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Are lower doses of Tamoxifen just as effective?

sweetbean
sweetbean Member Posts: 433

Hi, 

I found a study on Evidence Watch yesterday that said Norweigen researchers had found that lower doses of Tamoxifen were as effective as the standard dose.  I can't find that study today, because that website is REALLY hard to navigate.  Has anyone else heard that about lower doses?  I'm really small - maybe I won't need quite so much drug?  I hope? 

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Comments

  • omaz
    omaz Member Posts: 4,218
    edited April 2011
    Hi, I saw this one link and this one
  • jo1955
    jo1955 Member Posts: 7,545
    edited April 2011

    I have done extensive research on Tamoxifen and have not run across that study.  I have read in numerous places that the standard dose is 20mg.  It can be taken all at once or in a split dose of 10mg in the am and 10mg in the pm.  I'm not sure most oncs would prescribe a long term lower dose.  That is definitely a question you should ask your onc.

  • sweetbean
    sweetbean Member Posts: 433
    edited April 2011

    Thanks Omaz!   The one out of Norway was super recent, too.  I am pretty sure that my onc will not be up on the very latest studies.    Does anyone know what it means when it talks about "regulating biomarkers."  The second study you linked said that lower doses were just as effective as regulating breast cancer cell proliferation, but less effective at regulating blood biomarkers, like IGF-1.  I'm a touch confused - can anyone shed some light?

  • sweetbean
    sweetbean Member Posts: 433
    edited April 2011

    bumpity bumpity

  • Sherbear
    Sherbear Member Posts: 68
    edited April 2011

    Omaz, that second link, is that the Italian study?  I remember reading a 2003 article about this topic back during chemo and I wondered if anything was going to happen with regards to it's subject.  I also understand that Tam is one of the most widely prescribed drugs and therefore pretty inexpensive in relation to other drugs, that some feel it's not worth it to test this theory out.  But I am very interested if there is another study out there trying to figure this out for us.  

  • sweetbean
    sweetbean Member Posts: 433
    edited April 2011

    Yes, that is the Italian study.  I am most interested that it says that lower doses can downregulate breast cell proliferation.  However, it said that lower doses were unable to downregulate IGF-1 and globulin.  I know that you can downregulate IGF-1 through a strict "anti-cancer/ largely vegetarian (with fish)/ no sugar/ no dairy"  diet.  It is very restrictive, but I have been doing it, no sweat, since I was diagnosed.  I would rather do that and take a lower dose, than just take the higher dose.  Thoughts?  Opinions?

    (I am 37 and have not yet had kids, so if you are about to tell me about your experience, please factor this in because our situations and concerns may be different.) 

  • Sherbear
    Sherbear Member Posts: 68
    edited April 2011

    I am in the same boat Sweetbean, 37, no kids yet, but have frozen embryos.  I have yet to begin the Tam as I'm seeing my fertility doc finally in a few weeks and then will decide what to do.  Would love to take a lower dose that still does what it's supposed to do without the SE's and potential toxicity.  

  • sweetbean
    sweetbean Member Posts: 433
    edited April 2011

    Hi there Sherbear!

    I did the frozen egg thing, too - That is great that you have embryos!  I figure my eggs will always be 37, at least!  Would you mind keeping me posted on what your fertility doc says?  

  • Sherbear
    Sherbear Member Posts: 68
    edited April 2011
    Of course, not a problem.  Will be seeing her on the 19th, am interested to see what she has to say as she deals with a lot of cancer patients and obviously addresses the hormone issues. I honestly have no idea what to expect though Laughing.  That's why I have been hesitant to start the Tam, I don't want to be told that if I can carry, the sooner the better and then be full of Tam.  Didn't think a few more months of not being on it would hurt, although I know my onc wouldn't be all too happy.  
  • sisterinspirit
    sisterinspirit Member Posts: 29
    edited April 2011

    Hi Ladies,

    I asked my med onc that question, and she indicated that the effectiveness of a lower dose hadn't been studied.  Sounded like a bit of a pat answer.  My hat is off to you for pursuing the research.

  • omaz
    omaz Member Posts: 4,218
    edited April 2011

    I just wish they had a way to measure effectiveness.

  • sweetbean
    sweetbean Member Posts: 433
    edited April 2011

    Hi there sisterinspirit,

     It is my understanding that the oncs can't recommend that we take a lower dose (no matter what they think) because of liability issues.  I am interested in pursuing advocacy that would promote a researcher in this country to study this issue.  Not sure how to start, but I have a few more months of treatment to think about an advocacy strategy.  We should have all the answers we need at our disposal.   

  • omaz
    omaz Member Posts: 4,218
    edited April 2011
    sweetbean, I'll read the articles this weekend and let you know what I can fgure out from here.
  • sisterinspirit
    sisterinspirit Member Posts: 29
    edited April 2011

    sweetbean,

    Wow, hadn't heard that but makes sense.  If they recommend something that hasn't been studied and things go bad...

  • omaz
    omaz Member Posts: 4,218
    edited April 2011
    sweetbean - here is another article about low dose tam - link
  • Sherbear
    Sherbear Member Posts: 68
    edited April 2011

    Omaz, do you know how to see this link?  When I click on it it asks me to sign in or register to pay-per-view.  :)

  • omaz
    omaz Member Posts: 4,218
    edited April 2011

    Sherbear - I will PM you.

  • Neece
    Neece Member Posts: 18
    edited April 2011

    Hi, I noticed this thread with interest, as I have been on standard dose of Tamoxifen (20 mg) for about 15 months now, and have just begun participation in a clinical trial to look at the different rates that people metabolise Tamoxifen into the 'active ingredient' so to speak, and the possibility that either lower or higher doses of Tamoxifen could be prescribed according to an individual's rate. Have had prelimininary blood test to check my metabalisation rate, hormone levels, etc. If it is found that I am either a high or low metabaliser, they may change my dose for a period of time, then check again. They are also monitoring side effects as apparantly, studies have linked effectiveness of Tamoxifen with experience of side effects.

  • omaz
    omaz Member Posts: 4,218
    edited April 2011
    Neece - that sounds interesting.  What is the name of the study?
  • Sherbear
    Sherbear Member Posts: 68
    edited April 2011

    Any more news on this?  I'm going to see my onc tomorrow and am going to bring this subject up.  I know she won't do anything about it (and probably really can't, to be honest), but I just want to see what her reaction is to it and make her aware of it (if she already isn't, that is).  20mg a day is such a random number, the amount that apparently everyone can 'handle' and with the half-life of Tam, I don't see why we need so much every single day.  I want the benefit of this drug without all of the other affects (or I'd like them potentially lessened).  Overall, I'm young and pretty resilient so more than likely I'll be fine on it, but I'd like to know her thoughts regardless.  And today I had some baseline tests done so we can see how things are in a few months.  

  • Chocolaterocks
    Chocolaterocks Member Posts: 94
    edited April 2011

    shearbear

    I would love to hear the answer to your question regarding lower does of tam. I asked my onco and the answer was she was not willing to rx less than 20. I am getting another opinion on my situation in a few days as well.

    Hope to hear that there is some other opinions on this.

    thanks

    Chocolate

  • omaz
    omaz Member Posts: 4,218
    edited April 2011
    Sherbear - I talked to my onc PA and she said there are 'no studies' on the effectiveness of lower doses.  I mentioned the couple we have looked at here and she repeated herself.
  • Sherbear
    Sherbear Member Posts: 68
    edited April 2011

    I'm fully prepared for that.  *sigh* lol

  • CatbirdC
    CatbirdC Member Posts: 235
    edited April 2011

    Hi All,

     Just wanted to chime  in because I noticed this subject and I'm always looking for possibilities of a lower than the 20mg dose too.

    I've asked 2 oncologists and my surgeon~~

    All 3 acted as though I had checked my brain at the reception desk and then gave the pat answer about no studies showing any research of any measure at all has been done.

    One thing I read that really makes sense is....Since Tamoxifen is sold generic for such a low cost, no drug company would want to fund research for it.

    CatbirdTongue out

  • Sherbear
    Sherbear Member Posts: 68
    edited April 2011

    Yup, exactly, that's the main thing that stands in the way.  I just wish they would listen to people who are on it and having effects that are less than desirable (from what they consider minor to serious).  I also hate when someone has an effect that isn't recognized so they immediately dismiss it as NOT being due to a certain drug or treatment.  Have already had that happen to me only for them to admit weeks later that I was probably right.  I don't want to be right over them for the love of god, just want them to think outside their little drug box.  It's what they believe in, but they themselves have to admit that their knowledge has to evolve, just like any job, so although this is the standard of care right now, it wouldn't hurt for some of them to keep their minds open and not look at us like we're crazy to even suggest options because we do our research.  I'm so sick of being expected to take whatever because someone says so, I don't treat my job like that at all, I'm always learning from everyone I work with (and I am by no means saving lives with my type of work).  Excuse the rant, I'm done now, lol.  :)

  • omaz
    omaz Member Posts: 4,218
    edited April 2011
    Sherbear - my onc PA actually said exactly that yesterday.  She was talking about the gene testing for tamox metabolism and how a recent big study presented at a meeting showed that the genetic testing was not useful.  She said they used to do it and now they don't. 
  • Sherbear
    Sherbear Member Posts: 68
    edited April 2011

    Went to see my onc yesterday and interestingly enough, when I asked about dosage and the effect of a lower one, she says she's okay with my going down to 10mg a day IF I have a rough time on 20mg a day.  The reason I say it's 'interesting' is because she is a huge fan of Tamox and has never once said anything to me about a lower dose and obviously she still believes it's effective even with a lower dose (there's no way she would ever say that to me if she didn't).  I'm sure I'll probably do alright on 20, but I was shocked that she 'gave in' to me so quick.  It definitely makes me wonder........

  • omaz
    omaz Member Posts: 4,218
    edited April 2011
    Sher - Like what does she know that she isn't saying?
  • sweetbean
    sweetbean Member Posts: 433
    edited April 2011

    Fascinating about the lower dose!  The study that I read said that reducing breast cancer cell proliferation was effective at lower doses (as low as 1mg!).  Lower doses were not as effective in reducing IGF-1 and globulin.  Now, I know that IGF-1  (insulin growth hormone) can be reduced via diet and exercise (avoiding foods that makes your insulin spike).  In addition, there are blood tests that can tell you if you are in a healthy range for your IGF-1.  I don't know about globulin, though.  It seems like the same would be true, since our lifestyles affect a lot.  I am going to a integrative wellness center in MA in about 3 weeks and will let you know what they tell me.

    Anyone know anything about globulin?  It's the sex hormone, I think. 

  • Sherbear
    Sherbear Member Posts: 68
    edited April 2011

    Exactly Omaz, that's what I was thinking.  I didn't even get into the studies with her that much because she said that she'd put together some info for me on the 20mg dose and how they came up with it.  I told her I know it's just kind of random and a number that most women are supposed to tolerate well after they found 40mg was causing too many problems.  The thing is, I think the half-life of Tam is long as well so it makes me wonder how long it stays in our system to do it's job (I'm talking about each individual pill).  I obviously have to read the studies again, but I do think it's promising and am still so surprised that she told me right of about going down to 10 if I have problems.