Tamoxifen

madsters1
madsters1 Member Posts: 120
Anybody NOT do hormone therapy? You know...just say no. If so, how are you doing and what do you know about the stats on others who have declined it? I'm studying up on every stage of treatment. I start radiation next week then on to hormone therapy...maybe. I'm also wondering if the side effects from Tamoxifen are some things I'm already experiencing due to being in menopause.

Comments

  • Rague
    Rague Member Posts: 3,653 Member
    Femara
    I never gave it a second thought - I'm ER+ and IBC. I will do everything I can to keep the Monster at bay. So far 2 1/2 yrs post DX I'm still riding NED which is fantastic considering the stats show that only 1 of 4 IBC to 5 yrs. I started Femara a week after starting rads and at that time was told I"d be on it for 5 yrs - last time I saw Dr T. I was told I'd be on it forever.

    SE's for me have been non-existant. Well possibly made osteoporosis hit faster but with my family HX of it can't be sure..

    We are all so different and all breast cancer is not the same in prognosis. So do your checking and go with or don't go with what you feel is 'right' for you.

    Susan
  • Chickadee1955
    Chickadee1955 Member Posts: 356 Member
    Rague said:

    Femara
    I never gave it a second thought - I'm ER+ and IBC. I will do everything I can to keep the Monster at bay. So far 2 1/2 yrs post DX I'm still riding NED which is fantastic considering the stats show that only 1 of 4 IBC to 5 yrs. I started Femara a week after starting rads and at that time was told I"d be on it for 5 yrs - last time I saw Dr T. I was told I'd be on it forever.

    SE's for me have been non-existant. Well possibly made osteoporosis hit faster but with my family HX of it can't be sure..

    We are all so different and all breast cancer is not the same in prognosis. So do your checking and go with or don't go with what you feel is 'right' for you.

    Susan

    Madsters,
    I did Femara for 9

    Madsters,

    I did Femara for 9 months with awful side effects. I stopped in June and passed on Tamoxifen. I saw a new oncologist a few weeks ago when mine returned to San Diego. My new onc really pressed me to at least try Tamoxifen to see if I could tolerate it better. I have been taking it for 2 weeks and so far only notice some joint pain. I entered menopause due to hysterectomy at age 48, and (so far) haven't had any of the extreme hot flashes, etc., that some complain of. I agreed to try this for 30 days. If I end up in the misery I experienced with Femara I will discontinue. My onc said that the hormone therapy does significantly decrease my odds of a recurrence, but my odds of a recurrence without doing anything is already very low. I am very blessed to feel like I have options, but I did agree that unless the SE get really bad I will go the distance to prevent a recurrence. Good luck!

    Chickadee
  • SIROD
    SIROD Member Posts: 2,194 Member
    Premenopausal
    Hi again,

    I was premenopausal when I was diagnose with breast cancer. Half way through treatment, I stop having periods. Once treatment was over, I began Tamoxifen and it guaranteed that I would remain in what was known then as chemical menopause for the next 4 years.

    My take was to give myself the best odds, sometimes it works, sometimes it doesn't. In my case it didn't work.

    It is good to understand the whole process. I know that Dr. Susan Love's Breast Cancer book is rather old (2005), but it does have the basic information in it. What is missing is the additional drugs that have come out in the ensuing years such as the newer combo of Aromasin and Afinitor or the use of estradiol to re sensitize AI's and etc.

    Sorry, I don't know about stats on those who didn't do hormonal therapy.

    Best to you,

    Doris
  • Marcia527
    Marcia527 Member Posts: 2,729
    I did Tamoxifen for 9 months
    I did Tamoxifen for 9 months and Aromasin for 2 1/2 years. I was diagnosed in 2003. But each of us are different. I was told these meds weren't helping me that much. Just slightly helping. So I quit taking anything in Oct. 2007. But that is me. You might talk to your doc about how helpful it would be to you and at least try it. You might not have bad side effects.
  • Lynn Smith
    Lynn Smith Member Posts: 1,264 Member
    Marcia527 said:

    I did Tamoxifen for 9 months
    I did Tamoxifen for 9 months and Aromasin for 2 1/2 years. I was diagnosed in 2003. But each of us are different. I was told these meds weren't helping me that much. Just slightly helping. So I quit taking anything in Oct. 2007. But that is me. You might talk to your doc about how helpful it would be to you and at least try it. You might not have bad side effects.

    I take tamoxifin
    I take tamoxifin.I have been for just over a year.Don't see any problems like I worried about before taking it.I had think hair before and it is still thin or maybe a tad thinner.Hard to tell.At least no bald places.

    I was hesitant in taking tamoxfin.I am the worst when it comes to taking new meds(and after reading the horrible side effects of all meds)I pondered a few weeks.Then just took it.Did fine.I am bad about forgetting this pill.I told my doctor I miss a few a month other than that faithful.She said not good to miss any.Now I am really on it.I was dx with DCIS Stage 0 and non invasive.My oncologist is very adamant I keep on it and don't slack even missing one pill.

    I have another 3 years and I'm gonna make sure I take this little pill from now on.No more forgetting. Although they say that can be a side effect taking tamox.My husband thinks I am getting forgettful but he knows I have alot on my plate and blames that also.

    Lynn Smith
  • Lynn Smith
    Lynn Smith Member Posts: 1,264 Member

    I take tamoxifin
    I take tamoxifin.I have been for just over a year.Don't see any problems like I worried about before taking it.I had think hair before and it is still thin or maybe a tad thinner.Hard to tell.At least no bald places.

    I was hesitant in taking tamoxfin.I am the worst when it comes to taking new meds(and after reading the horrible side effects of all meds)I pondered a few weeks.Then just took it.Did fine.I am bad about forgetting this pill.I told my doctor I miss a few a month other than that faithful.She said not good to miss any.Now I am really on it.I was dx with DCIS Stage 0 and non invasive.My oncologist is very adamant I keep on it and don't slack even missing one pill.

    I have another 3 years and I'm gonna make sure I take this little pill from now on.No more forgetting. Although they say that can be a side effect taking tamox.My husband thinks I am getting forgettful but he knows I have alot on my plate and blames that also.

    Lynn Smith

    Correction
    Above I meant to say I've been on tamoxifin just over 2 years.I said just over a year.

    Lynn Smith
  • helen e
    helen e Member Posts: 223
    I've taken it for 2 1/2 years
    and yes there have been some side effects like hot flashes and my cycle stopping (not that I'm missing that) it did increase my migraine's but there are meds that help with those. I am still going to take it even though I wish I didn't have to. If they told me that I had to take it for the rest of my life I would, I plan on living long enough to be a pain to my kids. That's the only way I know to get them back for what they're putting me through now in their teenage years (14 & 16). Love them to death but will enjoy seeing them get some of their own back. Take care.

    Helen
  • ellenm4
    ellenm4 Member Posts: 124
    I said NO
    Dx 2008 stage 2b left breast. I took Tamoxifen for a little less than a year and finally told onc...NO more! I had every side effect and more!! Not everyone is the same. We all have some or a lot of side effects. You do not know unless you try it first. When I started having the hot flashes, night sweats and joint pain...I thought it would pass. After several months I was having my own Gobal Warming! Living in hot and humid Texas weather I thought I would burst into flames if I walked outside! LOL Some nights I would take 2 showers and change the bed sheets several times as well. It was that bad. The joint pain got so bad that even the souls of my feet hurt and I could hardly walk without help. My hair did thin very little, but that did stop after a few months. About 3 months after I stopped taking it I began to feel normal again. I an still dancing with NED from breast cancer, but have started a new journey with Lung cancer. I guess what I am saying is that you should make this choice. I may have a few symptoms for a few months and then it gets better....but you do not know if you do not try. Good Luck with your treatment and may God bless us all!
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    I thought tamoxifen was NOT
    I thought tamoxifen was NOT hormone Therapy...mmmmm interesting I have been on it since /aug 2008-I had been post meno prior...abouat 2 1/2 yrs into it..I started to bleed. (prior I was having internal ultrasound followed by D & C @ time about every 6mths) I was taken off tamoxifen for about 2mths still issue so had total hysterctomy May 2011 (Thickening of uterus) all good now and back on tamoxifen...I think I have 18mths or so to go...taking it..

    Denise

    other wise no side effects to speak of...except (not sure if related) I get very very painful leg cramps at night...in calf(s) a lot
  • deeb111
    deeb111 Member Posts: 141 Member
    horror show from tamoxifen
    i have been taking this for 7 months and depression getting worse leg cramps and just joint pain all over fatigue see if at all possible to avoid this i am trying to get off it not to scare you but i want you to know truth and some people dont get any side effects good luck
  • Rague
    Rague Member Posts: 3,653 Member

    I thought tamoxifen was NOT
    I thought tamoxifen was NOT hormone Therapy...mmmmm interesting I have been on it since /aug 2008-I had been post meno prior...abouat 2 1/2 yrs into it..I started to bleed. (prior I was having internal ultrasound followed by D & C @ time about every 6mths) I was taken off tamoxifen for about 2mths still issue so had total hysterctomy May 2011 (Thickening of uterus) all good now and back on tamoxifen...I think I have 18mths or so to go...taking it..

    Denise

    other wise no side effects to speak of...except (not sure if related) I get very very painful leg cramps at night...in calf(s) a lot

    HT - not HRT
    As it was explained me - all the estrogen blockers are considered Hormone Therapy. The different ones work somewhat differently but all effect hormones. Hormone Therapy should not be confused the Hormone Replacement Therapy for post menapausal women - totally different - one blocks estrogen the other adds it.

    Susan
  • EveningStar2
    EveningStar2 Member Posts: 491 Member
    As everyone
    has said: its different for everyone. I had DCIS and my oncologist left it up to me. I had the testing and I apparently metabolize it. I took it for 6 months with bad leg cramping but no other side effects. I had a pulmonary embolism shower (i.e. lots of blood clots in my lungs) and the hospitalist felt it was from the tamoxifen and could I stop taking it. He speak with my oncologist but my reaction was:" quit taking the drug that tried to kill me? Ya, I can do that." I'm still on oxygen at night but otherwise OK and not taking any hormone therapy. A little over 3 years from diagnosis and I'm still dancing with NED.

    Maureen
  • jennetteh
    jennetteh Member Posts: 3
    omg....I am exactaly there,
    omg....I am exactaly there, really thinking of not doing it. Please let me know what you find out, I have a few weeks before I have to make the decision, I am really leaning on not doing it. Jennette
  • cinnamonsmile
    cinnamonsmile Member Posts: 1,187 Member
    Some women get their ovaries
    Some women get their ovaries taken out to remove estrogen from their bodies as well.
  • eddiejr.
    eddiejr. Member Posts: 2
    deeb111 said:

    horror show from tamoxifen
    i have been taking this for 7 months and depression getting worse leg cramps and just joint pain all over fatigue see if at all possible to avoid this i am trying to get off it not to scare you but i want you to know truth and some people dont get any side effects good luck

    if a drug makes living not
    if a drug makes living not worth living than why do it
  • madsters1
    madsters1 Member Posts: 120
    jennetteh said:

    omg....I am exactaly there,
    omg....I am exactaly there, really thinking of not doing it. Please let me know what you find out, I have a few weeks before I have to make the decision, I am really leaning on not doing it. Jennette

    hormone therapy
    Hi Jennette,
    I saw on your reply to my post that you were also indecisive about hormone therapy and wanted me to let you know my decision. I don't know if you've already made your decision, but I still have some time as I have just decided to have radiation. I have to let you know that I have fought the doctors on EVERY step of this nightmare. As you now know, cancer leaves us with really no control. Yes, we can say no to any and all of the prescribed treatments, but the possibility of a recurrence haunts us. Having no control absolutely put me in a crazy panick!! You probably won't understand this. I have a hard time myself, but having cancer and the consequent lack of control triggered many childhood abuse memories that I thought I had dealt with. Yikes!! Cancer AND abuse memories! Long, long story short, God is doing a work from the inside out and using (not causing) this cancer to heal another "wound".
    So, knowing that the treatments are to help me, I have decided to at least try the hormone therapy. If the first doesn't work for me, I'll try something else. If it affects my quality of life, I won't do them anymore. But how will we know unless we try. We DON'T want to get down the road and God forbid have a recurrence and think maybe we coud've done something to prevent it.
    I know this was very personal and probably strange, but I hope it helps you to make the decision that's right for you. God bless, Victoria (madsters)
  • jendrey
    jendrey Member Posts: 377

    Some women get their ovaries
    Some women get their ovaries taken out to remove estrogen from their bodies as well.

    I refused to take it.

    Awhile back, I was at the AstraZeneca website and I read that they no longer manufacture the drug and they also stated that there are better drugs than tamoxifen available now.

    Tamoxifen is on my state's list* of known cancer causing agents. Hmm, do I really want to take something that has a track history of causing cancer to prevent cancer? Well, gee lemme think that one over; seems logical...

    Horrendous side effects notwithstanding. I still have a lot of pain caused from the chemotherapy.

    Ultimately, you have to decide what's right for you.

    (((Hugs)))


    *http://oehha.ca.gov/prop65/prop65_list/files/P65single021712.pdf

    see page 20