Questions on Tamoxifen side effects

Akiss4me
Akiss4me Member Posts: 2,188
edited March 2014 in Breast Cancer #1
Hi everyone.
Well, after much debating, I decided to pop the Tamoxifen and give it a try (no regrets!).
So, I have had three doses and nada! Not one hot flash or night sweat!! When do the side effects happen? Days, weeks, months after you start?
Also, I have somewhere stored in my brain, that if I am not having any side effects, I may not be metabolizing it. When I saw my Onc, she said the test for Tamoxifen was not readily available to the public, when I asked to have it done. Yet so many of you have had it. Are you in a study to get it done? Did you pay yourself? Did your insurance cover it? Darn it!! I want answers! Oopps....ok, maybe I am having a slight side effect? I feel like I am going to jump out of my skin. Yuke, I don't like this at all!
OK, all you Tamoxifen users...help me out here!
Hugs and smiles....
♥ Pammy

Comments

  • aurora2009
    aurora2009 Member Posts: 544 Member
    #2
    Pammy
    When I broght the question up my doctor told me she would be glad to order it, but she wasn't sure if my insurance would cover it. She told me the studies were still so new and for now it's not concidered to be part of the needed regimin.

    So on monday when I go to the lab, I'm supposed to have them call my insurance to get it cleared or I will end up with a bill, not sure what the cost will be or if I'm going to be able to cover it. But I really want the test, it doesn't make sense to take something that may not work for you.

    I'll let you know more when I go, if it's not covered i plan to exhaust every resource out here to get it.

    Glad you're having no side effects, so far, did your doctor tell you that the only side effects, were the hot flashes, and nights sweats? mine did, are the any more to worry about?

    Really confused on the Tamoxifen thing

    Aurora
  • terpsi
    terpsi Member Posts: 33
    #3
    aurora2009 said:

    Pammy
    When I broght the question up my doctor told me she would be glad to order it, but she wasn't sure if my insurance would cover it. She told me the studies were still so new and for now it's not concidered to be part of the needed regimin.

    So on monday when I go to the lab, I'm supposed to have them call my insurance to get it cleared or I will end up with a bill, not sure what the cost will be or if I'm going to be able to cover it. But I really want the test, it doesn't make sense to take something that may not work for you.

    I'll let you know more when I go, if it's not covered i plan to exhaust every resource out here to get it.

    Glad you're having no side effects, so far, did your doctor tell you that the only side effects, were the hot flashes, and nights sweats? mine did, are the any more to worry about?

    Really confused on the Tamoxifen thing

    Aurora

    tamoxifen
    Hi Aurora,

    I was on Tamoxifen for two years and then started Arimidex to finish up. Then, I learned my cancer metastasized to my bone and have been now in treatment since January.

    As my first diagnosis was estrogen and progesterone positive, I took the two drugs for that following my primary treatment in 2004-05. Now that the cancer has blossomed into another generation of a stronger, more mutant form (ugh), it is no longer positive for those two characteristics.

    I can't speak to the question of effectiveness. Like so many other aspects of this disease, it's all so individual that it would take a lot of tests to rule out or rule in an individual based on general parameters. If you can take a test to determine whether it would work for you, that's great. I'd do it. I'm sure you'll find out the cost before proceeding, though, if your insurance does not cover it as labs can be surprisingly expensive. If someone is running a clinical trial that you could get into, that would be another way to be covered.

    As far as side effects, I have heard that the worst of them are the hot flashes. That varies, though, as usual, with the individual. A woman on a committee with me hated that she had about five hot flashes per week; she had her doctor change her from Tamoxifen because she couldn't stand it. I thought it was funny because I had about five a day most of the time, some very severe. When I changed to the Arimidex, I was surprised at how fast they diminished. After driving to work most days with my head out the window LOL, it was a nice change.

    Good luck with your treatment, and keep us posted.

    Hugs,
    Donna Peach
  • Akiss4me
    Akiss4me Member Posts: 2,188
    #4
    aurora2009 said:

    Pammy
    When I broght the question up my doctor told me she would be glad to order it, but she wasn't sure if my insurance would cover it. She told me the studies were still so new and for now it's not concidered to be part of the needed regimin.

    So on monday when I go to the lab, I'm supposed to have them call my insurance to get it cleared or I will end up with a bill, not sure what the cost will be or if I'm going to be able to cover it. But I really want the test, it doesn't make sense to take something that may not work for you.

    I'll let you know more when I go, if it's not covered i plan to exhaust every resource out here to get it.

    Glad you're having no side effects, so far, did your doctor tell you that the only side effects, were the hot flashes, and nights sweats? mine did, are the any more to worry about?

    Really confused on the Tamoxifen thing

    Aurora

    Thanks Aurora
    Please do let me know what you find out. It may be to soon that I have no side effects or it may be that I am going to be one of the lucky ones that won't have any at all. There are other side effects (as with all drugs). Your pharmacist will give you literature on it when he/she dispenses it to you. They are required by law to give this out. Hot flashes and night sweats are the two most common. Guess I'm not very common (Teehee)!! ♥ Pammy
  • Dawne.Hope
    Dawne.Hope Member Posts: 823
    #5
    Akiss4me said:

    Thanks Aurora
    Please do let me know what you find out. It may be to soon that I have no side effects or it may be that I am going to be one of the lucky ones that won't have any at all. There are other side effects (as with all drugs). Your pharmacist will give you literature on it when he/she dispenses it to you. They are required by law to give this out. Hot flashes and night sweats are the two most common. Guess I'm not very common (Teehee)!! ♥ Pammy

    I'm supposed to start on
    I'm supposed to start on Tamoxafen next week.

    I'm nervous! I too would like to know how soon the side effects start.

    The hot flashes may depend on whether or not you're still menstrating. If not ... then the hot flashes may not be an issue.

    Not sure.

    But I'm pretty nervous about taking it.
  • Akiss4me
    Akiss4me Member Posts: 2,188
    #6
    Dawne.Hope said:

    I'm supposed to start on
    I'm supposed to start on Tamoxafen next week.

    I'm nervous! I too would like to know how soon the side effects start.

    The hot flashes may depend on whether or not you're still menstrating. If not ... then the hot flashes may not be an issue.

    Not sure.

    But I'm pretty nervous about taking it.

    hmmm
    Well, Dawn, I had a hysterectomy 4 years ago (yeah...no more periods!) but left my ovaries in. So I never went through menopause. This is the reason (besides others) that I have surgery scheduled to remove them. So I should still be experiencing the side effects as it is blocking the estrogen? I was petrified to take it, but reasoned I couldn't live with myself if I didn't do all available to me (no regrets). Worse that can happen is I stop taking them, right? ♥ Pammy
  • Akiss4me
    Akiss4me Member Posts: 2,188
    #7
    terpsi said:

    tamoxifen
    Hi Aurora,

    I was on Tamoxifen for two years and then started Arimidex to finish up. Then, I learned my cancer metastasized to my bone and have been now in treatment since January.

    As my first diagnosis was estrogen and progesterone positive, I took the two drugs for that following my primary treatment in 2004-05. Now that the cancer has blossomed into another generation of a stronger, more mutant form (ugh), it is no longer positive for those two characteristics.

    I can't speak to the question of effectiveness. Like so many other aspects of this disease, it's all so individual that it would take a lot of tests to rule out or rule in an individual based on general parameters. If you can take a test to determine whether it would work for you, that's great. I'd do it. I'm sure you'll find out the cost before proceeding, though, if your insurance does not cover it as labs can be surprisingly expensive. If someone is running a clinical trial that you could get into, that would be another way to be covered.

    As far as side effects, I have heard that the worst of them are the hot flashes. That varies, though, as usual, with the individual. A woman on a committee with me hated that she had about five hot flashes per week; she had her doctor change her from Tamoxifen because she couldn't stand it. I thought it was funny because I had about five a day most of the time, some very severe. When I changed to the Arimidex, I was surprised at how fast they diminished. After driving to work most days with my head out the window LOL, it was a nice change.

    Good luck with your treatment, and keep us posted.

    Hugs,
    Donna Peach

    Donna
    That's what I was told, that 95% of women will experience hot flashes from mild to severe. I was under the impression as soon as you started taking them. I'm ok with the fact that it may take a while, but I'm trying to get a general idea if most people experience them right away? Do you remember when you started having them? Was it right away or weeks later? Any info would be helpful. Smiles... ♥ Pammy
  • KathiM
    KathiM Member Posts: 8,028 Member
    #8
    For 3 years, this past July....
    I had a surgical hysterectomy during my rectal cancer treatment, so I had a choice between Tamoxifen and the AI's. I chose Tami because the AI's have a nasty side of bone thinning (I am osteoporotic from the treatments for the cancers) and can raise cholesterol (I have had high for my adult life). I have had no reoccurance.

    So, Tami it is. I have had a few hot flashes, but not enough to blame the drug. I have had no other sides until I switched the brand. Went to a generic Tamoxifen from WalMart to save money, and now I got heart palpitations. I will be back in America on Wednesday, and my first call will be to the pharmacy for my old brand...

    Hugs, Kathi

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