Finished 5 years of Tamoxifen. HELP!

LivingLifeNow
LivingLifeNow Member Posts: 68
edited February 2015 in Hormonal Therapy - Before, During, and After

Hi, I just finished 5 years of Tamoxifen and would like to do a little statistical analysis to assist me in understanding what happens to our bodies once we stop Tamoxifen. If you, too, have finished 5 years of Tamoxifen, please copy/paste my questions and answers below into a new POST A REPLY box and answer the questions according to how they apply to you. Thanks in advance to all of you who respond. I think this information may prove very helpful to everyone.

  • 1.At what age did you start taking Tamoxifen? 49
  • 2.At what age did you stop taking Tamoxifen? 54
  • 3.Currently, how long have you been off Tamoxifen? 12 weeks
  • 4.Did you have chemo? No
  • 5.Did you go on another anti-hormonal treatment after finishing Tamoxifen? No
  • 6.If "yes" to #5, what kind of medication did you take?
  • 7.Hormonal status prior to starting Tamoxifen:
    Pre-menopausal? Peri-menopausal? Post-menopausal? I was Peri-menopausal
  • 8.Hormonal status after stopping Tamoxifen:
    Pre-menopausal? Peri-menopausal? Post-menopausal? I thought I was Post-menopausal, but just had a period. Not sure of my current status. Will be tested soon.
  • 9.If you were still having periods when you started Tamoxifen, were they:
    Regular? Irregular? Stopped immediately? Mine were irregular, then stopped partway through treatment.
  • 10.Did your periods stop partway through treatment? Yes
  • 11.If "yes" to #10, how long were you on Tamoxifen when they stopped? 3 years
  • 12.If your period stopped while taking Tamoxifen, did you have 1 or more periods after stopping it? Yes
  • 13.If "yes" to #12, how long after stopping it did you have your first period? 10 weeks
  • 14.Were you on any other prescription medication while taking Tamoxifen? No
  • 15.If "yes" to #14, what medication(s) were you on?
  • 16.Did you have thickened endometrial lining while on Tamoxifen? Yes
  • 17.If "yes" to #16, how many months into your treatment was this diagnosed? 18 months
  • 18.If "yes" to #16, after stopping Tamoxifen, did your lining go back to normal size? I am not sure yet. Will be tested soon.
  • 19.If there is any additional information you think would be helpful, please type it here in #19.

Did you know that Tamoxifen was originally used as a contraceptive in the early 60s? I guess the estrogen blocker thing…. Anyway, it turned out that women were conceiving right and left. In fact, they determined that Tamoxifen increases egg production—lots! Well, it is no longer used as a contraceptive, but is still being used to treat infertility. I just wonder how all of this ties into our menopausal status when we start this drug and how it impacts our periods and menopausal status once we stop!

I do understand that there are many other factors that may be involved, but I thought it best to stick to the basics and see if anything can be determined with a limited number of questions.

Thanks for all of your help with this survey. I will post results and conclusions (if any) once I gather all of the data.

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Comments

  • mjjones453
    mjjones453 Member Posts: 26
    edited February 2015

    Bump! ( I am so close) Will see my Oncologist in early March)

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  • LivingLifeNow
    LivingLifeNow Member Posts: 68
    edited February 2015

    mjjones,

    Oh, you are getting close! Do you let me know how your body reacts when you go off tamoxifen. It's a very interesting process.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2015
    • 1.At what age did you start taking Tamoxifen? 52
    • 2.At what age did you stop taking Tamoxifen? will be stopping in a week
    • 3.Currently, how long have you been off Tamoxifen? NA
    • 4.Did you have chemo? Yes
    • 5.Did you go on another anti-hormonal treatment after finishing Tamoxifen? will be put on Femara
    • 6.If "yes" to #5, what kind of medication did you take? Femara
    • 7.Hormonal status prior to starting Tamoxifen: post-menopausal
      Pre-menopausal? Peri-menopausal? Post-menopausal? I was Peri-menopausal
    • 8.Hormonal status after stopping Tamoxifen: Post Menopausal
      Pre-menopausal? Peri-menopausal? Post-menopausal? I thought I was Post-menopausal, but just had a period. Not sure of my current status. Will be tested soon.
    • 9.If you were still having periods when you started Tamoxifen, were they: NA
      Regular? Irregular? Stopped immediately? Mine were irregular, then stopped partway through treatment.
    • 10.Did your periods stop partway through treatment? NA
    • 11.If "yes" to #10, how long were you on Tamoxifen when they stopped? NA
    • 12.If your period stopped while taking Tamoxifen, did you have 1 or more periods after stopping it? NA
    • 13.If "yes" to #12, how long after stopping it did you have your first period? NA
    • 14.Were you on any other prescription medication while taking Tamoxifen? No
    • 15.If "yes" to #14, what medication(s) were you on? NA
    • 16.Did you have thickened endometrial lining while on Tamoxifen? No clue
    • 17.If "yes" to #16, how many months into your treatment was this diagnosed? ??
    • 18.If "yes" to #16, after stopping Tamoxifen, did your lining go back to normal size? I am not sure yet. Will be tested soon. No clue
    • 19.If there is any additional information you think would be helpful, please type it here in #19.
    Hope this helps !
    Shelly
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2015
    • 1.At what age did you start taking Tamoxifen? 52
    • 2.At what age did you stop taking Tamoxifen? will be stopping in a week
    • 3.Currently, how long have you been off Tamoxifen? NA
    • 4.Did you have chemo? Yes
    • 5.Did you go on another anti-hormonal treatment after finishing Tamoxifen? will be put on Femara
    • 6.If "yes" to #5, what kind of medication did you take? Femara
    • 7.Hormonal status prior to starting Tamoxifen: post-menopausal
      Pre-menopausal? Peri-menopausal? Post-menopausal? I was Peri-menopausal
    • 8.Hormonal status after stopping Tamoxifen: Post Menopausal
      Pre-menopausal? Peri-menopausal? Post-menopausal? I thought I was Post-menopausal, but just had a period. Not sure of my current status. Will be tested soon.
    • 9.If you were still having periods when you started Tamoxifen, were they: NA
      Regular? Irregular? Stopped immediately? Mine were irregular, then stopped partway through treatment.
    • 10.Did your periods stop partway through treatment? NA
    • 11.If "yes" to #10, how long were you on Tamoxifen when they stopped? NA
    • 12.If your period stopped while taking Tamoxifen, did you have 1 or more periods after stopping it? NA
    • 13.If "yes" to #12, how long after stopping it did you have your first period? NA
    • 14.Were you on any other prescription medication while taking Tamoxifen? No
    • 15.If "yes" to #14, what medication(s) were you on? NA
    • 16.Did you have thickened endometrial lining while on Tamoxifen? No clue
    • 17.If "yes" to #16, how many months into your treatment was this diagnosed? ??
    • 18.If "yes" to #16, after stopping Tamoxifen, did your lining go back to normal size? I am not sure yet. Will be tested soon. No clue
    • 19.If there is any additional information you think would be helpful, please type it here in #19.

    Hope this helps !

    Shelly

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2015

    I can't wait to come back here....one year to go and I am done with Tamoxifen!

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  • LivingLifeNow
    LivingLifeNow Member Posts: 68
    edited February 2015

    Shelly,

    Thanks so much. I can't wait to see if there are any common factors in all of this

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  • Lojo
    Lojo Member Posts: 303
    edited February 2015


    Great thread. I can't fill in much of the info, as I'm only a little more than a year into my (probably) 10 yr course of tamoxifen

    I did want to ask about the menstrual irregularities and how endometrial thickness was evaluated.

    I was 41 a dx, now 42. Definitely pre-menopausal (and a short 25-26 day cycle since my late 30s). No chemo. Initially I had a little irregularity (40 day interval twice) but had been regular (30 day interval for 10 months). I'm  now heading into month three with no period. My MO said it wasn't unusual (I saw him a few weeks ago when it had been about 6wks, now up to 8). Any ideas on when I need to see my ob/gyn? I

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  • dltnhm
    dltnhm Member Posts: 873
    edited February 2015

    I have not completed Tamoxifen but wonder if your MO discussed the studies regarding 10 years on Tamoxifen?

    http://www.breastcancer.org/research-news/10-years-of-hormonal-therapy-recommended

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  • LivingLifeNow
    LivingLifeNow Member Posts: 68
    edited February 2015

    dltnhm,

    Yes, my ONC did discuss the option of doing 10 years on tamoxifen. However, the 10 year study was on women from all categories of BC--all stages, all lymph node statuses. There was actually a study done some years back on extended tamoxifen use in women who are lymph node negative and stage 1 or 2. They found that after 7 years on tamoxifen these women had an increased risk of recurrence, so stopped the study. That's where I am, so I'm not interested in increasing my risk of uterine cancer, cataracts, and just plain feeling horrible 24/7 because it helped some women--mostly those with higher stages and positive lymph nodes.

    I often wonder if, when a woman drops out of a study, do they still follow up on her results? I believe approximately 50% of the women in the large, current 10-year study dropped out or died of other causes, etc. How does all of this factor in? Maybe the women who can tolerate the drug better stay in. Those that can't tolerate it well drop out. What are the stats on those who drop out--better or worse? Statistics are statistics! I believe that 5 years on tamoxifen is right for me. I believe that 10 years on tamoxifen is wrong for me! In fact, I think that 4 years would have been optimal for me. My last year I had more symptoms and problems. Who know? Maybe we all have an optimal number of years. Wouldn't it be nice to know exactly what that is for each of us?

    Good luck with your tamoxifen decision!

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  • dltnhm
    dltnhm Member Posts: 873
    edited February 2015

    Thanks for your lengthy response. I'm on my phone - so I'll save thorough for later.

    However, I have already made my decision (with my MO and extensive research) regarding Tamoxifen and AIs. I will remain on Tamoxifen until my FSH, Estradiol, and LH truly prove post menopausal & then I will switch to an AI. Some days I'm hoping for 8 years all together and other days I'm hoping for 10.

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