This may be a dumb question, buttttttttt

jnl
jnl Member Posts: 3,869 Member
edited March 2014 in Breast Cancer #1
Do you really think the hormone therapy, Tamoxifen and the A's really work?

The reason I ask is that so many on here that got a recurrence were on them and they still got a recurrence.

I know there are lots that don't, but, it makes one hesitate in taking them as the side effects with all of them are scary.

And, have all of you that are on Tamoxifen had the test to see if you can even metabolize it? I have read that if you have no or few side effects with Tamoxifen that it means that it probably isn't working for you. Anyone else heard this?

Thanks, Leeza
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Comments

  • MyTurnNow
    MyTurnNow Member Posts: 2,686 Member
    #2
    Leeza, my belief is that
    Leeza, my belief is that they work much more than they don't. There have been many clinical trials and additional testing done just to get these drugs approved. Even though I had a recurrence while on them, I will continue to take them. Just my thoughts.
  • jnl
    jnl Member Posts: 3,869 Member
    #3
    MyTurnNow said:

    Leeza, my belief is that
    Leeza, my belief is that they work much more than they don't. There have been many clinical trials and additional testing done just to get these drugs approved. Even though I had a recurrence while on them, I will continue to take them. Just my thoughts.

    Thanks MyTurnNow. You were
    Thanks MyTurnNow. You were one of the ones that I was thinking about that had a recurrence and had taken a hormone therapy. And, the ones that have no problems never post cause they have nothing to complain about. LOL

    How are you doing? Praying that you are doing great now!


    Leeza
  • chenheart
    chenheart Member Posts: 5,159 Member
    #4
    I took Arimidex for 5 years,
    I took Arimidex for 5 years, and in that time I did NOT have a recurrance...I was off of that drug for almost 2 years before the Beast raised its ugly head again. Even so, the Beast had settled into my lymph system at my original dx in 2003. So, it was always a possibility that it would come back.

    I have been on Tamoxifen since June for the recurrance~ and since that time, my tumor markers ( which I also know are debatable, but in my circumstance are a good indicator) have gone from 54 to 21.

    I seriously hate to think what would/could have happened to me had I opted NOT to take these drugs.

    I say any chance to keep this beast at bay is worth it if we can tolerate the treatment!

    Hugs,
    Chen♥
  • MyTurnNow
    MyTurnNow Member Posts: 2,686 Member
    #5
    jnl said:

    Thanks MyTurnNow. You were
    Thanks MyTurnNow. You were one of the ones that I was thinking about that had a recurrence and had taken a hormone therapy. And, the ones that have no problems never post cause they have nothing to complain about. LOL

    How are you doing? Praying that you are doing great now!


    Leeza

    I'm doing just fine. I had
    I'm doing just fine. I had the bi-lateral mastectomy in August and am scheduled for my exchange surgery on November 15th. I'm so ready to get these expanders out!! Then, I will take one of the 5-year pills (currently taking Aromasin but the final one is to be determined) and continue to live my life. Thanks for asking.
  • Boppy_of_6
    Boppy_of_6 Member Posts: 1,138
    #6
    chenheart said:

    I took Arimidex for 5 years,
    I took Arimidex for 5 years, and in that time I did NOT have a recurrance...I was off of that drug for almost 2 years before the Beast raised its ugly head again. Even so, the Beast had settled into my lymph system at my original dx in 2003. So, it was always a possibility that it would come back.

    I have been on Tamoxifen since June for the recurrance~ and since that time, my tumor markers ( which I also know are debatable, but in my circumstance are a good indicator) have gone from 54 to 21.

    I seriously hate to think what would/could have happened to me had I opted NOT to take these drugs.

    I say any chance to keep this beast at bay is worth it if we can tolerate the treatment!

    Hugs,
    Chen♥

    I have to go with the
    I have to go with the thought of any chance to help the beast stay away the better. I did have the blood test to make sure I would metabolize it ok. I am taking Tamoxifen, just about 3 months in, had some SE's at first but they have gotten better. The hot flashes are the worst of them. I know some who have decided not to take either. Just one of the many things we have to consider. God Bless
    (((Hugs))) Janice
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #7
    benefits out weigh risks-is what i was told
    I honestly didnt' know Tamoxien is Harmone replacement-dah on me I just thought post cancer med. After one year of taking it I had my second internal ultra-sound..(un sure of offical name) showed thickening of uterous-which is what they were looking for (one of side effects)-Shorten story-I had D & C and didn not need surgery---for now anythow..I have blood work every 3-6mths between all my drs and blood always GOOD!
  • jnl
    jnl Member Posts: 3,869 Member
    #8
    disneyfan2008 said:

    benefits out weigh risks-is what i was told
    I honestly didnt' know Tamoxien is Harmone replacement-dah on me I just thought post cancer med. After one year of taking it I had my second internal ultra-sound..(un sure of offical name) showed thickening of uterous-which is what they were looking for (one of side effects)-Shorten story-I had D & C and didn not need surgery---for now anythow..I have blood work every 3-6mths between all my drs and blood always GOOD!

    Disneyfan, tamoxifen is not
    Disneyfan, tamoxifen is not hormone replacement therapy, it is just hormone therapy for bc patients. Completely different drugs and different uses.

    Leeza
  • Miss Murphy
    Miss Murphy Member Posts: 302
    #9
    jnl said:

    Disneyfan, tamoxifen is not
    Disneyfan, tamoxifen is not hormone replacement therapy, it is just hormone therapy for bc patients. Completely different drugs and different uses.

    Leeza

    There are no Guarantees
    We just all have to make the best decisions of what treatments and drugs to take after talking with our doctors. I'm on Tamofifen and keeping my fingers crossed.

    Good luck to all. Sally
  • Annette 11
    Annette 11 Member Posts: 380
    #10
    Boppy_of_6 said:

    I have to go with the
    I have to go with the thought of any chance to help the beast stay away the better. I did have the blood test to make sure I would metabolize it ok. I am taking Tamoxifen, just about 3 months in, had some SE's at first but they have gotten better. The hot flashes are the worst of them. I know some who have decided not to take either. Just one of the many things we have to consider. God Bless
    (((Hugs))) Janice

    Janice TN?
    Janice, I thought your were triple neg. but you are saying that you take Tamoxifen. Are you pos. or neg.?
    Confused Annette :)
  • Alexis F
    Alexis F Member Posts: 3,598
    #11
    Boppy_of_6 said:

    I have to go with the
    I have to go with the thought of any chance to help the beast stay away the better. I did have the blood test to make sure I would metabolize it ok. I am taking Tamoxifen, just about 3 months in, had some SE's at first but they have gotten better. The hot flashes are the worst of them. I know some who have decided not to take either. Just one of the many things we have to consider. God Bless
    (((Hugs))) Janice

    No question is dumb here
    No question is dumb here Leeza, so, always feel free to ask anything. As you see, your sisters are all here to respond to anything.

    Taking the hormone therapy is considered part of our treatment after breast cancer. There are many that choose not to take it for various reasons and that is their decision.

    I don't feel there is any right or wrong in your own choice.

    Good luck to you Leeza,

    ♥ Tinker Lex
  • DebbyM
    DebbyM Member Posts: 3,289 Member
    #12
    Miss Murphy said:

    There are no Guarantees
    We just all have to make the best decisions of what treatments and drugs to take after talking with our doctors. I'm on Tamofifen and keeping my fingers crossed.

    Good luck to all. Sally

    I haven't taken tamox yet.
    I haven't taken tamox yet. I got the prescription for it, but, just can't bring myself to take it. I am one of the ones that are fearful of the side effects. Maybe someday, I will take that first pill. Like my husband says, I can always stop it if I want to.

    Hugs, Debby
  • carkris
    carkris Member Posts: 4,553 Member
    #13
    DebbyM said:

    I haven't taken tamox yet.
    I haven't taken tamox yet. I got the prescription for it, but, just can't bring myself to take it. I am one of the ones that are fearful of the side effects. Maybe someday, I will take that first pill. Like my husband says, I can always stop it if I want to.

    Hugs, Debby

    My rads onc who I respect
    My rads onc who I respect said that tamoxifen was more important than chemo as it is a targeted therapy. I feel it may not cure me but perhaps it can keep the beast at bay. I too was afraid to start it, and except for hot flashes and some low mood(fixed with exersize and antidepressant) I have been well. I dont do well with meds normally. I have heard if you dont have s/e's that perhaps it isnt working. My med onc doesnt believe in the metabolizer test. i will ask my rads onc I see him tomorrow. (If chemo brain allows me to remember)
  • Rague
    Rague Member Posts: 3,653 Member
    #14
    We're all different
    Being IBC, I never gave it a second thought - I'm going to do/take anything that may help keep this Monster away! I've been on Femara for 8 months now with no side effects - but then I never had any when I went through menopause almost 20 years ago.

    Thankfully, I know at this time I'm definately riding NED (had PET yesterday) but that doesn't guarantee anything down the road. How could I tell my Hubby, Son and G-daughter that I hadn't bothered to everything I could have to keep the Monster away because I might have some side effects - that staying with them meant less to me than the possibility of some discomfort. Perhaps i would feel a bit different IF I had a different form that had better %'s of survival rates but I don't - though i don't think that would make any difference to me - fighting to stay with them would be paramount to me.

    That's just me and I do realize that not all think the way I do - we have to each do what we feel is best for ourself.

    Susan
  • sal314
    sal314 Member Posts: 599 Member
    #15
    My Thoughts on Tamoxifen...
    It's the oldest hormonal drug out there. It's been around for 30+ years and has more studies on it's effectiveness than any other hormone therapy drug. It's not a cure all, but I believe it does help the rate of recurrance in a lot of women.

    I didn't like taking it initially. And actually didn't start it until 4 years after my initial diagnoses and treatment. But after being bugged my my oncologist every time I saw him, I finally gave in.

    I'm glad I did. Anything that will help the chance of the cancer NOT coming back is a good thing. I'd hate to have it come back some day and regret that I never did ALL I could have to perhaps stop it from doing so. JMO.

    Sally
  • KathiM
    KathiM Member Posts: 8,028 Member
    #16
    Rague said:

    We're all different
    Being IBC, I never gave it a second thought - I'm going to do/take anything that may help keep this Monster away! I've been on Femara for 8 months now with no side effects - but then I never had any when I went through menopause almost 20 years ago.

    Thankfully, I know at this time I'm definately riding NED (had PET yesterday) but that doesn't guarantee anything down the road. How could I tell my Hubby, Son and G-daughter that I hadn't bothered to everything I could have to keep the Monster away because I might have some side effects - that staying with them meant less to me than the possibility of some discomfort. Perhaps i would feel a bit different IF I had a different form that had better %'s of survival rates but I don't - though i don't think that would make any difference to me - fighting to stay with them would be paramount to me.

    That's just me and I do realize that not all think the way I do - we have to each do what we feel is best for ourself.

    Susan

    I agree with Susan....
    I do have sides (small aches, etc) from Tamoxifen. I must admit, I am looking forward to June, 2011...it's 5 years (YEA!), and I can't take it anymore. And, the AI's for me are not possible...I am still full-on osteoporotic, even with calcium and Actonel...so...as of June, I will be flying without a net, so to speak....

    But, as Susan said, I am proud to say that I did as much as I could to stomp on the beast! If it should try again, well, I will do the same!!

    Hugs, Kathi
  • dee1962
    dee1962 Member Posts: 99
    #17
    sal314 said:

    My Thoughts on Tamoxifen...
    It's the oldest hormonal drug out there. It's been around for 30+ years and has more studies on it's effectiveness than any other hormone therapy drug. It's not a cure all, but I believe it does help the rate of recurrance in a lot of women.

    I didn't like taking it initially. And actually didn't start it until 4 years after my initial diagnoses and treatment. But after being bugged my my oncologist every time I saw him, I finally gave in.

    I'm glad I did. Anything that will help the chance of the cancer NOT coming back is a good thing. I'd hate to have it come back some day and regret that I never did ALL I could have to perhaps stop it from doing so. JMO.

    Sally

    I was on it for 5 yrs back
    I was on it for 5 yrs back in 1995 and i was clean for 17 yrs..so i don't know it was a long run i didn't ever think of this beast coming back it took me off guard....ugh
  • phoenixrising
    phoenixrising Member Posts: 1,508
    #18
    Hi Leeza, I think they work.
    Hi Leeza, I think they work. And although you may be right that many women who have taken it have gotten a recurrence, it's not usually while they're taking it. These drugs are also used to reduce tumour size and tumour markers, which proves they are effective in kicking back the beast if not totally eliminating it. I've been on Tamoxifen, Arimidex and now Aromasin. I had the cyp2d6 genetic test for metabolizing Tamoxifen and found I was an intermediate metabolizer. I had the test done because I was having so many problems on it.
    There are many women who have had horrific se with Tamoxifen and found out they were poor metabolizers so I wouldn't use se as a gauge to its effectiveness although that would seem to make the most sense.

    Don't let the se of others scare you too much. You might be one of the lucky ones that handle it really well. Besides isn't it better to try it and go off it if it is too much to handle than do chemo again? Good luck to Leeza,
    jan
  • jnl
    jnl Member Posts: 3,869 Member
    #19
    phoenixrising said:

    Hi Leeza, I think they work.
    Hi Leeza, I think they work. And although you may be right that many women who have taken it have gotten a recurrence, it's not usually while they're taking it. These drugs are also used to reduce tumour size and tumour markers, which proves they are effective in kicking back the beast if not totally eliminating it. I've been on Tamoxifen, Arimidex and now Aromasin. I had the cyp2d6 genetic test for metabolizing Tamoxifen and found I was an intermediate metabolizer. I had the test done because I was having so many problems on it.
    There are many women who have had horrific se with Tamoxifen and found out they were poor metabolizers so I wouldn't use se as a gauge to its effectiveness although that would seem to make the most sense.

    Don't let the se of others scare you too much. You might be one of the lucky ones that handle it really well. Besides isn't it better to try it and go off it if it is too much to handle than do chemo again? Good luck to Leeza,
    jan

    Great responses and words of
    Great responses and words of wisdom from all of you. Thank you so much!

    I knew that I would be glad that I posted my question.

    Hugs, Leeza
  • Angie2U
    Angie2U Member Posts: 2,991
    #20
    dee1962 said:

    I was on it for 5 yrs back
    I was on it for 5 yrs back in 1995 and i was clean for 17 yrs..so i don't know it was a long run i didn't ever think of this beast coming back it took me off guard....ugh

    How are you doing Dee?
    How are you doing Dee? Great post Leeza.
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    #21
    I'm triple negative, so it's
    I'm triple negative, so it's not an option for me. But anything that will help me keep the beast away is worth it.

    We already do so much to fight the beast...remove body parts, sacrifice vital cells with chemo, deadly radition. These are major weapons with major impacts. I say use every weapon available.

    Linda

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