Tamoxifen..How did everyone do on it??

Jeanne D
Jeanne D Member Posts: 1,867
edited March 2014 in Breast Cancer #1
I am to take tamoxifen for 5 years after I finish my radiation treatments. Anyone that has been or are on it now....what are the good and or the bad of it? Thanks!

Comments

  • Jadie
    Jadie Member Posts: 723
    tamoxifen
    Hi Jeanne I took tamoxifen for 2yrs and then switched to aromasin. I have had no side effects from either except maby fatigue.

    Take care
    Jadie
  • Marcia527
    Marcia527 Member Posts: 2,729
    My oncologist switched me to
    My oncologist switched me to Aromasin after being on Tamoxifen about 8 or 9 months. I had started to spot and because I also had a sister who had uterine cancer, he ran a test to make sure I was in menopause, and switched me just in case it had something to do with it. I ended up having a D&C and I had uterine polyps. The Tamoxifen made my body a furnace but so did Aromasin.

    Just make sure you see your gynecologist once a year.
  • tasha_111
    tasha_111 Member Posts: 2,072
    Marcia527 said:

    My oncologist switched me to
    My oncologist switched me to Aromasin after being on Tamoxifen about 8 or 9 months. I had started to spot and because I also had a sister who had uterine cancer, he ran a test to make sure I was in menopause, and switched me just in case it had something to do with it. I ended up having a D&C and I had uterine polyps. The Tamoxifen made my body a furnace but so did Aromasin.

    Just make sure you see your gynecologist once a year.

    Tamoxifen
    Hi, I finished chemo august last year and went on tamoxifen.......Hey thanks, I forgot to take it today, you reminded me. I sweat like hell at night but that is the only side effect I have noticed so far. Hope you get along with it as well as I do........Hugs Jxxxxxxxxx
  • chetra
    chetra Member Posts: 17
    Hi Jeanie
    I was on tamoxifen from Feb 2008 to March 2009. I was dx with the cancer returning to the bone in my spine. So my hormone theropy has went to a shot once a month will get the name at nexted visit. But I had no side effects from tamoxifen other than weight gain. I had a complete After my mastectomy I had a historectomy ( spelled wrong Im sure) so was already dealing with hot flashes ect...But they all subsided pretty much. Fatigue is the hardest.
    Hope I have helped soom. Hugs - Hang Strong

    Chetra
  • cruf
    cruf Member Posts: 908
    Tamoxifen
    I took tamoxifen for 5 years and only side effects were hot flashes and vaginal discharge. I didn't gain any weight which I have read other ladies complain about. I do get checked 2 x a year by my Gynocologist for uterine cancer via internal US. After 5 years I switched to femara for 8 mos then Aromasin for 1 1/2 years and that's another story! Good luck with the Tamoxifen. It's very doable! HUGS!! Cathy
  • Jeanne D
    Jeanne D Member Posts: 1,867
    Thank you all!
    I can only take tamoxifen and not the other drug because my insurance will only pay for tamoxifen. I stopped menustrating at the age of 44, so, I assume I went thru menopause already. So, maybe I won't get the hot flashes with this drug? ( crossing fingers ) I have never had them and have been told they are awful. But, thanks all for the info. The side effects sound doable.

    Hugs to all of you!
  • phillis313
    phillis313 Member Posts: 16
    Tamoxifen
    Hi Jeanne,

    I'm really new on Tamoxifen. Started it in Jan '09. Can't say that I've noticed too many side affects. Can't really determined if side affects are from other things. I had maybe one or two hot flashes at night, but now I really can't see any. I'm wondering if it's working. I read somewhere where if you have experienced the flashes, that there's a lower reoccurance of cancer. Can't tell you where I read that, but anyway, good luck. So far, no complaints. I've been tired, but can't tell if it's my lifestyle currently or the drug, too many variables.

    Take Care!

    Lisa
  • Kristin N
    Kristin N Member Posts: 1,968 Member
    Tamoxifen
    I am supposed to take it for 5 years after I finish my radiation treatments. I am dreading the side effects. I have never had a hot flash and they talk about vaginal discharge, weight gain? Dang, anything else?
  • Jeanne D
    Jeanne D Member Posts: 1,867

    Tamoxifen
    Hi Jeanne,

    I'm really new on Tamoxifen. Started it in Jan '09. Can't say that I've noticed too many side affects. Can't really determined if side affects are from other things. I had maybe one or two hot flashes at night, but now I really can't see any. I'm wondering if it's working. I read somewhere where if you have experienced the flashes, that there's a lower reoccurance of cancer. Can't tell you where I read that, but anyway, good luck. So far, no complaints. I've been tired, but can't tell if it's my lifestyle currently or the drug, too many variables.

    Take Care!

    Lisa

    Not too scary
    Thanks all! You have all made tamoxifen sound not too bad. I was scared of side effects with it. Sometimes I just get so tired of all of the pain, burn, tiredness etc. And, I just hate to think of starting something else new that is going to affect me in a negative way. I hope that makes sense. Anyway.thank you for the answers!
  • Kristin N
    Kristin N Member Posts: 1,968 Member
    Kristin N said:

    Tamoxifen
    I am supposed to take it for 5 years after I finish my radiation treatments. I am dreading the side effects. I have never had a hot flash and they talk about vaginal discharge, weight gain? Dang, anything else?

    I have been reading up on
    I have been reading up on tamoxifen on the internet. It doesn't sound too bad. And, if it helps in a recurrence of cancer..the side effects, I guess, are the least of our concern. Right?
  • pkline64
    pkline64 Member Posts: 3
    Jadie said:

    tamoxifen
    Hi Jeanne I took tamoxifen for 2yrs and then switched to aromasin. I have had no side effects from either except maby fatigue.

    Take care
    Jadie

    aromasin
    Still no side effects? I have been on aromasin for 4-5 weeks with many side effects. Maybe I will have to go on tamoxifen they say. Did you have many side effects with that? I am 64 and post menopausal.

    Thanks,

    PKline
    pkline2164@comcast.net
  • Christmas Girl
    Christmas Girl Member Posts: 3,682 Member
    Kristin N said:

    I have been reading up on
    I have been reading up on tamoxifen on the internet. It doesn't sound too bad. And, if it helps in a recurrence of cancer..the side effects, I guess, are the least of our concern. Right?

    Tamoxifen - or placebo?
    Hello, ladies.

    I took Tamoxifen for 2 years; then, was switched to Arimidex (3+ years to date). Although there CAN be many & varied side effects, I felt nothing at all. Could've been a placebo ("sugar pill") for all I knew. In fact, at one point I asked my oncologist if it was actually "working" or doing anything for me. (Of course, it was.) As always, it's important to ask questions & have a thorough discussion with your doctor upfront. And, IF you begin to experience side effects - contact your doctor accordingly.

    Now, the Arimidex... That's a completely different story for me. Even so, after surgery/chemotherapy/radiation - I'm not going to allow a tiny white pill to end my ongoing battle to fight recurrence.

    Best of luck to you, Jeanne. Hope you do OK with it.

    Kind regards, Susan
  • ritazimm
    ritazimm Member Posts: 171
    Tamoxifen
    I have not had many side effects with the tamoxifen. Vaginal discharge is probably the only one that I can guess was from it and the others - was it the tamoxifen or all the other side effects of getting older. (I'm 48 but was thrown into menopause from the chemo so is it the menopause that caused the hot flashes, etc?) But I am HAPPY to say that it did NOT make me gain weight! I was very afraid to switch to the Arimidex for fear that it would cause the weight gain since the tamoxifen didn't. So far I'm staying the same weight (which is 30 pounds less than before cancer so I'm happy!) but I've only been on the Arimidex for 2 months so I hope it doesn't change! That is one side effect I'm not sure I would be willing to take and I imformed my doctor of that prior to taking the Arimidex.

    My grandma lived for 20 years on tamoxifen. They don't treat with it that long anymore unless that is all someone can take, but it really worked well for her. She even had bone mets and brain mets and lived another 10 years after the brain mets was diagnosed. Can't ask for more than that in my opinion.

    Good luck!
  • djteach
    djteach Member Posts: 273
    tamoxifen
    Hi Jeanne,
    I have just switched to tamoxifen since Jan. I had a few more hot flashes, and some weight gain--Yuck! I can't complain though because it has kept a tumor in my lung from growing for 3 months. My outcome is worth the side effects for me. But remember, we all react differently to different medications. I hope this helps a little. Gentle Hugs, Donna
  • outdoorgirl
    outdoorgirl Member Posts: 1,565
    Another possible side effect
    Jeanne,
    I've experienced the hot flashes and weight gain also,but constipation also. And I'm not the only one,I have a friend who's already been through her 5 years of taking it and she said she had problems with constipation also. Hate to put another se on the list,but there you go. She said that she ate an apple everyday. I occasionally use Benefiber,but believe it or not,doing situps sometimes helps! Maybe it helps your abdominal muscles push it down,I don't know!!That,and drink plenty of water!
    My onc is going to put me on a aromatase inhibitor when he's convinced that I'm menopausal-after everything that I've read here about everyone elses experiences with these and their se it makes me a little nervous!Guess I need to look at it like I'd rather go through the se and have a better chance of not getting it back again...
  • Jeanne D
    Jeanne D Member Posts: 1,867

    Another possible side effect
    Jeanne,
    I've experienced the hot flashes and weight gain also,but constipation also. And I'm not the only one,I have a friend who's already been through her 5 years of taking it and she said she had problems with constipation also. Hate to put another se on the list,but there you go. She said that she ate an apple everyday. I occasionally use Benefiber,but believe it or not,doing situps sometimes helps! Maybe it helps your abdominal muscles push it down,I don't know!!That,and drink plenty of water!
    My onc is going to put me on a aromatase inhibitor when he's convinced that I'm menopausal-after everything that I've read here about everyone elses experiences with these and their se it makes me a little nervous!Guess I need to look at it like I'd rather go through the se and have a better chance of not getting it back again...

    Has anyone here just stopped
    Has anyone here just stopped taking tamoxifen because of the side effects? I know that I will if I have those effects. And, it sounds like tamoxifen has the least side effects in comparison to the other hormone drugs that they give. What are the percentages that you were given inre to tamoxifen stopping a recurrence or prolonging your life? Was it really worth it? Someone said 50%, but, I don't believe that.
  • outdoorgirl
    outdoorgirl Member Posts: 1,565
    Jeanne D said:

    Has anyone here just stopped
    Has anyone here just stopped taking tamoxifen because of the side effects? I know that I will if I have those effects. And, it sounds like tamoxifen has the least side effects in comparison to the other hormone drugs that they give. What are the percentages that you were given inre to tamoxifen stopping a recurrence or prolonging your life? Was it really worth it? Someone said 50%, but, I don't believe that.

    Not Sure Of The Percentages
    Jeanne,
    I'm not sure of the percentages,but I do know that unfortunately every medication has it's side effects.You can't get away from that unless you only have natural treatments and then you can't be sure it's doing you any good.I know what you're saying, I hate the fact too that they all have side effects.You don't want to have to wonder and worry about that too.
    I know for me,I will still take it anyways.I'm going to ask my onc questions about the different medications when it comes time to make my choice.There aren't any guarantees that I won't get reccurance or a new cancer,but I'm going to try to do everything I can to keep it at bay. Jeanne,talk to your onc and see what he or she has to say. Do some homework on the acs website,Susan G Komen.
  • Bill.S
    Bill.S Member Posts: 177
    tasha_111 said:

    Tamoxifen
    Hi, I finished chemo august last year and went on tamoxifen.......Hey thanks, I forgot to take it today, you reminded me. I sweat like hell at night but that is the only side effect I have noticed so far. Hope you get along with it as well as I do........Hugs Jxxxxxxxxx

    Sweat
    Thanks tasha, I didn't know where the sweat was comming from. Now I can blame it on Tamoxifen.
    Bill S.