Going to switch from Arimidex to Tamoxifen

scout5000
scout5000 Member Posts: 94 Member
edited March 2014 in Breast Cancer #1
Saw onco today. My GP, rheumatologist and onco all decided that I need to switch from Arimidex to Tamoxifen due to osteoporosis and constant, intense pain in back and many joints. I've been on Arimidex for 17 months of torture. So the doc thinks that Tamox will prevent my need for osteoporosis meds, which cause additional pain, and will deal with helping to prevent recurrence (although not as effective as Arimidex). Then he drops the bomb that when you switch to Tamoxifen, a totally different drug than Arimidex, you need to start counting your 5 years on the meds over again. Meaning I have 5 more years to go. I started crying and he said I may not have side effects, so wait and see. I told him I cannot possibly do one more second past the original 5 year goal, I can't take the pain and inability to have a normal life. I'm going off all drugs for a month, doc said a week, but I say a month, it is my body. Then I'll start on Tamoxifen and see what happens. A bad day. I was going to say a very bad day, but then we have all had much worse days than this, it's all relative now. Thanks for listening.
Scout

Comments

  • smalldoggroomer
    smalldoggroomer Member Posts: 1,184
    #2
    I don't blame you for
    I don't blame you for wanting a month off. I will pray for you and hope that you have no pain on the Tamoxifen. This will be a better year. Did the Arimidex cause the osteoporosis? Or was this a on going condition. I will be on it after my herceptin.
    Take care Kay,
  • pattimc
    pattimc Member Posts: 431
    #3
    I was switched,too
    Not too long ago actually. I had put in about 18 months on Tamoxifen and 6 weeks on Arimedex...couldn't take the pain! My onco put me back on Tamoxifen and specifically said I would only have 3 1/2 more years. I would question your onco on that....doesn't seem right to me. The protocol is 5 yrs either drug or a combination of the two. And you're right....it is YOUR body! For what it's worth, I am feeling much better on Tamoxifen. I hope you will too!


    My best to you,


    Patti
  • gagee
    gagee Member Posts: 332
    #4
    pattimc said:

    I was switched,too
    Not too long ago actually. I had put in about 18 months on Tamoxifen and 6 weeks on Arimedex...couldn't take the pain! My onco put me back on Tamoxifen and specifically said I would only have 3 1/2 more years. I would question your onco on that....doesn't seem right to me. The protocol is 5 yrs either drug or a combination of the two. And you're right....it is YOUR body! For what it's worth, I am feeling much better on Tamoxifen. I hope you will too!


    My best to you,


    Patti

    Do you have the side effects
    Do you have the side effects like arimidex? I have been off it for 5-6 weeks and still have all the side effects you can think of. Seeing onc. on Friday and hope she can help me with all of this.

    thank You, Diana
  • Miss Murphy
    Miss Murphy Member Posts: 302
    #5
    Me Too!
    I also changed from Arimidex to Tamox. I had started off on Femara and had problems, same with Arimidex. Tamox is somewhat better. I also was under the impression that it was 5 years total with one of the drugs or a combination. I don't think I will continue on the Tamox after my total of 5 years are up no matter what! I haven't liked the side effects from any of these drugs, it's only the Tamox that's more doable than the other two. Hang in there - I know what you are going thru - and good luck.

    Hugs, Sally
  • cahjah75
    cahjah75 Member Posts: 2,631
    #6
    Scout
    it does seem never ending. I saw my onc today and he had already written out a script for Arimidex before we had talked about it. My sister took Arimidex 8 years ago with no side effects and another sister took Tamoxifen 9 years ago and had a uterine polyp removed and a recurrence of DCIS in other breast 2 months ago. My onc said Arimidex is more effective than Tamoxifen and to prevent osteoporosis (which my 2 youngest sisters have) with other options. I have severe osteoarthritis and told him I didn't want more bone pain. He said to call him if I notice an increase in pain. I don't blame you for wanting a month pill free. The thought of taking these pills for 5 years sounds like forever. But it's one more thing in preventing the return of cancer.
    {{hugs}} Char
  • carkris
    carkris Member Posts: 4,553 Member
    #7
    cahjah75 said:

    Scout
    it does seem never ending. I saw my onc today and he had already written out a script for Arimidex before we had talked about it. My sister took Arimidex 8 years ago with no side effects and another sister took Tamoxifen 9 years ago and had a uterine polyp removed and a recurrence of DCIS in other breast 2 months ago. My onc said Arimidex is more effective than Tamoxifen and to prevent osteoporosis (which my 2 youngest sisters have) with other options. I have severe osteoarthritis and told him I didn't want more bone pain. He said to call him if I notice an increase in pain. I don't blame you for wanting a month pill free. The thought of taking these pills for 5 years sounds like forever. But it's one more thing in preventing the return of cancer.
    {{hugs}} Char

    I am on tamoxifen and do not
    I am on tamoxifen and do not have too bad of side effects. hot flashes at night mostly. I dreaded taking it too. I have read on here of women switching and having great relief in their symptoms. remember keeping cancer away is really important.
  • scout5000
    scout5000 Member Posts: 94 Member
    #8
    smalldoggroomer said:

    I don't blame you for
    I don't blame you for wanting a month off. I will pray for you and hope that you have no pain on the Tamoxifen. This will be a better year. Did the Arimidex cause the osteoporosis? Or was this a on going condition. I will be on it after my herceptin.
    Take care Kay,

    Osteo
    The Arimidex did not cause the osteoporosis. Before I started on Arimidex I requested a bone density test and that's when I found out I had it. Since the Arimidex can exacerbate the osteo I needed to take Fosamax or something to help out. The docs say that with Tamoxifen I won't have to take Fosamax. Thanks for your support.
    Scout
  • scout5000
    scout5000 Member Posts: 94 Member
    #9
    Thanks everybody for your
    Thanks everybody for your information and support. I am sticking with the total of 5 years on these meds, unless the Tamoxifen has no side effects. My doctor did say that Tamoxifen had a few percent higher chance of recurrence than AI meds.
    Scout
  • dyaneb123
    dyaneb123 Member Posts: 950
    #10
    carkris said:

    I am on tamoxifen and do not
    I am on tamoxifen and do not have too bad of side effects. hot flashes at night mostly. I dreaded taking it too. I have read on here of women switching and having great relief in their symptoms. remember keeping cancer away is really important.

    I was on Arimidex for over a
    I was on Arimidex for over a year and my Onc. just switched me to Tamoxifin. I think it has helped with the joint pain. One interesting thing he told me as I do have to strengthen
    my bones, is that the Tamoxifin is a better drug for that...in fact I have been getting an infusion of Zometa every 6 months, and he says that with the Tamoxifin I won't need to do that anymore...also he told me that recent research suggests that 4 infusions of Zometa can decrease the chance of reccurance by a big percentage! I don't remember exactly what the percentage was, so I won't give a number, but it was very impressive. I've had 3 infusions and if he feels that this study is sound, he'll call me back in for the 4th. Anyone worried about osteoporosis should ask their Onc. about this. So, as far as having to keep taking it, I think of it as an antiosteoporosis drug instead ofjust an anti cancer drug, and hopefully it will do the job for both.
    Dee
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #11
    I wish you luck
    with med change...I am on tamoxifen now for about 18mths...really NO SIDE effects other then thickening of uterus (but so far 2 ultra sounds and 2 D & C every ok) night sweats of course but no other side effects...I hope same for you
  • DianeBC
    DianeBC Member Posts: 3,881 Member
    #12
    scout5000 said:

    Thanks everybody for your
    Thanks everybody for your information and support. I am sticking with the total of 5 years on these meds, unless the Tamoxifen has no side effects. My doctor did say that Tamoxifen had a few percent higher chance of recurrence than AI meds.
    Scout

    Good luck with Tamox!
    Good luck with Tamox! Praying for no side effects for you!


    Hugs, Diane
  • Megan M
    Megan M Member Posts: 3,000
    #13
    smalldoggroomer said:

    I don't blame you for
    I don't blame you for wanting a month off. I will pray for you and hope that you have no pain on the Tamoxifen. This will be a better year. Did the Arimidex cause the osteoporosis? Or was this a on going condition. I will be on it after my herceptin.
    Take care Kay,

    We are always here to
    We are always here to listen. Praying for you also.


    Hugs, Megan
  • mvannie
    mvannie Member Posts: 16
    #14
    Switching to tamoxifen
    When I read your post I felt like crying just to know someone else is going throught the same problems as I have. Chemo ended in July. So far I have tried all three aromatase inhibitors.
    I haven't taken any in a month because I was so sick I could not work. The aromasin gave me a blood clot in my leg. While on the femara I had a migrane that included losing part of my vision. I have been retrying the arimadex over and over but it just makes me sick.
    I am beating my self up because I feel like if the cancer comes back it will be my fault.
    I think I will ask for the tamoxifen but I will still feel like I am failing not taking the aromatase inhibitors. I wish something new would come out soon. Sorry to ramble but I have been depressed about this lately. Thanks Annie
  • scout5000
    scout5000 Member Posts: 94 Member
    #15
    mvannie said:

    Switching to tamoxifen
    When I read your post I felt like crying just to know someone else is going throught the same problems as I have. Chemo ended in July. So far I have tried all three aromatase inhibitors.
    I haven't taken any in a month because I was so sick I could not work. The aromasin gave me a blood clot in my leg. While on the femara I had a migrane that included losing part of my vision. I have been retrying the arimadex over and over but it just makes me sick.
    I am beating my self up because I feel like if the cancer comes back it will be my fault.
    I think I will ask for the tamoxifen but I will still feel like I am failing not taking the aromatase inhibitors. I wish something new would come out soon. Sorry to ramble but I have been depressed about this lately. Thanks Annie

    Annie,
    I am sorry you are
    Annie,
    I am sorry you are going through this also, but like you said it made me feel better to know that someone else has the same problem. I went off Arimidex for the last two weeks and I had quit Fosamax two weeks before that. I have 75% less pain today. It made me feel really good to know that it is the Arimidex, plus Fosamax. I started Tamoxifen two days ago. My rheumatologist said that if I take tamoxifen instead of Arimidex, I won't have to take anything for osteoporosis. I think you should ask your doc about switching and see what s/he says. I'll post in a few weeks after I get the Tamox in my system. Good luck to you, thanks for posting.
  • mgm42
    mgm42 Member Posts: 491 Member
    #16
    You and I have same story...
    I went through 23 months of pain and misery on Arimidex. Told my onc I'd take my chances and stop all hormonal therapy. She switched me to tamoxifen and told me that the full 5 year clock was running again. The tamoxifen is like a simple daily vitamin compared to Arimidex. For a while I thought I was having cramping in all of my skeletal muscles due to the tamoxifen, but I was WRONG. It was the diuretic that I took for high blood pressue. Since switching my BP meds, my tamoxifen and I are best friends. No real side effects to mention -- except some occasional flushing. That's about it. I hope you have good luck with tamoxifen. I know I'm so glad that I'm on it. One year down and 4 more to go. Hugs, Marilynn

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