Tamoxifen, side effects and is it working?

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  • phoenixrising
    phoenixrising Member Posts: 1,508
    #22
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    Boppy_of_6 said:

    I had the cyp2D6 blood test
    I had the cyp2D6 blood test and all was well for me. I have been on Tamoxifen for a little over 4 mos. and worst se is the hot flashes, not enjoyable but not terrible either. I was moody and irittable the first couple of months but that has gotten better.
    I have a friend though who showed to be a poor metabolizer and her Onc. wanted her to take it anyway. She ended up switching Drs. and the new Onc. did not put her on it. Thanks for bringing this up. God Bless
    (((Hugs))) Janice

    I have to wonder if that's
    I have to wonder if that's the decision he would've made for himself...or his wife. He could have checked her endoxifen levels to confirm his assumption that it was working. Glad she moved on, geesh, you really have to be your own advocate sometimes!
    hugs
    jan
  • phoenixrising
    phoenixrising Member Posts: 1,508
    #23
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    Boppy_of_6 said:

    I had the cyp2D6 blood test
    I had the cyp2D6 blood test and all was well for me. I have been on Tamoxifen for a little over 4 mos. and worst se is the hot flashes, not enjoyable but not terrible either. I was moody and irittable the first couple of months but that has gotten better.
    I have a friend though who showed to be a poor metabolizer and her Onc. wanted her to take it anyway. She ended up switching Drs. and the new Onc. did not put her on it. Thanks for bringing this up. God Bless
    (((Hugs))) Janice

    sorry
    sorry
  • phoenixrising
    phoenixrising Member Posts: 1,508
    #24
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    Boppy_of_6 said:

    I had the cyp2D6 blood test
    I had the cyp2D6 blood test and all was well for me. I have been on Tamoxifen for a little over 4 mos. and worst se is the hot flashes, not enjoyable but not terrible either. I was moody and irittable the first couple of months but that has gotten better.
    I have a friend though who showed to be a poor metabolizer and her Onc. wanted her to take it anyway. She ended up switching Drs. and the new Onc. did not put her on it. Thanks for bringing this up. God Bless
    (((Hugs))) Janice

    how did I manage to do this
    how did I manage to do this 4x?
  • phoenixrising
    phoenixrising Member Posts: 1,508
    #25
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    Boppy_of_6 said:

    I had the cyp2D6 blood test
    I had the cyp2D6 blood test and all was well for me. I have been on Tamoxifen for a little over 4 mos. and worst se is the hot flashes, not enjoyable but not terrible either. I was moody and irittable the first couple of months but that has gotten better.
    I have a friend though who showed to be a poor metabolizer and her Onc. wanted her to take it anyway. She ended up switching Drs. and the new Onc. did not put her on it. Thanks for bringing this up. God Bless
    (((Hugs))) Janice

    enough already LOL

    enough already LOL
  • phoenixrising
    phoenixrising Member Posts: 1,508
    #26
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    vjcrocker said:

    Tamoxifen Side Effects
    I have been on Tamoxifen for a year now. I'm 45 now, the Chemo put me into Menopause at 43 and the Tamoxifen has kept me there. I have mild to mod hot flashes. I had my first inner pelvic ultrasound in Oct and my lining is 8mm, twice of what it is suppose to be. They did a Biopsy and they said they found no cancer cells but want to do another ultrasound on Friday. I'm wondering if I should just have everything removed so I don't have to worry about it.

    I was on it for about 1
    I was on it for about 1 1/2yrs and I often got crampy, like I was going to menstruate and I was already post menopausal. You've got tough decisions to make. Maybe your onc will give you some good advice. Good luck to you on whatever you choose.
    hugs
    jan
  • phoenixrising
    phoenixrising Member Posts: 1,508
    #27
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    disneyfan2008 said:

    no real side effects to speak of
    I have had little side effects and ONE GOOD/ Great good point...while on Tamoxifen for just about year and half my Ulcertive COlitis (I have had 18 yrs) is in total remission..can eat anything i want...(very restricted diet prior)-everything is great..so i'll take it while it lasts...when I go off it NOT sure if it will flare again..

    Wow, how cool is that!! I
    Wow, how cool is that!! I wonder why that is?? Whatever, bonus to you!
  • crselby
    crselby Member Posts: 441 Member
    #28
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    vjcrocker said:

    Tamoxifen Side Effects
    I have been on Tamoxifen for a year now. I'm 45 now, the Chemo put me into Menopause at 43 and the Tamoxifen has kept me there. I have mild to mod hot flashes. I had my first inner pelvic ultrasound in Oct and my lining is 8mm, twice of what it is suppose to be. They did a Biopsy and they said they found no cancer cells but want to do another ultrasound on Friday. I'm wondering if I should just have everything removed so I don't have to worry about it.

    How much is too much and is it worth it?
    I've been on Tamoxifen for just over a year. Like you, I started having the pelvic ultrasounds, first when I started on the drug, then again last month. The thickening in part of my uterus turned out to be 2 polyps. I had them removed almost 2 weeks ago and am awaiting the pathology report on them. The endometrial biopsy she did 4 weeks ago showed every thing normal.

    I would not even consider telling them to take out my uterus so that I can take this drug, Tamoxifen. I will have multiple tests (expensive) to keep an eye on things but just because I won't be bearing any more children does not mean my uterus is expendable. Would a man think that way of his testicles if he was finished producing babies? I doubt it.

    And then there's the expense of taking another drug to counteract the hot flashes that Tamoxifen has caused.

    This damm Tamoxifen had better be worth all this!
    ~~Connie~~
  • Angie2U
    Angie2U Member Posts: 2,991
    #29
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    disneyfan2008 said:

    no real side effects to speak of
    I have had little side effects and ONE GOOD/ Great good point...while on Tamoxifen for just about year and half my Ulcertive COlitis (I have had 18 yrs) is in total remission..can eat anything i want...(very restricted diet prior)-everything is great..so i'll take it while it lasts...when I go off it NOT sure if it will flare again..

    Thanks for the links and the
    Thanks for the links and the good information!
  • Angie2U
    Angie2U Member Posts: 2,991
    #30
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    phoenixrising said:

    enough already LOL

    enough already LOL

    LOL!

    LOL!
  • Kylez
    Kylez Member Posts: 3,761 Member
    #31
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    Boppy_of_6 said:

    I had the cyp2D6 blood test
    I had the cyp2D6 blood test and all was well for me. I have been on Tamoxifen for a little over 4 mos. and worst se is the hot flashes, not enjoyable but not terrible either. I was moody and irittable the first couple of months but that has gotten better.
    I have a friend though who showed to be a poor metabolizer and her Onc. wanted her to take it anyway. She ended up switching Drs. and the new Onc. did not put her on it. Thanks for bringing this up. God Bless
    (((Hugs))) Janice

    I have delayed going on
    I have delayed going on tamox for fear of the side effects, and, I am not convinced that it is worth taking period.


    I wish all of you good luck on it and thanks for all of this information.


    Hugs, Kylez
  • vjcrocker
    vjcrocker Member Posts: 11
    #32
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    crselby said:

    How much is too much and is it worth it?
    I've been on Tamoxifen for just over a year. Like you, I started having the pelvic ultrasounds, first when I started on the drug, then again last month. The thickening in part of my uterus turned out to be 2 polyps. I had them removed almost 2 weeks ago and am awaiting the pathology report on them. The endometrial biopsy she did 4 weeks ago showed every thing normal.

    I would not even consider telling them to take out my uterus so that I can take this drug, Tamoxifen. I will have multiple tests (expensive) to keep an eye on things but just because I won't be bearing any more children does not mean my uterus is expendable. Would a man think that way of his testicles if he was finished producing babies? I doubt it.

    And then there's the expense of taking another drug to counteract the hot flashes that Tamoxifen has caused.

    This damm Tamoxifen had better be worth all this!
    ~~Connie~~

    Dr's Visit
    Well, I had another Ultrasound Friday and my Dr. said that the lining has increased from 8mm to 13mm in 6 weeks. He also saw a small mass so I will be going in agian bright and early this Friday (5:45am) and have a Hysteroscopy. God willing it will only be a Benign Polyp.
  • phoenixrising
    phoenixrising Member Posts: 1,508
    #33
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    vjcrocker said:

    Dr's Visit
    Well, I had another Ultrasound Friday and my Dr. said that the lining has increased from 8mm to 13mm in 6 weeks. He also saw a small mass so I will be going in agian bright and early this Friday (5:45am) and have a Hysteroscopy. God willing it will only be a Benign Polyp.

    Really sorry to hear that! Hope it all goes well!
    hugs
    jan
  • crselby
    crselby Member Posts: 441 Member
    #34
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    vjcrocker said:

    Dr's Visit
    Well, I had another Ultrasound Friday and my Dr. said that the lining has increased from 8mm to 13mm in 6 weeks. He also saw a small mass so I will be going in agian bright and early this Friday (5:45am) and have a Hysteroscopy. God willing it will only be a Benign Polyp.

    Polyps
    Hi vj. Don't be too worried. Two weeks ago I had the 2 polyps removed that were showing up as the 'thickening' of my uterine lining. No sweat. The path report today showed all was benign. Yay! I got a break. I'm so happy it wasn't something worse. It wsa just expensive and time consuming. I'd like to send the bill to my oncologist who insists the benefits of Tamoxifen outweigh the risks.
    ~~Connie~~
  • Ritzy
    Ritzy Member Posts: 4,381 Member
    #35
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    crselby said:

    Polyps
    Hi vj. Don't be too worried. Two weeks ago I had the 2 polyps removed that were showing up as the 'thickening' of my uterine lining. No sweat. The path report today showed all was benign. Yay! I got a break. I'm so happy it wasn't something worse. It wsa just expensive and time consuming. I'd like to send the bill to my oncologist who insists the benefits of Tamoxifen outweigh the risks.
    ~~Connie~~

    Congrats on the good news
    Congrats on the good news Connie! Benign..our favorite word!


    Sue :)
  • candacemc
    candacemc Member Posts: 21
    #36
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    Aha! I can't wait to see my onc this week
    Well, I just began Tamox and I'm having the night sweats and the weird crampy feeling like I'm starting my period, when I'm not. My periods have gone from 2 days (all my life this has been my pattern) to horrible cramps and a lot of bleeding. I meet with my onc. this Thursday and I cannot wait to see where we go from here. He told me that with Tamox there is a 30% chance of developing uterine cancer but that he would monitor this very closely and that if/when something developed, my uterus would be easily removed. Easy for him to say!!! I have not seen the 30% statistic anywhere else, but I'm new to this whole scene. I'm seeing highly recommended docs in the Houston Med center. So far, I've been pleased?
  • New Flower
    New Flower Member Posts: 4,294
    #37
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    vjcrocker said:

    Dr's Visit
    Well, I had another Ultrasound Friday and my Dr. said that the lining has increased from 8mm to 13mm in 6 weeks. He also saw a small mass so I will be going in agian bright and early this Friday (5:45am) and have a Hysteroscopy. God willing it will only be a Benign Polyp.

    Good luck on Friday
    VJcrocker,
    Wishing you good luck and clean pathology report.
  • New Flower
    New Flower Member Posts: 4,294
    #38
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    candacemc said:

    Aha! I can't wait to see my onc this week
    Well, I just began Tamox and I'm having the night sweats and the weird crampy feeling like I'm starting my period, when I'm not. My periods have gone from 2 days (all my life this has been my pattern) to horrible cramps and a lot of bleeding. I meet with my onc. this Thursday and I cannot wait to see where we go from here. He told me that with Tamox there is a 30% chance of developing uterine cancer but that he would monitor this very closely and that if/when something developed, my uterus would be easily removed. Easy for him to say!!! I have not seen the 30% statistic anywhere else, but I'm new to this whole scene. I'm seeing highly recommended docs in the Houston Med center. So far, I've been pleased?

    1% uterine cancer
    You are mistaken. Clinical studies have shown that 1% patients taking Tamoxifen develop a uterine cancer.
  • New Flower
    New Flower Member Posts: 4,294
    #39
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    crselby said:

    Polyps
    Hi vj. Don't be too worried. Two weeks ago I had the 2 polyps removed that were showing up as the 'thickening' of my uterine lining. No sweat. The path report today showed all was benign. Yay! I got a break. I'm so happy it wasn't something worse. It wsa just expensive and time consuming. I'd like to send the bill to my oncologist who insists the benefits of Tamoxifen outweigh the risks.
    ~~Connie~~

    Connie Congratulations
    good news
  • jnl
    jnl Member Posts: 3,869 Member
    #40
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    disneyfan2008 said:

    cramps
    Since on Tamoxifen I get wicked leg and foot cramps in the middle of the night..my oncolo said many have the same complaint..other then that no other sie effects to speak of

    This will sound strange,
    This will sound strange, but, it works. Put a bar of soap by your feet when you go to bed. It seems to make the leg and foot cramps go away. I even read it on here before, but, a girlfriend told me. Can't hurt to try it.

    Leeza
  • candacemc
    candacemc Member Posts: 21
    #41
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    New Flower said:

    1% uterine cancer
    You are mistaken. Clinical studies have shown that 1% patients taking Tamoxifen develop a uterine cancer.

    I wrote that fact down, but
    I wrote that fact down, but it's obviously not right... Cannot wait to see my doc tomorrow!!! I'm hoping a lot of what I "heard" was incorrect and I was just medicated and frightened. That HAS to be what happened. I had my mother and sister with me, every step of the way but did not take them back to consult with any of the docs. I'm six mos. in and have many questions.

    This board with all it's information and support has been the most positive thing in my journey, so far. Thank you.

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