Absolutely no side effects from Tamoxifen

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Dukip
Dukip Member Posts: 40

Hi all,

I have been on Tamoxifen since July 2015, after surgeries, FEC-T chemo, 25 radiotherapy sessions.

I am having NO side effects from Tamoxifen, nothing, no sweats, no hot flashes, no pain, no weight gain - no ANYTHING.  I know I should be pleased about that, but then I get scared that it is not working.

I only see my oncologist annually, and am not seeing him until September 2016.  So have nobody else to ask.

Anybody else the same as me?  Or anybody else with their thoughts would be most welcome.

Thanks and kind regards..

Comments

  • sheila888
    sheila888 Member Posts: 25,634
    edited April 2016

    Hi Dukip....I took Femara for 5 years with my first diagnosis and absolutely no side effects

    Second time around i started the same pill generic version it's been almost a month so far still no SE.....

    Sheila

  • Dukip
    Dukip Member Posts: 40
    edited April 2016

    Hi Sheila,

    Thank you so much for taking the time to reply.  I really appreciate it.  It's good to hear I'm not on my own, I know I should worry less.

    Thanks for letting me know that I am not the only one.

    Su X


  • dismay15
    dismay15 Member Posts: 343
    edited April 2016

    I don't have any answer, but I would consider you fortunate! I have some side effects, not terrible but they are as you listed. It is an interesting issue - I believe the symptoms like night sweats, hot flashes and weight gain can happen in natural menopause. Is it reasonable to think that tamoxifen will have different impacts on individuals based on there stage in life prior to starting this medication.

    I don't know as much about tamoxifen as I should, but I don't read about it because there is so much negative information about its impacts. So far, ignorance is bliss, but I'm not sure it's smart.

  • Maggs09
    Maggs09 Member Posts: 193
    edited April 2016

    Dukip, I've been on tamoxifen since 2012 and only had SE for about 2 months, and even those were limited to just some mild- moderate, short lasting hot flashes and moodiness.

    Not having SE or having mild ones doesn't necessary mean that medication is not working. Tamoxifen needs to be metabolized by your liver into its active form called endoxifen, which attaches itself to estrogen receptors on cancer cells, and blocking the real estrogen from feeding them.

    There is a small percentage of people that don't have ability to metabolize tamoxifen or have only one active alley in their genetic make up that allows it. That is easy to test with an appropriate blood test, and then checking endoxifen levels in your blood.

    Having said that, even people with only one active alley can have a great success with tamoxifen. And sometimes people who are potentially extensive metabolizers (both working alleys), of tamoxifen, can accidentally interfere with absorption of this drug in the gut, so there isn't enough metabolized to protect from the estrogen. Many antidepressants and supplements using enzyme CYP 2D6 to be metabolized, can interfere with the metabolism of tamoxifen; also taking calcium supplements less than 6 hours before tamoxifen can affect proper absorption, (calcium can "coat" other medication in the gut, so it cannot be absorbed, and it needs to be absorbed firstbefore it can be transferred to the liver to be metabolized).

    For example I had some adverse effects due to taking turmeric supplement. I'm an extensive metabolizer (I was lucky to be accepted into the research and have periodically checked endoxifen levels in my blood), however after taking turmeric supplement for just over a month, my levels dropped by half. Once stopped - I was retested in 3 months and it went back to even higher level. Apparently turmeric needs the same enzyme as tamoxifen to be metabolized.

    On another hand, taking Vit D has very positive impact on tamoxifen efficacy.

    The bottom line is that there are many factors impacting tamoxifen efficacy, and having or not having SE doesn't necessarily mean anything.

    I hope it helps 😊


    Maggs


  • TarheelMichelle
    TarheelMichelle Member Posts: 871
    edited April 2016

    Dukip, just because you don't have an appointment scheduled with your oncologist until September doesn't mean you are banned from the office. Go see your oncologist whenever you have a concern. It's your body and I guarantee you that your oncologist is not thinking about you, and wondering how you are doing on Tamoxifen. No, it's up to us to let our doctors know how we are feeling.

    Hot flashes may be related to whether you have your ovaries, are pre- or post-menopausal, or are still in "chemo-pause."

    Having said that, might as well enjoy the life without side effects. I don't know what the diagnostic protocol is for women after early-stage breast cancer, but a PET scan could help you feel more at ease by showing you that no tumors are present in your body (of course, there may be small, undetectable cancers, but my PET scan picks up when I've been stuck by a needle two days before, so I feel pretty well-scanned).

    Great info from Maggs09. I do wonder if there are other substances that interfere with Tamox metabolization. I did not know about turmeric.


  • snorkeler
    snorkeler Member Posts: 145
    edited April 2016

    When I started tamoxifen, I asked my oncologist about the CYP2D6 test. She said that she normally recommends it in cases when people have absolutely no side effects from tamoxifen. There is another SERM that is metabolized differently. I'm sorry that I don't remember the name.

  • chef127
    chef127 Member Posts: 891
    edited April 2016

    EVISTA (raloxifene)

    It is a SERM like tamoxifene, SE are similar but in the literature says "not a tx for bc?? Helps to build bones in post meno woman.

    My MO did suggest this IF the tamox did not work.

  • jojo9999
    jojo9999 Member Posts: 202
    edited April 2016

    Does anyone know how long it takes, on avrage, for the liver to metabolize the 20mg tamox tablet? I take mine in the morning and 12 hours later take turmeric, thinking that the time gap should help prevent interactions. Would like to know for sure.

  • Dukip
    Dukip Member Posts: 40
    edited April 2016

    Oh my gosh,

    Thanks all so much for replying.  I am in the UK and they don't do the CYP2D6 here at all - don't know why, they don't do tumour markers for my stage either.

    Dismay, I know I should be enjoying feeling well, but just niggling fears eat away at me.

    Maggs - thank you so much for all the information, I have a lot to learn!

    Tarheel - I was pre-menopausal, but chemo knocked my periods out immediately.  I did have hot flashes through menopause, but they stopped almost as soon as chemo stopped.  As for PET scan, not here in the UK for my situation.  Had clear bone scan, liver CT with contrast, CT of chest, which showed lung nodule which was unchanged after chemo - so onc deemed it a 'red herring'.

    Snorklerr and Chef, thanks for replying.

    JoJo, you have probably gathered that I don't know much about this stuff, but one of the clever ladies may be able to help you.

    Thanks again for taking the time to reply.  I think I will speak to the Breast Care Nurse first and see what she think, and maybe she will book me in with my oncologist.



  • Englishmummy
    Englishmummy Member Posts: 337
    edited April 2016

    Dukip , I have no effects either. My oncologist told me that only 30% of women have noticeable SE's from Tamoxifen: how true that is I have no idea. Of course, we never hear from those that have nothing or very little because they have nothing to complain about - just to clarify I don't mean that in a heartless way, I know many women suffer in a horrible manner with this drug. My oncologist (nor any in my vicinity, I called lots!) doesn't do any testing either - something I found a little disconcerting at first, especially as I had bilateral BC at 41. Thankfully it was stage 1 but none the less it is scary that both 'girls' were behaving badly but there is little follow up. My OB told me that the younger you are the less likely you are to have SE's? She also said that being fit has a large impact on SE's, too.

    I found that understanding that Tamoxifen doesn't really block estrogen production helped me feel more comfortable with no SE's. Instead it modulates or 'sits' in the estrogen receptors in the breast so they can not receive estrogen and therefore cannot grow .Tamoxifen can, however, 'stimulate' other estrogen receptors in the body - in the bone, liver and uterine cells. AI's actually block estrogen production by blocking the enzyme aromatase: the two types of treatment work quite differently. You can read about it here:

    http://www.breastcancer.org/treatment/hormonal/ser...

    http://www.breastcancer.org/treatment/hormonal/aro...

    Never hurts to chat with your oncologist but mine told me to enjoy the ride as it can change down the road. The effects can be accumulative and come on at anytime....or not at all. She told me to remember lots of women would LOVE to be in your position.....pretty sound advice: basically be thankful for small mercies. lol

  • Dukip
    Dukip Member Posts: 40
    edited April 2016

    Thanks EnglishMummy, that's good to hear. I am 45 now, and quite fit, so what your onc said is quite reassuring to me. Maybe I should enjoy the SE free time while I can!


  • MagicalBean
    MagicalBean Member Posts: 362
    edited April 2016

    Hi dukip, I'm 1 year in and no SEs for me either.

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