Tamoxifen - no side effects then not working?

iluvmykids
iluvmykids Member Posts: 49
in Breast Cancer #1
I was looking on whatnext and someone posted that if I don't have any side effects from tamoxifen, then it isn't working and I need to get tested!! According to them, this comes from the manufacturer. My oncologist said "great" when I told her I didn't notice any side effects, see you in 3 months.

I did as much research as humanly possible on Tamoxifen before I started taking it and never once saw anything remotely saying this, plus wouldn't my oncologist KNOW this?? Put me on something else?

Has anyone else heard this or have more information?

Appreciate it!

Comments

  • Rague
    Rague Member Posts: 3,653 Member
    #2
    Ask your pharmacist
    Pharmacists often know more about drugs than do Drs.

    I've never heard that but I'm not on Tamoxifen - I'm on Femara. To me it's makes no sense at all. IF not having side effects means something isn't working then for most of us most of the times anything we take for anything would not be working as most of the time there are no SE's. Speaking for myself that would say tht the thyroid pills I'm on now aren't working because I'm not experiencing SE's from them (according to my blood work they are working).

    Susan
  • mollieb
    mollieb Member Posts: 148
    #3
    I Agree With Rague
    Both as to asking your pharmacist and the likelihood that whoever posted that is wrong. How long have you been taking Tamoxifen? Side effects don't always show up right away (gee, isn't that good news?). But in any case, if you don't have side effects, Yippee! I would not assume the drug is not doing its job.
  • ender
    ender Member Posts: 167
    #4
    mollieb said:

    I Agree With Rague
    Both as to asking your pharmacist and the likelihood that whoever posted that is wrong. How long have you been taking Tamoxifen? Side effects don't always show up right away (gee, isn't that good news?). But in any case, if you don't have side effects, Yippee! I would not assume the drug is not doing its job.

    Hi there,
    I just started
    Hi there,

    I just started Tamoxifen too. Like you, Im not having any side effects. My MO actually said she expected me not to have ANY side effects due to still being premenopausal. I have never heard that this would mean its not working. How do you get tested to see if it works? I have not heard that this is possible.

    Eva
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #5
    I did not really have side
    I did not really have side effects until 3 yrs into taking it..then had to have total hysterectomy! Mild hot flashes was about it until thickening of uterus then post memo bleeding. I told all my dr no side effects to speak of and none have been concerned..(gastro/OB/2 oncologist)

    Denise
  • butterflylvr
    butterflylvr Member Posts: 944
    #6
    disneyfan2008 said:

    I did not really have side
    I did not really have side effects until 3 yrs into taking it..then had to have total hysterectomy! Mild hot flashes was about it until thickening of uterus then post memo bleeding. I told all my dr no side effects to speak of and none have been concerned..(gastro/OB/2 oncologist)

    Denise

    Sounds silly to me, people
    Sounds silly to me, people taking blood pressure medication can't tell the pill is working either until they get their pressure taken. I've been on tamoxifen now for three months, the last time my Mo did my lab work to check my markers she had something with my estrogen checked in my blood too. I bet that's so I know my starting markers before taking the drug. I would say if you have no side effects consider yourself lucky. I'm in that group too...

    Hugs,
    Lorrie
  • iluvmykids
    iluvmykids Member Posts: 49
    #7
    mollieb said:

    I Agree With Rague
    Both as to asking your pharmacist and the likelihood that whoever posted that is wrong. How long have you been taking Tamoxifen? Side effects don't always show up right away (gee, isn't that good news?). But in any case, if you don't have side effects, Yippee! I would not assume the drug is not doing its job.

    Have been on about 1 1/2 months.
    I never thought about asking the pharmacist, but the next time I get it filled, I will, just for peace of mind. Maybe some of them will show up later when I go through menopause, etc.

    I thought this person was kind of out there, because how many drugs have a grocery list of "possible" side effects and how many really show up?

    Thanks!
  • iluvmykids
    iluvmykids Member Posts: 49
    #8
    butterflylvr said:

    Sounds silly to me, people
    Sounds silly to me, people taking blood pressure medication can't tell the pill is working either until they get their pressure taken. I've been on tamoxifen now for three months, the last time my Mo did my lab work to check my markers she had something with my estrogen checked in my blood too. I bet that's so I know my starting markers before taking the drug. I would say if you have no side effects consider yourself lucky. I'm in that group too...

    Hugs,
    Lorrie

    I thought so too, when I
    I thought so too, when I first saw it, her post was full of !!!! telling me to get it changed right away. Sheesh. I will certainly ask my MO about it the next time I see her, and maybe she can check that in my blood work too. Glad your not having side effects either!

    Thanks and Hugs back at you!
  • LoveBabyJesus
    LoveBabyJesus Member Posts: 1,679 Member
    #9
    I started tamoxifen a month
    I started tamoxifen a month and 1/2 ago. I have only had hot flashes from this medication.

    Each drug comes with a # to call to report any side effect that presents itself. As soon as one person calls, this side effect is noted because they want to protect themselves, therefore they include it as a "side effect" - (e.g. like those commercials that mostly cover side effects). There are also stats that would say what is the % of people experiencing "x" side effect for taking that spicifc drug. In many cases, most people do not experience many (if not any) side effect from taking the medication. If you are on of those, AMEN to that sister! You are lucky. :)

    Good luck with everything. And please keep us posted.
  • Jean Chambers
    Jean Chambers Member Posts: 3
    #10
    Does Tamoxifen work
    I went to my Mayo doctor yesterday to start Tamoxifen because I can't take the first 2 drugs that he gave me and he said I have to be tested to see if it will work for me. It is true that it does not work for some people. Mayo is doing a study with 200 BC patients which they asked me to participate. It is to find a drug that will help Tamoxifen work better because it is one of the drugs with milder side effects.
  • TraciInLA
    TraciInLA Member Posts: 1,994 Member
    #11
    Jean Chambers said:

    Does Tamoxifen work
    I went to my Mayo doctor yesterday to start Tamoxifen because I can't take the first 2 drugs that he gave me and he said I have to be tested to see if it will work for me. It is true that it does not work for some people. Mayo is doing a study with 200 BC patients which they asked me to participate. It is to find a drug that will help Tamoxifen work better because it is one of the drugs with milder side effects.

    Metabolizer blood test before starting Tamoxifen
    I believe the test Jean is referring to is a blood test to determine how well you will metabolize Tamoxifen. My oncologist does this test as a matter of practice before starting any patient on Tamoxifen, though not all oncologists do. I was classified as an "intermediate metabolizer," which he said was good, and the most common result.

    This test -- NOT whether or not you have side effects -- is considered to be a good predictor of how effective Tamoxifen will be.

    Hope this helps,

    Traci
  • jnl
    jnl Member Posts: 3,869 Member
    #12
    ender said:

    Hi there,
    I just started
    Hi there,

    I just started Tamoxifen too. Like you, Im not having any side effects. My MO actually said she expected me not to have ANY side effects due to still being premenopausal. I have never heard that this would mean its not working. How do you get tested to see if it works? I have not heard that this is possible.

    Eva

    Some have side effects with
    Some have side effects with tamox and some don't. I don't know if you don't, if that means it isn't working.

    Wishing you the best with tamox!

    Leeza
  • Jennifer1961
    Jennifer1961 Member Posts: 137
    #13
    Sounds silly to me. I don't
    Sounds silly to me. I don't have many side effects and my oncologist thinks that's great. Don't believe everything you read online. Contact the manufacturer is you're really worried.
  • Frankie Shannon
    Frankie Shannon Member Posts: 457
    #14
    I have been on Tamoxifen
    I have been on Tamoxifen since July 2010 and have no side affects from it i have never heard that if you don't have side affects it isn't working,i have hot flashes but i had them before my Onc.put me on it.
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
    #15
    TraciInLA said:

    Metabolizer blood test before starting Tamoxifen
    I believe the test Jean is referring to is a blood test to determine how well you will metabolize Tamoxifen. My oncologist does this test as a matter of practice before starting any patient on Tamoxifen, though not all oncologists do. I was classified as an "intermediate metabolizer," which he said was good, and the most common result.

    This test -- NOT whether or not you have side effects -- is considered to be a good predictor of how effective Tamoxifen will be.

    Hope this helps,

    Traci

    Traci is right. There is a
    Traci is right. There is a blood test to see how you will metabolzie tamox. Some oncologist's feel that if you aren't a good metabolizer of it, then it might not do its job. But, always talk to your doctor about this.


    Jan
  • mruczko
    mruczko Member Posts: 110
    #16
    Tamoxifen
    I myself was treated for HERPos cancer, therefore no Tamoxifen. My neighbor, however, was on the drug for 5 years, she was 78 years old when she started. She never had any side effects and no recurrence of disease.
    Marlene
  • phoenixrising
    phoenixrising Member Posts: 1,508
    #17
    I have heard this before but
    I have heard this before but I don't believe it. I had a terrible time with Tamoxifen a couple of years back and had the DNA cyp2D6 test done to see if I was metabolizing it fully. It came back that I was an intermediate metabolizer which means I wasn't fully metabolizing the tamoxifen into endoxifen which we need to prevent BC. This made sense to me as there are a number of drugs that are metabolized by this pathway that I have had trouble with. There was quite a hoopla about this a couple of years ago and lots of discussion on breastcancer.org.

    Many women wrote in that they had been tested and were normal metabolizers and had no side effects and actually the New York Times did an article about this as well. The woman they chose to cover had horrific side effects and found out she was a poor metabolizer....she was not a happy camper. However, there are docs and scientists that dispute the value of the tests. Last I heard it was suggested that the pharmaceutical companies develop the end drug "endoxifen" thereby eliminating the need to metabolize Tamoxifen.

    All I can say is I'm glad I had the test done, it answered a lot of questions for me but some gals may feel different. Hope I have a least given you some info that you can look into it yourself and not have confused you further.
    jan
  • DianeBC
    DianeBC Member Posts: 3,881 Member
    #18
    phoenixrising said:

    I have heard this before but
    I have heard this before but I don't believe it. I had a terrible time with Tamoxifen a couple of years back and had the DNA cyp2D6 test done to see if I was metabolizing it fully. It came back that I was an intermediate metabolizer which means I wasn't fully metabolizing the tamoxifen into endoxifen which we need to prevent BC. This made sense to me as there are a number of drugs that are metabolized by this pathway that I have had trouble with. There was quite a hoopla about this a couple of years ago and lots of discussion on breastcancer.org.

    Many women wrote in that they had been tested and were normal metabolizers and had no side effects and actually the New York Times did an article about this as well. The woman they chose to cover had horrific side effects and found out she was a poor metabolizer....she was not a happy camper. However, there are docs and scientists that dispute the value of the tests. Last I heard it was suggested that the pharmaceutical companies develop the end drug "endoxifen" thereby eliminating the need to metabolize Tamoxifen.

    All I can say is I'm glad I had the test done, it answered a lot of questions for me but some gals may feel different. Hope I have a least given you some info that you can look into it yourself and not have confused you further.
    jan

    Great info Jan! Thanks!

    Great info Jan! Thanks!

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