit.  Even though there is no merit to it, at one time Drs used hot flashes as a sort of verification of efficacy.

    Are we supposed to have hot flashes for 5 years?

    As for withdrawal.  I feel it within a few hours of a missed dose.  I just have to train myself to recognize the symptoms!

  • Omaz
    Omaz Member Posts: 5,497
    edited October 2011
    TonLee - I had one of thos killer cramps in my foot/calf this morning - whoo!
  • GirlFriday
    GirlFriday Member Posts: 461
    edited October 2011

    From what I gathered the SE's will ebb and flow,and apparently new ones can pop up at any time.  I feel like my warm flashes are subsiding, but then again, it's cooler now, so maybe I'm just not as uncomfortable.  I keep waiting for the need to pee to pass...and that just hasn't happened.  Getting up four times a night just isn't fun anymore.  It makes me want to bargain with Tamoxifen and say...Okay if you take away my constant peeing you can double my warm flashes.

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

    Ah Omaz,

    Aren't they fun??  OUCH!

    GF,

    The peeing has slowed down for me.  I really limit the water I drink before bed which seems to help.  But I'm so thirsty all the time..it's a trick...

  • baseballmom
    baseballmom Member Posts: 126
    edited October 2011

    Hi, everyone.  Started tamoxifen 4 weeks ago and I'm not sure if I have SEs or not.  How long before you all noticed anything different?  I've definitely been loosing weight which surprised me.  Not sure about being irritable since I feel it every once in a while, doesn't seem too unusual.

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

    Base,

    The hot flashes started right away.  The joint pain about 8-12 weeks in, and the cranky old lady (for me) got really bad about 3 months after starting....

  • baseballmom
    baseballmom Member Posts: 126
    edited October 2011

    Ok, then I do possibly have something else to look forward to!  Joy!

  • kathyob
    kathyob Member Posts: 36
    edited October 2011

    Hi everyone...I have been on Tamoxifen since the summer and your posts have been a Godsend! It is comforting reading that the same odd things are happening to everyone else, although I am not happy that you all are going through it as well. The side effects haven't been bad, but my stomach seems to have suffered the most. I am also on Effexor, so I don't know what's what. Sometimes I feel sick to my stomach, or I just simply lose my appetite, which for me is very very unusual:) I have noticed a tiredness that is sometimes hard to shake, and of course the warm flashes. The stomach stuff though...I am consitipated a lot which I think adds to the nausea. And wow can I be thirsty sometimes! Like I'm desperate for water. Especially after a run. So glad we have this outlet because my oncologist has already told me the constipation isn't the Tammi, so I stopped there.

  • wenweb
    wenweb Member Posts: 1,107
    edited October 2011
    kathyob Everyone here knows that the oncs will say "that's not a SE from such and such a drug", we know differently because we are living in our bodies.  I don't think that one can eliminate anything "new" happening to them as being a SE from a medication.  Follow your intuition.  I am fairly certain that Tamoxifen has given me loss of appetite.
  • TonLee
    TonLee Member Posts: 2,626
    edited October 2011

    I want that loss of appetite thing!!  lol 

    Kathy, I haven't heard of T causing constipation.  But I have a natural remedy. 

    I take 400mg of magnesium citrate (important to get the citrate) every night before bed.  It is something your body needs anyway, but does two very important things:

    1.  It helps you sleep.

    2.  It keeps you regular.  Like clockwork regular if ya know what I mean.  I've never been a regular kind of girl, maybe once every three days.  I've done the Mag-Citrate since March and I am an every day girl now!

    And my stomach stays flat!!  I had no idea that all my life the bloating in my belly came from not being regular...until I was!!

    If you try it.  Let me know how it works for you.

    An entire bottle costs about $7 at Vitamin World, and I usually find 1/2 off coupons for Vitamin World in the sunday paper.

  • wenweb
    wenweb Member Posts: 1,107
    edited October 2011

    I've heard many comment about constipation on Tamoxifen.

  • Omaz
    Omaz Member Posts: 5,497
    edited October 2011
    kathob - I started tam in April and have noticed the last couple months that the thirstiness is going down.
  • pejkug3
    pejkug3 Member Posts: 902
    edited October 2011

    I've only been taking the Tamoxifen for about 6 weeks.  But I have noticed that I have very low pelvic pain/discomfort about 2 weeks after my period.  I feel pain when I cough or laugh or even go for a walk.  It lasts for about 5 days and then it's gone.  Weird.  Anyone notice low pelvic/abdominal discomfort?

  • LovesChristmas-Barb
    LovesChristmas-Barb Member Posts: 706
    edited October 2011

    I started two weeks ago and I've been having pelvic pain for the last few days off and on. My periods are so erratic that I'm not sure where I am in my cycle. I've been wondering if it was related also...

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

    I had mucho lower pelvic paini for about a month and then it went away.

    My OB Onc said I shouldn't have any periods on Tamoxifen....and if I do to make an appt so she can check things out afterward, unless there is heavy bleeding for more than 3 days, then I am to come in asap.  I wasn't perimenopausal before BC...41 and still going strong...lol

    I know women still have periods on Tamox (from reading this site, trust me, everyone on my cancer team assures me women do NOT have them on Tamox)...~sigh~

    I haven't had a cycle since last December after my 1st chemo.  AT this point I hope to never have one again.  I'm already suffering from menopause/chemopause, might as well have a benefit!

  • pejkug3
    pejkug3 Member Posts: 902
    edited October 2011
    I started the Tamoxifen on 9/1 - had a regular period on 9/28.  It was lighter than usual and lasted for only 4 days.  I had a transvag u/s on 10/3 and they saw a endometrial polyp.  I've had those in the past and the doc said that Tamoxifen could cause them as well.  I doubt the Tamoxifen caused this one in just a month though.

    The reproductive oncologist that I am seeing said to call her if my period is more frequent, less frequent or anything funky.  She prefers that I do have a period though.  If I stop having them, she was talking about hysterectomy/ooph.  I'm not sure I like that plan.  But maybe it's a good plan?

    I'm 35 and I know I'm done having kids.  But having an ooph seems like a big jump.  The reproductive onc drew labs for AMH and I came back a 1.7.  I'm not sure what that means but it's the low end of normal for a woman my age.  So maybe I'll have early menopause anyhow?
  • TonLee
    TonLee Member Posts: 2,626
    edited October 2011

    Pej,

    My Ob Onc isn't comfortable taking the ovaries unless there are problems.  But I understand it's a decision everyone must make on their own.

    I'm not a big fan of cutting out healthy tissue (which is why I didn't have a prophylactic MX)...but it seems to work for some women.

    If you stay on Tamoxifen you may indeed have an early menopause.  My Onc said some women are on Tamox longer than 5 years...if you are one of those, you could well be kicked into early menopause in your 40's...

  • tgisiner
    tgisiner Member Posts: 69
    edited October 2011

    Pejkug3, I've been taking tamox since August and I've had the same pain. I thought it might be from ovulating??? I still have periods every month. I was hoping not to. hehe. My stomach has been really bloated. I doesn't go away either. Have you had any bloating.

     Thank you

    Tammy

  • LovesChristmas-Barb
    LovesChristmas-Barb Member Posts: 706
    edited October 2011

    Tammy...I've been on only two weeks but I'm having the pain too and I think it's ovulation....and I'm bloated too. I haven't had a period  yet but I still have another week until I would be due to.

    I hope it gets better for you soon!

  • tgisiner
    tgisiner Member Posts: 69
    edited October 2011

    Barb58- I hope yours gets better too! At first, I was thinking that I was bloated because of starting my period, but it's not going away. I hope this doesn't last the entire time! Being bloated all of the time makes me feel fat! :) Yuck. I feel like I have a pot belly. haha

  • GirlFriday
    GirlFriday Member Posts: 461
    edited October 2011

    TonLee:  I'm glad mag cit is working for you, but I would seriously consider not taking it every day.  NIH has no more than 320mg bioavailable a day.  I know a woman that took Phillips Milk of Magnesia everyday for many years and she ended up with kidney failure because of the magnesium which is a salt.  I know how awful constipation is...I don't think I had a bowel movement for the entire two years I had this awful job, but still....exercise caution with the mag cit. 

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

    Girlfriday,

    There is a difference between magnesium oxide (MOM) and citrate.  My Onc said 400 mg of Mag. Citrate at bed time is perfectly acceptable, however he said MOM everyday was not.

    Thanks for the info though.  I appreciate it.

Categories