Tamoxifen

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dlm217
dlm217 Member Posts: 81
edited June 2014 in Stage III Breast Cancer

I finished chemo a week ago today.  I am waiting for the MO office to call and schedule an appointment for me to discuss hormone therapy and start it.  I thought I was going to start this after my exchange surgery and radiation.  Is this something that every stage III with ER and/or PR + needs to take?  I just finished chemo.  I am still dealing with the side effects from that and am not looking forward to a pill for 5 years that will have side effects.  Anyone not take it?

Comments

  • ICanDoThis
    ICanDoThis Member Posts: 1,473
    edited April 2012

    OK, let me give you "the speech."
    You are young, and you have hormone-responsive cancer. Tamoxifen is probably the most important thing you will do, after surgery. It is more effective then chemo.  I know that it just seems like an annoying pill, but hormone treatment is the most powerful tool in your MO's arsenal.

    Depending on how aggressive your onc might be, the recommendation might also be ovarian suppression (injections or take them out), followed by an AI, which are 1-2% stronger than tamoxifen.

    Every time I see a stage III woman, especially a young woman, talk about skipping hormone therapy, it makes me sick to my stomach. Many of us do not have any side effects at all, or, if we do, it is managable. And I want you to get old!

    Please, go in for your visit with an open mind.

  • dlm217
    dlm217 Member Posts: 81
    edited April 2012

    Thanks ICan.  I will go in with an open mind.  When this started the first dr. I saw initially was thinking stage 0 or 1.  I then had a 2nd and 3rd opinion.  I went with the 3rd dr. and things went fast from there.  So the stage IIIa diagnosis was a shock.  I never gave a 2nd thought to the treatment plan they layed out for me after surgery until now. They said since it's stage III we are going to throw everything we can at this to fight it and I was all for it.  I was reading on here some of the side effects people are having and have been down lately with the way I feel and look.  The whole mx, te, weight gain, no hair, looking and feeling liked I aged 10 years over night.  The thought of more of that for the next 5 years suddenly seemed overwhelming. 

  • barsco1963
    barsco1963 Member Posts: 2,119
    edited April 2012

    dlm217 -  I agree with Ican - try the tamoxifen! You may find that you are ok with it. There are many of us that are taking it with few side effects. Most of them are manageable when you put it into perspective. I think that if it is keeping the cancer at bay (it is working well for me) then I will put up with a few unpleasant SEs.

    Good luck!

  • Celtic_Spirit
    Celtic_Spirit Member Posts: 748
    edited April 2012

    I completely agree with ICanDoThis. And let me add that the side effects from treatment of Stage IV cancer would make tamoxifen feel like a walk in the park. Take the tamoxifen. I took it for two years before switching to Arimidex. I'd much rather gain some weight and ache than be dead.

  • MaxineO
    MaxineO Member Posts: 555
    edited April 2012

    I wasn't looking forward to tamoxifen either, but I have been on it for about 8 months, and the side effects have been minimal to non-existent for me. I haven't gained weight or had thinning hair or even had joint issues.  I suspect you are still feeling crummy thanks to the chemo, but once that 'toxic' feeling is gone, you will start to regain energy.  Everyone responds differently to the tamoxifen.

    I am with ICanDoThis, do everything in your power to keep the BC beast at bay.  I am also on an ovarian suppressant injection (I'm 39 and pre-menopausal), in order to do everything in my power to keep that estrogen low.

  • Twinmom77
    Twinmom77 Member Posts: 303
    edited April 2012

    I felt the exact same way as you after finishing chemo, rads, and herceptin. I just wanted to be done with it all so, yes, I chose not to take it for the first dx after having some bad side effects.  But I got a 2nd primary 2 1/2 years later so I'm choosing to take it now. Plus onc said it was non-negotiable this time. I have had very few side effects this time around. I don't relish the thought of being on this drug for the next 5 years but I don't relish the thought of getting a 3rd primary or skipping straight to Stage IV either.  I steer clear of most Tamoxifen threads here except the one that was started recently about women who are NOT having bad se's.

    Maxine - how are you doing with the ovarian supp inj? How are the se's with that? I've asked my onc about doing that after Tamoxifen instead of ooph, but she doesn't seem to think it would be as beneficial for me as an ooph. I'll be 40 by the time I'm done with Tam and I really don't want an ooph.

  • elesha
    elesha Member Posts: 21
    edited April 2012

    I am considered an ER- , but I do have very slight 10%.  Do I need to do Tamoxifen?  My Onc seems to think that it is nto really necessary, especially given that I am plannign on ahving a second child after the treatment is finished (I'm 33)

  • TectonicShift
    TectonicShift Member Posts: 752
    edited March 2013

    I have been on Tamox for two days and so far I don't feel one bit different. A few minor hot flashes but I was having them long before starting Tamox.

    How long does it take for side effects to show up? 

  • NancyD
    NancyD Member Posts: 3,562
    edited April 2012

    elesha - it's more important that you get Herceptin than Tamoxifin or an AI.

    posy -  side effects can take a few weeks to a few months to show up. Some, like arthritis-like pain in joints, will flare with the weather just like regular arthritis. That's really been the only AI-related SE I've encountered that has stayed with me. And who's to say I wouldn't ben having these pains anyway at my age (almost 61)? I was already well-into natural menopause, so the hot flashes were nothing new, either.

  • Letlet
    Letlet Member Posts: 1,053
    edited April 2012

    My med onc told me hormone tx will reduce recurrence by one third which is pretty damn high to me.



    Elesha-my onc said anything over 50% is positive

  • MaxineO
    MaxineO Member Posts: 555
    edited April 2012

    Twinmom77:  The major unpleasant side effect of the ovarian suppression is the hot flashes. I had them on chemo, but my period came back after chemo, so the onc started me on the zoladex...and back came the hot flashes.  I didn't have hot flashes on JUST tamoxifen.  I am considering the ooph, eventually, but I suspect both alternatives result in hot flashes.

    I agree with NancyD, some SE's seem to show up after a while, and they can be hard to distinguish from just aging. I have always had bad knees, and they probably give me more problems now than before, but I can't say whether it's age, treatments, or SE's from the hormone therapy.

  • elesha
    elesha Member Posts: 21
    edited April 2012

    A little confused - so, anything under 50% is negative and will not benefit from Tamoxifen, for example?  Mine is only 10%...

  • pupfoster1
    pupfoster1 Member Posts: 1,484
    edited April 2012

    Funny dlm, as I had just posted a question a couple days ago to the group regarding if I should stay on it as I am now post menopausal (see previous post).  I have had few if any SE's from Tamoxifen, and you really shouldn't be afraid to at least give it a try before refusing it.  I've had a few hot flashes, but nothing super serious, and apparently it is considered the standard of care for hormone positive bc.  Just because someone else has had a bad expereince doesn't mean you will!

    Take care,

    Sharon 

  • WIMusicMaker
    WIMusicMaker Member Posts: 78
    edited April 2012

    Dim I have been on tamoxifen for three weeks. The side effects I have noticed so far is my joints stiffen up when I sit for too long. I walk like an even older lady then I am for about a minute once I get up, after that my joints are fine. My hotflashes have increased slightly. WIth both the joint issue and the hotflashes, I notice they are worse when I skip too many days of exercise-so I have a good incentive to exercise regularly. After reading all the horror stories about tamoxifen I was nervous about taking it too. So far it has gone much better than I ever dreamed. 

  • sweetbean
    sweetbean Member Posts: 1,931
    edited April 2012

    I am 38 and am on Tamox. I  had some minor side effects for 6 weeks and then they went away.  I have been fine ever since.

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