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Bottle o Tamoxifen

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Comments

  • bcamnb
    bcamnb Member Posts: 334
    edited March 2010

    Hi Gina,

    It all has been said above - know you've been added to my prayers - and we are all rooting for the return of your good health. BC be damned!!!!! 

    xo from the West Coast of Canada

    C

  • brendaw
    brendaw Member Posts: 19
    edited March 2010

    Gina:  Just try and take each day as best you can.  You have been through a lot. 

    Franken:  I think I am sharing the same thoughts as you, even though I have only been on this drug for 2 weeks. Weight gain; fatigue; swelling..  Not fun

    Keep fighting the good fight.

    Brenda 

  • Kyta
    Kyta Member Posts: 273
    edited March 2010

    Michele~ I have only had one period in the past year or so (as you know I'm 44 and didn't have chemo). I had to have the estradiol (sp?) blood test to make sure I fit the premenopausal criteria before I entered the SOFT trial, and it confirmed that I was. Since I'm not menstruating I'm at least peri-menopausal but still producing enough estrogen to meet the definition of pre-menopausal.

    It's my understanding that tamox doesn't stop estrogen production but rather it acts against the effect of estrogen in the breast specifically.

    I've never heard of Eligard injections....what is this? 

  • micheleboots
    micheleboots Member Posts: 885
    edited March 2010

    Mich-m, it is like Lupron or Zoladex, it's used to shut down the ovaries.  It's used with Tamox or Aromatase inhibitors.  It is though to help ER+ cancers.  If the ovaries aren't producing estrogen then less chance of recurrence..I will get it every 28 days.  The nurse will come to the house to give it to me.  The onc said it's one mother of a needle...her words exactly..she cracks me up.

  • Kyta
    Kyta Member Posts: 273
    edited March 2010

    Ya I heard ovarian suppression involves a big needle.....good luck with it:)

  • elimar
    elimar Member Posts: 5,886
    edited March 2010

    I knew of the stats that MTG has given about a percentage of women being poor metabolisers of Tamox.  I had to request a CYP2D6 test from my doctor, then had to wait since insurance declined to pay (but an appeal letter from my doc did get the benefits granted.)  I was relieved to learn I am an "extensive metaboliser."

    I, too, think the test should be offered to anyone who gets it prescribed.  BUT the most probable arguments I have heard for it NOT being routinely offered are these:

    1)  A number of women go off it after just a few months, so up-front testing would incur an un-needed expense.

    2)  In pre-menopausal women, the number of women who would be found to be poor metabolisers would not have a good alternative, since they can't use AIs.  Their other options would be ovarian suppression or removal, both costing more than the Tamox., so you can see why insurance providers would not be in favor of the test as a standard of care.

    SO, ONCE AGAIN WOMEN, WE HAVE TO ADVOCATE FOR OURSELVES ON THIS ONE AND ASK FOR THE TEST IF OUR DOCTORS DON'T MENTION IT.

  • mimi1964
    mimi1964 Member Posts: 851
    edited March 2010

    Hey Ladies I started taking Tamox on 2/24/10.  Here it is about 3 weeks later and I'm having some side effects (I think).  Two days ago both of my knees started making creaking and scrubbing sounds, no pain or anything but just the sounds of like cartilage rubbing.  It sounds terrible, like someone who has terible degenerative joint disease in their knees, which I do not, but now I am afraid I will get because of tamox.  I have never had any problems in the past with my knees this is the weirdest  thing ever.  I was wondering if any of you have ever had this in any of your joints.  I  bought some Glucosamine chondritin and started taking it. 

    Thanks Renee

  • bcincolorado
    bcincolorado Member Posts: 4,751
    edited March 2010

    Gina:

    You are in my thoughts and prayers!  May you heal quickly and get back to "cancer road to recovery" normal soon!  I know it is discouraging but you do have a lot of support here from people who understand and have "been there."

  • MBCR
    MBCR Member Posts: 51
    edited March 2010

    Gina: positive thoughts & blesssings to you!

  • CatbirdC
    CatbirdC Member Posts: 235
    edited March 2010

    GINA  ~~

    So sorry to hear all that you have been going through.  I did a drive by and noticed your name over and over so searched to see what happend.

    You're in my thoughts and prayers and those of all of us I'm sure.  Hang In There.

    Bonnie

  • ReginaR
    ReginaR Member Posts: 97
    edited March 2010

    Thnak you all so much! You have no Ideal what reading your post has done to cheer me up. Althou I am crying while I am typing this!But knowing you are there is so comforting.

    I am very emotional now & hope this  will past, I am not sure if it because I am now back to square one & have to heal for 3-6 months before reconstruction can start agin Or if that fact of looking at this  ugly deformed breast or if it The Tamoxifen. I see my Plastic Surgeon on Monday & onocolgist on tues. so maybe I 'll get some answer, but I think  you all can help me more than the Doctors can & have! You all are so great!

     Hugs to all my sweet pink pals!  Thank you again xoxox

    Gina

  • echosalvaje
    echosalvaje Member Posts: 73
    edited March 2010

    Renee, the SE's from Tamox are so random and different for everyone. I noticed after a few weeks of taking it all of my joints were achy but once I got moving it seemed to dissipate. I haven't had any emotional ups or downs, nor have I had the headaches many struggle with. Frankly, I don't seem to be having any "noticeable SE's" at all. Oops, I take that back....I've had dizziness and slight fainting spells occasionally. But chemo gave me A-fib and sometimes I think the dizzies may come from that.

    Be sure and check the list of things that suppress Tamox. I was taking Benedryl to get to sleep and discovered it on the list of things to avoid and have weaned myself off.

    Gina, hang in there girl, we're all in your corner.

  • brendaw
    brendaw Member Posts: 19
    edited March 2010

    Renee;  I have not heard of that as a side effect but then again I guess SE can be different for everyone.

    My job for the day today was do 20 minutes on the treadmill and I could only get  7 minutes in before my legs starting feeling very fatigued.  I will try again tomorrow.

     Brenda 

  • LISAA401
    LISAA401 Member Posts: 14
    edited March 2010

    Okay tamo beauties of wisdom .Help !!!!!! I am 39 nine months out from lumpectomy 1.8 st 1 no nodes er+pr+ her- brca- onco 21. had chemo t/c x4( we went at it aggressively and I have no regrets and never will say I wish i had) and rads and now with tamoxifen about 5 weeks. I triumphed thru my tx no real side effects except hairloss and metal mouth. never missed a day of work. starting wed I have noticed an ache in my rt hip and in my left knuckle. comes and goes.. I am afraid of mets...... Tell me it is true that tamo can cause joint pain.... I have done amazingly well on this journey and pray for no more bad news. I have overhauled my diet losing 23 lbs since 2/1 working with a nutrionist. any suggestions..... this worrying is going to kill me. Does it help to take at night or with motrin? etc any other suggestions..... oh women of wisdom. I had a pet scan back in sept prior to lumpectomy and no skeletal lesions. please any words!!!! thanks Lisa

  • MTG
    MTG Member Posts: 337
    edited March 2010

    Lisa,

    Joint pain can absolutely be a side effect of Tamoxifen ! Take a look at this link: http://community.breastcancer.org/posts/search?commit=Search&search_builder%5Bauthor%5D=&search_builder%5Bdate_range%5D=&search_builder%5Bkeyword%5D=Tamoxifen+%22joint+pain%22&search_builder%5Bsource%5D=&sort=score,   there are 1,011 posts about Tamoxifen and joint pain. It seems that many ladies take glucosamine and/or omega-3 fish oil to help.

  • rgiuff
    rgiuff Member Posts: 339
    edited March 2010

    I haven't posted on this forum in quite awhile.   Just read the last 2 pages as it's way too much to catch up on!    Sorry to hear  what you've gone through Regina, hopefully the time will pass rapidly for you. 

    I am on tamoxifen about 16 months now and have absolutely had an aggravation of pain in my slightly arthritic right knee.  I also have had neck pain and right hip pain, as well as weird transient pains in various spots around my body.  But I was told by my Onc to take tumeric for joint pain and it really does help.  I've also read that it's considered to be preventative against breast cancer, so that just 1 more reason to take it.  Occasionally I stop taking it for a few days just as a test and always notice that the pain is getting sharper, and then resolves once I start up on it again.  I also do yoga, which helps keep that hip pain from flaring up.  And I've added fish oil and 1000U of Vit. D.  These were my own idea due to really low Vit D level of 28 and reading all the benefits of both supplements.  My Onc says he has no objection to either.

    My Onc recently ordered the tamox metabolization test, only because my hot flashes had stopped for awhile, and he was worried that maybe the tamox wasn't working for me.  (A while back, I had asked him about the test and he had said he didn't think it was necessary since I was having hot flashes)The results came back that I metabolize it,  so at least I know that it may be giving me some benefit.   

    Funny thing is, since I was perimenopausal when all this started, I recently went 10 months without a period, thinking, "OK, this is it, I'm probably postmenopausal now", then voila, in January and then again in February, I had full 5 day periods.  Now that it doesn't seem to be coming this month, I've noticed the hot flashes are back again.

  • bcamnb
    bcamnb Member Posts: 334
    edited March 2010

    Hi Rose,

    Really interested your onc suggesting turmeric. I avoid it as much as I can because it increases tamoxifen, thereby decreasing endoxifen - the active agent we need. I know it is highly touted as a miracle preventative for cancer - we were taking a mix of it, black pepper and olive oil (THE way to ingest it) until I started tamoxifen. But then I am only an IM so I am triply careful what I ingest.

    C

  • ReginaR
    ReginaR Member Posts: 97
    edited March 2010

     My dear T friends, I am so weak after this last surgery Tues( Infection & had to remove my TE)I feel like a mack truck hit me.I can not get  my energy back.

    My main concern is my legs, back of my calks or so sore. I hope I didn't devlope a blood clot while in hospital bed 1 week, Or could it just be The Tamoxifen causing  my back Calf pain? I see my surgeon  mon & oncocogist Tues.But wanted your opioin!

    Have any of you on "T" having back calf pain! I been on T since feb 12th.

    I hope you all are having a good weekend!

    Hugs to my pink pals!  Gina

  • Sparrow
    Sparrow Member Posts: 80
    edited March 2010

    Gina, I've been thinking about you and I'm glad you checked in!

    I'm sorry you feel so weak and sore.  You've really been through the wringer!  :(

    I haven't had back calf pain.  Could it just be soreness from being in bed so long?  I get sore when I'm sick and have to spend a couple of days in bed.  I'm hoping that's all it is.

    Let us know what your surgeon says tomorrow.  Feel better!!!    :)  -Tamara 

  • Chevyboy
    Chevyboy Member Posts: 10,258
    edited March 2010

    Hi Gina!  Can you call someone to check that it is NOT a blood clot?  It's just a thought!  You have had just one heck of a time!  Sorry about all the problems!  Yes, like Sparrow says, let us know as soon as you find out!  That can't be from the Tamoxifen.....could it? 

    I must be an anomaly or something...bcause I haven't had many side-effects!  I'm going to ask for the CYP2D test, when I go back in June...But the only think I have noticed is the "metal mouth"... I thought I had just eaten a bag of nails for the first week!  And I just dream all the time!  I don't have any more aches & pains than usual, and I still haven't had a hot flash!  But I'm so much older than you gals, I think!   So maybe good things come with age?  Ha!  Well maybe not cancer so much....but I am STILL so fortunate! 

    So Gina....warm hugs to you....and ALL you gals! xoxoxoxo Jeannette

  • bcincolorado
    bcincolorado Member Posts: 4,751
    edited March 2010

    Hi Gina:

    My mom got a real pain in the back of her calf and it was a "deep vein thrombosis" or or a small clot.  The doctgor had her making sure to move her legs and flex the feet several times a day to prevent it from coming back.  She was told to make sure to get up and move around when she traveles (which she does a lot) she has to make sure to stop the car and get out and walk around every 2 hours.  Please make sure to talk to your doc tomorrow and let us know what they say.  You are in my toughts!

  • kcl65
    kcl65 Member Posts: 741
    edited March 2010

    Hi Ladies!

     Just got back from my trip...11hrs in the car, but it was worth it and our friends' daughter was a beautiful bride!

    GINA~ Definitely call the doc just to make sure.  I've been praying for you girl and will continue to do so.  I thought of you often this weekend and want to send you (((((hugs)))))!

    Headed to bed!

    Hugs,

    Kelly :)

  • bcamnb
    bcamnb Member Posts: 334
    edited March 2010

    Question:

    If you reply twice to the same personal message, does the first message get wiped out and not sent? I think this has happened twice to me....

    Hope you're all having a good day.... gentle hugs Gina.....

    xo

    C

  • MTG
    MTG Member Posts: 337
    edited March 2010

    I can tell you Caroline - the message gets sent twice. Same result if it's an identical response and if it's a different one. As long as we dont take too long to draft it (boy, does that part drive me nuts; lost too many long ones that way), the reply will be sent as many times as we hit send.

  • bcamnb
    bcamnb Member Posts: 334
    edited March 2010

    nope, not for a personal message....you and I have just proved it - two of my messages were "lost" because I sent a second 'reply' before you commented on the first

    C

  • Susie09
    Susie09 Member Posts: 225
    edited March 2010

    Ok Tamoxibeauties..I apoligize for not being on much. I still have company and can't find the time to do everything.  But, I am thinking of all of you and praying for anyone that needs a prayer!

    My headaches came back, but, it could be the company and all of the stuff that we are doing.  Seems like we are always going somewhere.  Having a lot of fun and my hubby is very understanding that my girlfriend demands so much of my attention.  lol  So far, the Excedrin is working again.  One night I took a darvocet and not only did it kill my headache..I slept like a baby.  Kind of nice!  lol

    Well..gotta get to bed..exhausted.  But, wanted to leave you all with a smile on your face!  Enjoy!

    ♥ Susie

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

    Susie,

    Hi!!  I am getting headaches too...  sorry you are having them, but I'm glad that Excedrin is working for you.  I may take one in a little while.  I bought the 'generic' type.  Hope they work.  ;-)

    Have fun with your guests!!

    Harley

    P.S.   Edited to add:

    Thanks for the pic!  IT is SO cute!! 

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

    Oh, I just remembered....

    Yesterday was my THREE year cancerversary!!  March 15, 2007 I had my biopsy!!  That is the day that my surgeon took IT out!!  


    Hope everyone is doing well and having a smooth ride on the Tamoxi train!!  

    Harley

  • Sparrow
    Sparrow Member Posts: 80
    edited March 2010

    Hooray Harley!!!  :)  That's great to hear!  

    I'm going to try to put a link in to a transcript of a talk about hormonal therapy, but you'll probably have to cut & paste.  Why can't I figure out the simplest things on this board?  :/

    I found it answered a lot of my questions.

    http://www.lbbc.org/data/transcript-file/LBBChormonaltherapies10.pdf?tr=y&auid=6065503 

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

    Sparrow,

    Thanks!  I can't believe it has been THREE years!! 

    I know... I can't seem to even put those cute pics on here, like Susie does...   I don't know why I can't seem to figure it out!!

    Harley

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