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Bottle o Tamoxifen

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Comments

  • Susie09
    Susie09 Member Posts: 225
    edited January 2010

    Hellooooooooooooooooooooooooo!

    Yep Kelly, I got the fire even though hubby was complaining ( a little ) about all of that good warm heat going up the chimney.  He is a great guy, and, usually lets me have my way.  Part of why I love him!  Kiss  But tonight I didn't even ask.  It is COLD!  I mean brrrrrrrrrrrrr!  And, it is very windy.  I think the wind is about 30 MPH!  I need this wind in the summer to keep the flying bugs off of me, but, do I get it then?  NOOOOOOOOO!  lol

    No Harley!  lol  You don't have to delete it.  I have gotten it before from others.  No biggie.  I just wanted to see the picCry and I couldn't.  I know it was cute!  Glad Bonnie got it so that I wasn't the only one or I might have wondered. 

    Glad no headache today Bonnie!  ( saying very quietly )  But, now you have foot cramps?  Do you take potassium tablets and/or eat bananas?  I think that helps some.  I have foot cramps, but, started eating a banana everyday and they are less now.  Don't you just hate those?  lol  I almost jumped out of bed one night it was so bad, but, I laid there and held my foot really hard for a few minutes and it went away.  Ok, I need to patent that.  Noone can do that without paying me a royalty.  OK!  Tongue out

    I give up on soy.  I don't know what it is in or what it is hidden in.  I am just going to do my best to avoid it.  But, I love all of the links, posts and ideas on here about it.  Very educating!

    And, hi Regina!  I am not for sure if I welcomed you to this tamoxitrain of beauties!  Join us and stay!  We are a fun group!

    Ok, it is late and I am tired, so nite all!  Have a wonderful weekend!

    Love, Susie ♥

  • Susie09
    Susie09 Member Posts: 225
    edited January 2010

    Now you knew I had to leave you with one..

    http://www.images-photography-pictures.net/funny-picture-cat-picture-ehpien-cat.jpg

  • MBCR
    MBCR Member Posts: 51
    edited January 2010

    Hi ladies! I've been on Tamoxifen for 7 months now.I was premenapausal when I started & have had only one period since I started. I had to have a D&C this week because my uterine lining was very thick, probably from the tamox per my GYNO. She also did a biopsy on the tissue. Just waiting for results. 

    As far as soy products, I see a dietician on occassion (I also have Celiac Disease), she said to becareful of any processed foods w/ soy, but soy in its natural or pure form is ok. There was an article this month on BCO about soy, BC & Chinese women.

  • CatbirdC
    CatbirdC Member Posts: 235
    edited January 2010

    Good Morning To All T-Trainers,

    Kelly ~~  Didn't realize some of CA would get that hot.  My friend loves Tucson but does complain when it gets over 100 degrees.  But then she'll tell me that her having to stay in the house then is no different that us staying in when it's freezing cold.  And she's right.

    Susie~~  I must have been confusing you because I thought I said I, too, got the "forbidden" message.  Oh well ~~ such a common thing.  And it's funny because we have 2 carriers on here and at times one will allow something to come up and the other won't.  I'll never get computers.  I think you need to start with them as a child and work your way up.

    With the foot cramps....I'll have no problem there because I love bananas.  Rather eat them than pop another pill at this point.  Be my luck it would have soy hidden in it.  Like you, I give up on that one.  Will do my best as we all do to avoid it and let it go.

    Take Care All,

    BonnieCool

  • kcl65
    kcl65 Member Posts: 741
    edited January 2010

    Good Morning Team,

    MCBR ~ Welcome! Wow a D & C after 7months, this T is crazy stuff!! Let us know how things go!

    Suzie ~ I'm so glad you got your fire and that your DH is such a sweetie to you! My hubby is wonderful and he treats me so well even when I'm being snotty, so I will just have to keep him... lol!! Wink Love the kitty!

    Bonnie ~ People who live in Arizona love it. One gal I knew told me she used to do her grocery shopping at 10 at night. She liked that as at the time her kids were young and would be in bed and her hubby would stay with them.  She got her shopping done a lot quicker, without extra stuff, no whining, and at that time of night the icecream wouldn't melt before she got it to the car... lol! But, you're right we all adapt to where we live. Laughing

    Harley ~ Very interesting... I had heard somewhere of farmers being paid not to plant things if there was an over abundance! So soy was the alternate huh? Interesting!

    Caroline ~ Hope you are having a wonderful time with your company for those dinners, and enjoy that cuddle time! :D

    Have a wonderful day everyone!

    Kelly :)

  • Susie09
    Susie09 Member Posts: 225
    edited January 2010

    Glad you liked the kitty Kelly!  We are lucky to have such great husbands.  I do count him as one of my blessings!  I have a gf in Arizona and she travels to the Midwest in the summer because it is so hot in Az.  But, she says it is great out there now.  She was even working in her flowers and I am sitting here in snow.  Darn her..lol

    Bonnie, I know.  Isn't it strange how sometimes we get that forbidden message.  I am sure that Harley's pic was cute.  I just couldn't get it.

    MBCR, I hope everything turns out ok with you.  Let us know.  Praying for you!

    Susie

  • Ainm
    Ainm Member Posts: 362
    edited January 2010

    A few years ago I had really bad chest pain on a couple of occasions. It was a combination of very severe heartburn and a really bad pain that came out between my shoulder blades - I am not exaggerating, I have a fairly good pain tolerance but this was terrible. I went to my dr and the minute I described it he said - gall stones!!  I had an endoscopy and sure enough I had gall stones and had to have my gall bladder removed.

    At 6 am this morning I experienced the exact same pain - I was on the ground with pain!!! My problem is - if my gall bladder is gone, what could have caused the pain. Could it be connected with Tamox?? I would really love to hear what you all think.

  • Harley44
    Harley44 Member Posts: 2,126
    edited January 2010

    Ainm

    I don't know what could have cause that pain...   I hope you don't have any more episodes like that.

    Susie,

    Love that pic!!  So cute!!

    Kelly

    Yes, I remember reading about that, and I thought... hmmm....   so I really believe it's a gov't conspiracy...   now we have SOY everywhere, and we can't avoid it...

    Hope everyone has a great week!!

    Harley

  • bcamnb
    bcamnb Member Posts: 334
    edited January 2010

    Hi Ainm,

    I also had my gall bladder removed so I can identify with that horrific pain! So sorry to hear it happened again. I'd be totally surprised, though, if it was related to T . Nausea yes but not that severe pain....

     I'd be contacting my surgeon and asking what could possibly have triggered it.

     *****************

    BTW dinner parties went very well. Awaiting the arrival of my most favourite grandson and his parents for dinner (mostly left overs ;-) tonight.

    C

  • Susie09
    Susie09 Member Posts: 225
    edited February 2010

    Ainm, if I were you, I would contact my surgeon.  That doesn't make sense and you shouldn't be in pain like that.  I don't think tamox could cause it.  Let us know.

    Glad you liked the pic Harley!  I aim to please! 

    Susie

  • CatbirdC
    CatbirdC Member Posts: 235
    edited February 2010

    Hi All,

    I agree with the gall bladder like pain returning....not being the  big T Susie.   I had gallbladder pain and surgery so my heart goes out to you Ainm as I know how terribly that hurts.  I did have several times that I had a similar but much lesser pain in that same area.  It was after I over ate or ate something I shouldn't. 

    My friend enjoys Arizona just like yours Kelly.  She's willing to take the time of super duper heat for all the other benefits.

    Have any of you spotted the controversy brewing over the CYP2D test that has been going on  recently???   I've never had the test nor do I plan to unless my onc brings it up....and I don't think  that will happen with insurance as it is.

    Bonnie

  • micheleboots
    micheleboots Member Posts: 885
    edited February 2010

    Hello ladies, I have been checking out this thread and you ladies seem like you a lot of knowledge.  Right now I could use a little more tamoxifen knowledge.  I had a mastectomy in August and just completed my FEC-T chemo last week..Next I will be starting rads in a month or so.  I am trying to gather as much info on Tamoxifen as I can.  I have only managed to read a few pages of this thread, as it would take me all year to read everything...besides I am still to pooped from chemo to do much...

    By the way, I love all the cute kitty pictures, Suzie.

  • bcamnb
    bcamnb Member Posts: 334
    edited February 2010

    Welcome Michele...

    Ask away and we will try and answer. Lots of great women here with good ideas and super sense of humour.

    Good luck!

    Caroline

  • Hannahbearsmom
    Hannahbearsmom Member Posts: 266
    edited February 2010

    CatbirdC: What's the controversy about the CYP2D test? I'm trying to enroll in the study. I am in my 16th week of tamoxifen and was told that you have to be on it 16 weeks to enroll. I just left a message with the study nurse earlier today but haven't heard back from her.

    TCK

  • kcl65
    kcl65 Member Posts: 741
    edited February 2010

    Hello My Dear Tamoxifriends!!

    Well I did it!  I ran to the store looking like a grunge, hair not done and no make-up and of course ran into 2 people I know.  Not the kind of know when you can joke and do the "wouldn't ya know it..." type of thing, but the "oh hello how nice to see you again..." In the meantime you're cringing inside... oh well LOL!!! Cool

    Bonnie & TCK ~ Yes I did see the CYP2D and decided not to read anymore, the soy thing is worrying enough. From what I picked up there is some controversy over the accuracy of the test, particularly with us pre-menopausal women.  I did have the test done and I was a good metabolizer of the T. Anyway, TCK I could be wrong as I say I just quickly glanced through the posts.

    Michele ~ Welcome and as stated please do feel free to ask away!! 

    Have a wonderful evening ladies!

    Kelly :)

  • Harley44
    Harley44 Member Posts: 2,126
    edited February 2010

    Kelly,

    That always happens to me, too!  When I go to the store, looking really ... grungy...  my hair is greasy, and one day, I was even wearing sweats...   wouldn't you know it, that is when I saw EVERYONE I knew...  people you don't want to see you looking like that...

    Michelle

    Welcome to the Tamoxi train!  I have recently switched from 2 yrs on the Tamoxi train, and I'm now taking Femara.  I seem to be doing ok.  Please ask any questions, and the girls here will help. 


    HUGS
    Harley

  • revricki
    revricki Member Posts: 51
    edited February 2010

    Hi ladies! I'm sure this has been asked over and over, but I'm hoping to skip reading so many pages.....I've been on 20mg of Tamox for one week now and am wondering how fast do the side effects, if any, start? Which ones come first in your experience? Thank you.

  • bcamnb
    bcamnb Member Posts: 334
    edited February 2010

    Hi revricki,

    Seems SEs can come at any time. My onc said they should stabilize at 3 - 4 mths. Susie had immediate awful headaches, but they have lessened. My (minor)  night sweats started about 2 weeks in and the morning low back stiffness after about a month. Every woman seems to be an individual (so what else is new?!). Some have MAJOR SEs; others like myself, have v minor ones. As far as I can tell, nothing is predictable.

    Best wishes on this journey

    C

  • Susie09
    Susie09 Member Posts: 225
    edited February 2010

    HI micheleboots!  I know, this thread is huge, isn't it.  I couldn't start tamox until after I finished rads.  And then I was afraid to, but, decided that it was the best thing for me to do to prevent the beast from coming back and I am glad that I did.  What do you want to know?  You have a wealth of knowledge here in these tamoxibeauties!  Yes, that is what I call them cause they are!  I hope we can help you out!

    Ainm, did you call your surgeon and find anything out?  Praying that you are feeling better.

    Bonnieeeeeeeeeeeeeee...how you doing?

    Harley, you sleeping ok? 

    Kelly, want me to send you some snow?  lol

    Love, Susie

  • Susie09
    Susie09 Member Posts: 225
    edited February 2010

    Ok, this is long, but, I laughed so hard that well...you don't want to know.  Surprised  Hope you all do too!

    After I retired, my wife insisted that I accompany her on her trips. Unfortunately,
    like most men, I found shopping boring and preferred to get in and get out. Equally
    unfortunate, my wife is like most women - she loves to browse. Yesterday my dear
    wife received the following letter from the local Wal-Mart:

    Dear Mrs. Sanservino,

    Over the past six months, your husband has caused quite a commotion in our store.
    We cannot tolerate this behavior and have been forced to ban both of you from the
    store. Our complaints against your husband, Mr. Samuel, are listed below and are
    documented by our video surveillance cameras.

    June 15: Took 24 boxes of condoms and randomly put them in other people's carts
    when they weren't looking.

    July 2: Set all the alarm clocks in Housewares to go off at 5-minute intervals.

    July 7: He made a trail of tomato juice on the floor leading to the women's restroom.

    July 19: Walked up to an employee and told her in an official voice, 'Code 3 in
    Housewares. Get on it right away'. This caused the employee to leave her
    assigned station and receive a reprimand from her Supervisor that in turn resulted
    in a union grievance, causing management to lose time and costing the company
    money.

    August 4: Went to the Service Desk and tried to put a bag of M&Ms on layaway.

    August 14: Moved a 'CAUTION - WET FLOOR' sign to a carpeted area.

    August 15: Set up a tent in the Camping Department and told the shoppers' children
    he'd invite them in if they would bring pillows and blankets from the Bedding
    Department, to which twenty children obliged.

    August 23: When a clerk asked if they could help him he began crying and screamed,
    'Why can't you people just leave me alone?' EMTs were called.

    September 4: Looked right into the security camera and used it as a mirror while
    he picked his nose.

    September 10: While handling guns in the Hunting Department, he asked the clerk
    where the anti-depressants were.

    October 3: Darted around the store suspiciously while loudly humming the 'Mission
    Impossible' theme.

    October 6: In the Auto Department, he practiced his 'Madonna look' by using
    different sizes of funnels.

    October 18: Hid in a clothing rack and when people browsed through, yelled 'PICK
    ME! PICK ME!'

    October 21: When an announcement came over the loudspeaker, he assumed a fetal
    position and screamed 'OH NO! IT'S THOSE VOICES AGAIN!'

    And last, but not least:

    October 23: Went into a fitting room, shut the door, waited awhile, then yelled very
    loudly, 'Hey! There's no toilet paper in here.' One of the clerks passed out. Laughing

  • Grakenmom
    Grakenmom Member Posts: 137
    edited February 2010

    Hi - could someone please post a link or further info regarding the CYP test controversy?  I'd like to read up as I have an appt with my onc in a few weeks.

    Thanks so much for any info you can provide. Hope everyone is well & warm. xo, E

  • micheleboots
    micheleboots Member Posts: 885
    edited February 2010

    Hello ladies here are some questions for you all to weigh in on..

    I have been reading the SEs for Tamoxifen and they scare the crap out of me...I am prone to headaches and can't imagine living with headaches for any length of time..what is your experience on that one..then there is endometrial cancer, blood clots in the legs, and lungs, and chance of stroke. OMG, these can be as bad as the cancer itself...which is worse. 

    My ONC has given me other options as well...like having a LHRH along with the Tamoxifen.  I have been trying to get more info on this "LHRH", but can't seem to find out to much.  As well she mentioned taking the "LHRH" as well as Aromatase, instead of Tamoxifen...I have an appointment with her to discuss all this in a few weeks.  I just want to make a good decision...The thought of making the wrong decision is freaking me out...help.  Has anyone else had to make these decisions?

  • kcl65
    kcl65 Member Posts: 741
    edited February 2010

    Susie ~ hahahahaha! That is hilarious! And please, no snow thank you...lol! Cool

    Grakenmom ~ It was one of the new topics on the message boards, not an article... I still have to research it myself.  I think that UC San Francisco has done a study and is continuing to study the T and the CYPD26 test. I'll finish this message and then find the topic and post the link for you.

    revricki ~ Welcome and yes, Ses do come at different times for all of us.  I experienced my first in my second month of taking the T.

    michele ~ The Se's are scary. I wasn't presented with a choice as I am pre-menopausal and was told the T was the best for me.  Unfortunately it is a decision that only you can make, but you are being wise reading up on everything and talking to your onc.

    Harley ~ LOL!! Always happens when you're not ready for it.  Today I am all together with the hair done, make-up and nice clothes and haven't run into anyone I know! Haha!Like Susie asked, how are the sleeps doing?

    Have a good day all!

    Hugs,

    Kelly :)

  • kcl65
    kcl65 Member Posts: 741
    edited February 2010

    Grakenmom ~ I'm so sorry, but I can't find that thread. Bonnie ~ Do you think you can find it again?

    Jeanette ~ I miss you, hope all is going well!

    Thanks,

    Kelly :)

  • Erika09
    Erika09 Member Posts: 87
    edited February 2010

    I went to see my hermat/onco yesterday.  I am more confused now than before!  She told me that I fall into the ‘GRAY ZONE' regarding tamoxifen, and that no studies have been done on people with my diagnosis. They don't really know of the benefits of it for women who have had bilateral mastectomy while ALL tumors were smaller than 4mm.

    I also do not fall into the Oncotype DX  category since all 3 tumors found were 4mm or smaller and insurances do not pay for this expensive test unless tumor is 1cm or bigger.

    She recommended that I take it as a preventive measure, knowing that it would improve by 1-2% but she'd be OK with my decision if I decide not to take it! Again, it is left to the patients decision....This is wearing me out!!  My first reaction is of not taking it! How much improvement can 1-2% be compared to all the side effects??  On the other hand, I don't want to contribute to the possible growth of Mr. Cancer cells either!

    Ladies, if you have any light to my confused mind I so greatly appreciate it!

  • bcamnb
    bcamnb Member Posts: 334
    edited February 2010

    One of the test threads is:

    http://community.breastcancer.org/forum/78/topic/747562?page=2#idx_38

    composed a LONG note to Michele - and lost it all before I could submit it ;-((((

    may try again later.

  • Harley44
    Harley44 Member Posts: 2,126
    edited February 2010

    Susie,

    LOL  at your Wal-Mart story!!  too funny!

    Susie and Kelly, 

    I guess I'm sleeping ok...  I wake up often, but I guess that is 'normal' for me... now...

    Erika09

    I was in the GRAY area for the Oncotype test...  a 28...   I decided to get chemo anyway.  My onc said that chemo would only give me 4% benefit...   I know that 4 is still bigger than 1-2... 

    I looked at it this way:

    IF the cancer comes back and I DIDN'T get chemo, I would NEVER forgive myself... so I did it... and now I can say that I did everything I could to prevent recurrance...  I know, still 1 or 2% is really not much...

    For the Hormonal treatment, I decided that I could always start it, and if I had too much trouble with se's, then I could stop taking it...   and then at least I tried it...   

    just my 2 cents worth...

    good luck with your decision... I would understand if you declined...

    Hugs

    Harley

  • Sparrow
    Sparrow Member Posts: 80
    edited February 2010

    My oncologist didn't think the CYP2D6 test was important.  She was a little rushed at my appointment and didn't say why.  I'll ask her again in 3 months.  

    Erika, that's a tough decision and I don't have any advice other than to listen to your gut-  let us know what you decide.  Good luck! 

  • CatbirdC
    CatbirdC Member Posts: 235
    edited February 2010

    CYP2D6   INFO ~~

    It's the same forum as us  Hormonal Therapy Before During and After~

    Go to Bottle of Tamoxifen and count down 9 subjects.....

    It's called CYP2D6  Test No Longer Working and was created by HLYA on 1-29

    (I dug this out of my wastebasket. LOL)Tongue out

  • MTG
    MTG Member Posts: 337
    edited February 2010

    Micheleboots - I too was scared as hell of the various SE and did tons of research. I've also been prone to horrendous migraines all my life so here are the solutions I came up with for myself.

    To avoid  headaches -  I started taking a vitamin called CoQ10 and to my surprise I've had fewer headaches now than I did before. 

    To avoid muscle aches - I started fish oil capsules and also make Mocktails with tonic water

    To avoid bloodclots and strokes - you can always take a daily baby aspirin, enteric coated is best for the stomach.

    To avoid endometrial cancer - or at least catch it early - I have gyno appointments including transvaginal ultrasounds every 6 months (and I had one just prior to starting T to establish a baseline.

    Oh, I also take Vitamin D3 for a multitude of reasons....having never even been a multivitamin taker, I'm now take 4pills daily ....not a big deal at all ! 

    Hope this helps....

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