Tamoxifen, side effects and is it working?

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phoenixrising
phoenixrising Member Posts: 1,508
edited March 2014 in Breast Cancer #1
I've noticed there are a few ladies who are having terrible se from Tamoxifen and are presuming it is working as this is what they have been told by their care providers. I'd just like to bring up a bit of information about this. I too had a terrible time with Tamoxifen and my se were getting worse all the time. At that time info was out about genetic testing for the cyp2D6 gene that metabolizes Tamoxifen to Endoxifen which is the real cancer killer. I had my genes tested and found I was an intermediate metabolizer which means I was not fully metabolizing Tamoxifen. Not all docs are convinced of the research that's been done on this though. But the New York Times did some research and produced an article about it. I was part of that research. Here is the article:

The Evidence Gap

The woman who the article is mainly about spoke about her se with Tamoxifen and they were horrific but she was not metabolizing the drug. Scroll down this page till you see a poster called "yoyojody". She signs off as Jody.


yoyojody

Here is another survivor's view:

~Just wanted to add that my results of being an intermediate to poor metabolizer (from Mayo test) shocked me because I was experiencing severe side effects from the Tamoxifen including fatigue, nausea, sleepless nights, foot/leg pain and so on. So, I think the thought that the severity of side effects predicts the degree to which our bodies are using the drug has not much merit.~

And there are many more. Actually it's all a good read if your interested in tamoxifen and genetics.

There are also women who have hardly any se and have found they are metabolizing wonderfully. I don't want to alarm anyone but I'm just saying that to be sure is to be tested or have a tumour that is actually decreasing, everyone is different. I hope I haven't added to the confusion :)
hugs
jan
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Comments

  • Heatherbelle
    Heatherbelle Member Posts: 1,226 Member
    #2
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    Thank you for posting this.
    Thank you for posting this. I'm going to read the article. I started Tamoxifen a few weeks ago. Other than hot flashes, I really don't have any side effects. I'm a bit quicker to get irritated also. I have not had the test to see how I metabolize it, and my Onc hasn't mentioned anything about it to me
    *hugs*
    Heather
  • phoenixrising
    phoenixrising Member Posts: 1,508
    #3
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    Heatherbelle said:

    Thank you for posting this.
    Thank you for posting this. I'm going to read the article. I started Tamoxifen a few weeks ago. Other than hot flashes, I really don't have any side effects. I'm a bit quicker to get irritated also. I have not had the test to see how I metabolize it, and my Onc hasn't mentioned anything about it to me
    *hugs*
    Heather

    Hi Heather, it took awhile
    Hi Heather, it took awhile for it to really be a problem for me but one thing I can add is that I became very depressed as well and then I split the 20mg and took 10mg in the AM and 10mg in PM. Within days my mood improved and so that was another signal to me that I wasn't metabolizing it properly. I had the test done through Genelex and they sent me swab kit which I sent back to them. It cost me $300 cdn. I then took the results to my docs to their surprise. Then I went on Arimidex and then Aromasin which I will take till 2012. Some insurance companies in the U.S. are paying for the test. There is a ton of info on this through breastcancer.org. Best of luck to you, I hope it works out :)
  • crselby
    crselby Member Posts: 441 Member
    #4
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    Can I get another one?
    And to think I threw away the swab kit after my onc said, "you're experiencing side effects so that shows you are metabolizing it."
    --Connie--
  • phoenixrising
    phoenixrising Member Posts: 1,508
    #5
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    crselby said:

    Can I get another one?
    And to think I threw away the swab kit after my onc said, "you're experiencing side effects so that shows you are metabolizing it."
    --Connie--

    Maybe you are Connie.
    Maybe you are Connie. Everyone is different. I'm sure there are lots of women who are experiencing se and are metabolizing it perfectly. The thing is, no one really knows for sure until they're tested as poor Jody found out. I've had problems with drugs every step of the way so I wasn't surprised by my results. Maybe have another talk with your onc and see what your heart and gut say about it all.

    Sometimes it's so hard to know what to do. It would be nice if all the oncs would agree and keep up to date with the newest research. Some aren't accepting the cyp2D6 research. Some interpret the research differently. The info was relatively new at that time and my docs didn't know anything about it so I'm glad I took it upon myself to do the test. I figured the researchers at the Mayo Clinic were far more knowledgeable about this than anyone here. Another good reason to test is that approx. 25% of all drugs are metabolized through this pathway so if you metabolize too fast or too slow it would be good to know. Especially if you take codeine, metoclopramide (for nausea) or warfarin (coumadin). There are charts and if anyone is interested I can either send or post them.

    hugs
    jan
  • Wolfi
    Wolfi Member Posts: 425
    #6
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    Jan,
    Like you, I am an
    Jan,

    Like you, I am an intermediate metabolizer according to the test I had last year. I had many side effects when I started Tamoxifen and was taken off of it for a while. I have been back on now since February and only have a side effect or two every few days. The last time I saw my doctor he said that many of his collegues were not putting too much faith in the results of the test because they found that some people who were rated poor or intermediate metabalizers actually benefited from being on Tamoxifen (and some rated high metabalizers didn't have great results). I guess just like any of the medications we may all be on - some may work better than others.

    Wolfi
  • New Flower
    New Flower Member Posts: 4,294
    #7
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    Wolfi said:

    Jan,
    Like you, I am an
    Jan,

    Like you, I am an intermediate metabolizer according to the test I had last year. I had many side effects when I started Tamoxifen and was taken off of it for a while. I have been back on now since February and only have a side effect or two every few days. The last time I saw my doctor he said that many of his collegues were not putting too much faith in the results of the test because they found that some people who were rated poor or intermediate metabalizers actually benefited from being on Tamoxifen (and some rated high metabalizers didn't have great results). I guess just like any of the medications we may all be on - some may work better than others.

    Wolfi

    I am a poor metabolizer
    I was on Tamoxifen for 15 months until we discovered that I am a poor metabolizer per my request. My oncologist and the whole cancer institute where I am having my treatments since 2008 DO NOT DO Tamoxifen genetic test because of limited statistical information.
    As for my situation we cannot ignore my poor metabolizer information I had to switched to Zoladex+Arimidex combination 5 months ago and have been experiencing a very, very rough time.
    Both my and I still believe that Tamoxifen did work for me.
    New Flower
  • Noel
    Noel Member Posts: 3,095 Member
    #8
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    Heatherbelle said:

    Thank you for posting this.
    Thank you for posting this. I'm going to read the article. I started Tamoxifen a few weeks ago. Other than hot flashes, I really don't have any side effects. I'm a bit quicker to get irritated also. I have not had the test to see how I metabolize it, and my Onc hasn't mentioned anything about it to me
    *hugs*
    Heather

    Thanks for sharing this with
    Thanks for sharing this with all of us!
  • phoenixrising
    phoenixrising Member Posts: 1,508
    #9
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    Wolfi said:

    Jan,
    Like you, I am an
    Jan,

    Like you, I am an intermediate metabolizer according to the test I had last year. I had many side effects when I started Tamoxifen and was taken off of it for a while. I have been back on now since February and only have a side effect or two every few days. The last time I saw my doctor he said that many of his collegues were not putting too much faith in the results of the test because they found that some people who were rated poor or intermediate metabalizers actually benefited from being on Tamoxifen (and some rated high metabalizers didn't have great results). I guess just like any of the medications we may all be on - some may work better than others.

    Wolfi

    Exactly, which is why I
    Exactly, which is why I don't think we can use se as a basis for effectiveness. I know there are some oncs that don't think the test is a reliable indication for the effectiveness of Tamoxifen, perhaps there is more to be learned and hopefully they will learn it quick. I thought it made great sense though and it's not like it was hypothetical, they used real tumours and checked as to how the women fared. I remember reading somewhere that one of the pharmaceutical companies is trying to create endoxifen. Perhaps those that question the test could have their blood levels checked for endoxifen to be assured that it is working. Thanks for your input Wolfi, it's all food for thought :)
    jan
  • phoenixrising
    phoenixrising Member Posts: 1,508
    #10
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    New Flower said:

    I am a poor metabolizer
    I was on Tamoxifen for 15 months until we discovered that I am a poor metabolizer per my request. My oncologist and the whole cancer institute where I am having my treatments since 2008 DO NOT DO Tamoxifen genetic test because of limited statistical information.
    As for my situation we cannot ignore my poor metabolizer information I had to switched to Zoladex+Arimidex combination 5 months ago and have been experiencing a very, very rough time.
    Both my and I still believe that Tamoxifen did work for me.
    New Flower

    New Flower, if you and your
    New Flower, if you and your onc are convinced it was working for you can you insist on going back on it? Could they do endoxifen blood levels for you? Esp if you're having a hard time on Arimidex. I'm so sorry for your experience, I couldn't do Arimidex, I could barely hold a cup of coffee, Aromasin is much easier in that respect.
    Best wishes to you
    jan
  • phoenixrising
    phoenixrising Member Posts: 1,508
    #11
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    Noel said:

    Thanks for sharing this with
    Thanks for sharing this with all of us!

    Made me feel good seeing
    Made me feel good seeing your name again....and your little dancing kitty :)
  • Noel
    Noel Member Posts: 3,095 Member
    #12
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    phoenixrising said:

    Made me feel good seeing
    Made me feel good seeing your name again....and your little dancing kitty :)

    Thanks! I am not on a lot
    Thanks! I am not on a lot anymore, but, still check in every now and then.

    Great seeing your real kitty too! Hope you are doing well!


    And, Happy Thanksgiving phoenixrising!
  • New Flower
    New Flower Member Posts: 4,294
    #13
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    phoenixrising said:

    New Flower, if you and your
    New Flower, if you and your onc are convinced it was working for you can you insist on going back on it? Could they do endoxifen blood levels for you? Esp if you're having a hard time on Arimidex. I'm so sorry for your experience, I couldn't do Arimidex, I could barely hold a cup of coffee, Aromasin is much easier in that respect.
    Best wishes to you
    jan

    I am taken off Arimidex
    Jan
    Thank you for caring about me. Yesterday I saw my oncologist. She took me off Arimidex, however I still got my Zoladex shot. Hopefully I will see some improvement by the end of December. For now I am coping with Zoladex side effects.

    Happy Thanksgiving to all.
    New Flower
  • DebbyM
    DebbyM Member Posts: 3,289 Member
    #14
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    New Flower said:

    I am taken off Arimidex
    Jan
    Thank you for caring about me. Yesterday I saw my oncologist. She took me off Arimidex, however I still got my Zoladex shot. Hopefully I will see some improvement by the end of December. For now I am coping with Zoladex side effects.

    Happy Thanksgiving to all.
    New Flower

    So, you are not on any
    So, you are not on any hormone therapy now New Flower? I hope you do see improvement by next month.

    Hugs, Debby
  • New Flower
    New Flower Member Posts: 4,294
    #15
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    DebbyM said:

    So, you are not on any
    So, you are not on any hormone therapy now New Flower? I hope you do see improvement by next month.

    Hugs, Debby

    Zoladex is anti-estrogen therapy too
    Hi Debby,
    Zoladex is a hormonal/anti-estrogen therapy too.. For the past 5 months I have been having combination of two drugs: Zoladex and Arimidex. It was too rough, now I have been left on one. I had my shot on 23rd, still do not feel well.
    New Flower
  • gagee
    gagee Member Posts: 332
    #16
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    phoenixrising said:

    Exactly, which is why I
    Exactly, which is why I don't think we can use se as a basis for effectiveness. I know there are some oncs that don't think the test is a reliable indication for the effectiveness of Tamoxifen, perhaps there is more to be learned and hopefully they will learn it quick. I thought it made great sense though and it's not like it was hypothetical, they used real tumours and checked as to how the women fared. I remember reading somewhere that one of the pharmaceutical companies is trying to create endoxifen. Perhaps those that question the test could have their blood levels checked for endoxifen to be assured that it is working. Thanks for your input Wolfi, it's all food for thought :)
    jan

    I am on the arimidex and
    I am on the arimidex and have a lot of side effects.... hot and cold flashes, weight gain, water retention, mood swings and 2 days ago I broke out in a rash on the bottom on my legs and wrists. Don't know where that came from. Nothing seems to cut the itching and of course this is Friday night. May have to go into Urgent Care in the morning. It is spreading. Any one else had this happen or is it not cancer related? Oh, and I just got over e-coli from a dirty radiation room.

    Thank You,
    Diana
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #17
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    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
  • phoenixrising
    phoenixrising Member Posts: 1,508
    #18
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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

    I know what you mean. I had
    I know what you mean. I had them really bad. There is thread dedicated to that topic. This is the link: Tamoxifen and leg cramps
    Hope you find something in here that helps.
    hugs
    jan
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #19
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    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..
  • Boppy_of_6
    Boppy_of_6 Member Posts: 1,138
    #20
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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..

    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
  • vjcrocker
    vjcrocker Member Posts: 11
    #21
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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..

    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.

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