Scared to start Tamoxifin

elm3544
elm3544 Member Posts: 748
edited March 2014 in Breast Cancer #1
I am supposed to start tody and after reading all the side effects, I'm scared!
The bottle says take 2 a day. The pharmacist said take it twice a day. Is it better to take both once a day or one twice a day? I am afraid of the mood swings and the depression and I am afraid to have to take an anti depressant. Do the side effects begin right away or does it take time?

Comments

  • Kristin N
    Kristin N Member Posts: 1,968 Member
    Haven't taken it yet
    I am not taking tamox at this time Elm. I also am afraid of the side effects and the percentage of it helping me is very small. I think it is a very personal decision for everyone. Some take it, some don't. You just need to do what is right and best for you. Good luck in whatever you decide!

    Kristin ♥
  • TraciInLA
    TraciInLA Member Posts: 1,994 Member
    You have to just be brave and start somewhere
    Elm, please try not to stress too much about this -– remember, when and how you take the Tamoxifen isn’t carved in stone forever. It can always be changed, anytime, to help manage your side effects. You just have to start somewhere, to see how you do, and then you and your doctor can adjust the dose as needed.

    Some women take 10 mg twice a day, morning and night, some take 20 mg in the morning or at night. I’ve been on Tamoxifen for about 6 weeks. My doctor had me start with the 20 mg at night; on the 2nd night I took it, I started waking up all night long, every night, with hot flashes. My doctor had me switch to taking it in the morning instead -– I’ve now been doing that for about 2 weeks, and, to my surprise, I don’t think I’ve had a single hot flash, not even during the day.

    Every woman reacts differently, of course, but many women have no trouble at all with Tamoxifen, and I can honestly say I haven’t had any other side effects so far. So let’s hope that you do as well -– you just have to start!

    Traci
  • marywest
    marywest Member Posts: 132
    Kristin N said:

    Haven't taken it yet
    I am not taking tamox at this time Elm. I also am afraid of the side effects and the percentage of it helping me is very small. I think it is a very personal decision for everyone. Some take it, some don't. You just need to do what is right and best for you. Good luck in whatever you decide!

    Kristin ♥

    prescription un-filled
    I was given a prescription last week for this, its still in my purse. I had a real bad reaction (side affects) to armidex, so she prescribed tamox. I can not bring myself to have this prescription filled. I am so un-decided. I continue to read posts regardng it and continue to be confused. I am now thinking, I might try it, I can always quit. When I was first diagnosed with BC the first thing I did was go and see a natural medicine doctor, naturalpath? Not sure what to call them. She got all my paperwork from my doctor to see exactly the chemo and other meds I would be on so she could make a better judgment of what vitamins etc to put me on. I wanted to be healthy throughout all of the treatments I was about to go on. Not once during all the chemo or radiation tmts did I get a cold or flu. I was sick from chemo and had medicine to help with that. I remained healthy. I had to drive a 4hr drive to see all of these doctors, live in Alaska and the pass can be dangerous. Recently I saw a chineese doctor in my area to avoid the long drives. I wanted to know what to take in place of tamox in order to stay healthy. That was a mistake! Just wondering is there anything in this huge world of ours to take that is good for the body besides tamoxifen. I will continue to read posts but I think the bottom line is, there might be side affects might not, might stop bc from coming back, might not. I am looking for a straight up answer, but straight up I am still confused. Still searching for answers, wish I could help you, but I will continue to read other posts on this subject. God Bless, hope your able to make the right decision. (me to)
  • jennytwist
    jennytwist Member Posts: 896
    TraciInLA said:

    You have to just be brave and start somewhere
    Elm, please try not to stress too much about this -– remember, when and how you take the Tamoxifen isn’t carved in stone forever. It can always be changed, anytime, to help manage your side effects. You just have to start somewhere, to see how you do, and then you and your doctor can adjust the dose as needed.

    Some women take 10 mg twice a day, morning and night, some take 20 mg in the morning or at night. I’ve been on Tamoxifen for about 6 weeks. My doctor had me start with the 20 mg at night; on the 2nd night I took it, I started waking up all night long, every night, with hot flashes. My doctor had me switch to taking it in the morning instead -– I’ve now been doing that for about 2 weeks, and, to my surprise, I don’t think I’ve had a single hot flash, not even during the day.

    Every woman reacts differently, of course, but many women have no trouble at all with Tamoxifen, and I can honestly say I haven’t had any other side effects so far. So let’s hope that you do as well -– you just have to start!

    Traci

    I've been on it
    since Sept. I too, wasn't sure although my Dr said I had "no choice" My chances for recurrance were higher so he said I have to take it. I take both my pills (20 mg) in the a.m. The chemo put me into menopause so I'm hot flashing all over the place. I also take effexor so that helps with the hot flashes and the mood stuff - I just try to trust my Dr. and realize I'm doing what I can to fight this! We all react differently - if I had, had another option I probably would have taken it but since I don't at this point I'll do whatever I can.
    Ask your Dr lots of questions - as stated by the others, you can always try it and if it's really not a good match you'll know and can quit.
    Take care -
    much love,
    Jenny
  • helen e
    helen e Member Posts: 223
    Tamox
    I started taking tamoxifen about 3 weeks ago. I expected all of these bad side effects to start right away. So far a was a little more crankier than usual when I got home from work and have had a total of about 3 hotflashes. Otherwise, I have been fine. I did have trouble with the Lyrica I was put on for my nerve pain after my lumpectomy but I stopped that and the problem went away. I wasn't thrilled to be taking tamox. but I was even less thrilled with the thought of the cancer coming back! Good luck and I wish you good luck with the meds.

    Helen
  • ppurdin
    ppurdin Member Posts: 1,181
    Tamoxifin
    I will see my Cancer dr. Jan, 4th.And she will prescribe this med.And like you I am very unshure about it also.I will have to take it 5yrs.I two think it is a personal decision.Good luck,keep us posted.(Pat).
  • tgf
    tgf Member Posts: 950 Member
    ppurdin said:

    Tamoxifin
    I will see my Cancer dr. Jan, 4th.And she will prescribe this med.And like you I am very unshure about it also.I will have to take it 5yrs.I two think it is a personal decision.Good luck,keep us posted.(Pat).

    tamoxifen
    I also carried my prescription around for a few weeks ... but I also kept remembering what my oncologist said ... and that was ... I MUST take it.

    I was really concerned about the whole thing ... mainly because of recent news about the effects of certain anti-depressants and tamoxifen. I had been taking 2 of the "no-no" anti-depressants so I was really afraid to change. I'd finally found something that worked and I didn't want to switch ... to the point that I wanted to stay on my dependable anti-depressants and NOT take tamoxifen. As I said ... the doctor told me I MUST take tamoxifen. So ... I switched anti-depressants ... to effexor ... and I am pleasantly surprised that I feel fine!!!!!!

    So ... I started tamoxifen about 6 weeks ago and so far so good. I'm only on 20mg a day ... and in an effort to minimize any side-effects ... I take 10mg. in the morning and 10mg. at night. So far I haven't had any side effects that I know of... no hot flashes etc.


    hugs.
    teena
  • Ritzy
    Ritzy Member Posts: 4,381 Member
    tgf said:

    tamoxifen
    I also carried my prescription around for a few weeks ... but I also kept remembering what my oncologist said ... and that was ... I MUST take it.

    I was really concerned about the whole thing ... mainly because of recent news about the effects of certain anti-depressants and tamoxifen. I had been taking 2 of the "no-no" anti-depressants so I was really afraid to change. I'd finally found something that worked and I didn't want to switch ... to the point that I wanted to stay on my dependable anti-depressants and NOT take tamoxifen. As I said ... the doctor told me I MUST take tamoxifen. So ... I switched anti-depressants ... to effexor ... and I am pleasantly surprised that I feel fine!!!!!!

    So ... I started tamoxifen about 6 weeks ago and so far so good. I'm only on 20mg a day ... and in an effort to minimize any side-effects ... I take 10mg. in the morning and 10mg. at night. So far I haven't had any side effects that I know of... no hot flashes etc.


    hugs.
    teena

    Tamox :(
    I haven't taken mine yet and might not either. I don't like taking something which has such dangerous side effects, including cancer. And, so many women seem to have gynecological problems with it and I don't want a hysterectomy or a partial or anything like that. And, several on here took it and still got a recurrence, so, I just don't know. Very confusing. Everyone just has to do what they want and not do what someone says they do or that you have to do.

    Sue :)
  • dyaneb123
    dyaneb123 Member Posts: 950
    Ritzy said:

    Tamox :(
    I haven't taken mine yet and might not either. I don't like taking something which has such dangerous side effects, including cancer. And, so many women seem to have gynecological problems with it and I don't want a hysterectomy or a partial or anything like that. And, several on here took it and still got a recurrence, so, I just don't know. Very confusing. Everyone just has to do what they want and not do what someone says they do or that you have to do.

    Sue :)

    I was just talking to my
    I was just talking to my Onc. today as to whether to change from arimidex , which is really giving me bad joint pain, to Tamox. For me, the Tamox sounds like the better drug.We're going to stick with the arimidex for a couple of months and see if it gets better....but
    the Arim. can cause osteoporosis along with the joint pain...and the Tamox. actually strengthens bones. The Tamox. is bad for women who still have their uterus, but I don't.
    I've never been on antidepressants, so I think for me the Tamox. is the better drug. I hope so anyway. I hate the effects of the Arimidex.
  • crselby
    crselby Member Posts: 441
    dyaneb123 said:

    I was just talking to my
    I was just talking to my Onc. today as to whether to change from arimidex , which is really giving me bad joint pain, to Tamox. For me, the Tamox sounds like the better drug.We're going to stick with the arimidex for a couple of months and see if it gets better....but
    the Arim. can cause osteoporosis along with the joint pain...and the Tamox. actually strengthens bones. The Tamox. is bad for women who still have their uterus, but I don't.
    I've never been on antidepressants, so I think for me the Tamox. is the better drug. I hope so anyway. I hate the effects of the Arimidex.

    Tamox or not to Tamox
    I am not a pill kind of person, including vitamins! The thought of taking a pill for FIVE years about bowled me over. At first, I said no thank you. But I have reconsidered. I am on 20 mg per day. No directions as to when to take it.

    Statistically it should reduce any NEW breast cancers in my case. Going from 15% (after surgery and radiation) to 6%. That's worth it to me. The side effects of uterine cancer and/or blood clots are very small, smaller than recurrance.

    Hot flashes? Had 'em for the last 10 years, waking several times a night, from normal MENOPAUSE. I've adjusted. Tried hormone replacement therapy over 3 years, ending 4 years ago. No change in the hot flashes. That's probably what caused my breast cancer! So, I have not had any treatment for the hot flashes for 10 years.

    Started Tamox three weeks ago and they haven't changed. However, the vaginal dryness that arose last week is awful. PCP says it's not any kind of an infection, so it must be dryness brought on by the Tamox. Between that and hot flashes when my husband gets near me, our sex life is down to nothing. But haven't given up.

    My advice: take it.
  • DebbyM
    DebbyM Member Posts: 3,289 Member
    crselby said:

    Tamox or not to Tamox
    I am not a pill kind of person, including vitamins! The thought of taking a pill for FIVE years about bowled me over. At first, I said no thank you. But I have reconsidered. I am on 20 mg per day. No directions as to when to take it.

    Statistically it should reduce any NEW breast cancers in my case. Going from 15% (after surgery and radiation) to 6%. That's worth it to me. The side effects of uterine cancer and/or blood clots are very small, smaller than recurrance.

    Hot flashes? Had 'em for the last 10 years, waking several times a night, from normal MENOPAUSE. I've adjusted. Tried hormone replacement therapy over 3 years, ending 4 years ago. No change in the hot flashes. That's probably what caused my breast cancer! So, I have not had any treatment for the hot flashes for 10 years.

    Started Tamox three weeks ago and they haven't changed. However, the vaginal dryness that arose last week is awful. PCP says it's not any kind of an infection, so it must be dryness brought on by the Tamox. Between that and hot flashes when my husband gets near me, our sex life is down to nothing. But haven't given up.

    My advice: take it.

    I am still on the fence as
    I am still on the fence as to whether or not to take it. It won't reduce my chance of a recurrence by much. I think my oncologist said maybe1 to 2%. Well, 1 or 2% to me, isn't much, so, I will probably not take it. But, I know to others, that is huge. My oncologist says I am cured, cancer free. I had the lumpectomy, stage1, nodes clean and radiation treatments. So, I feel I have done everything necessary to secure a healthy future for me.

    Do what you feel you want to do. And, if you take it, you can always stop if you have too many side effects. Or, don't take it and just live your life as you would otherwise.

    Good luck!

    Debby
  • elm3544
    elm3544 Member Posts: 748
    Well I guess I'm not the
    Well I guess I'm not the only one who is hesitant. Even if the Dr said I have to take it, in the end it is my choice. I have waited all day and I think I might go ahead and try taking it tonight. I still feel like I must do everything I can to try and prevent a reoccurance. I talked to my husband and he feels the same way. And like it was stated, I can always stop. I can't thank you all enough for responding to this post. It helped me so much.
  • Akiss4me
    Akiss4me Member Posts: 2,188
    tgf said:

    tamoxifen
    I also carried my prescription around for a few weeks ... but I also kept remembering what my oncologist said ... and that was ... I MUST take it.

    I was really concerned about the whole thing ... mainly because of recent news about the effects of certain anti-depressants and tamoxifen. I had been taking 2 of the "no-no" anti-depressants so I was really afraid to change. I'd finally found something that worked and I didn't want to switch ... to the point that I wanted to stay on my dependable anti-depressants and NOT take tamoxifen. As I said ... the doctor told me I MUST take tamoxifen. So ... I switched anti-depressants ... to effexor ... and I am pleasantly surprised that I feel fine!!!!!!

    So ... I started tamoxifen about 6 weeks ago and so far so good. I'm only on 20mg a day ... and in an effort to minimize any side-effects ... I take 10mg. in the morning and 10mg. at night. So far I haven't had any side effects that I know of... no hot flashes etc.


    hugs.
    teena

    Hi Teena...
    Do you remember what the no no antidepressants were? I thought I had saved the list and now I can't find it. But she did put me on Lexipro (miracle drug!!) and wants to switch me to Arimidex in Feb. I am doing excellent on the Tamoxifen and hate to switch. All SE's were gone after 1st month with just an occassional hot flash. But I did have my ovaries removed and think this is why she wants to do the switch. In that case, I can stay on the Lexipro, right? She did mention the joint aches on Arimidex and after hearing about that one, I wish they could keep me on the Tamoxifen (lesser of two evils). Plus I already have osteopeana and am afraid Arimedex will put me into full blown osteoperosis. Worse, I can not take any drug that contains Bisophosphanates (sp) to rebuild bone. Ughh...always a challange, huh? Pammy
  • elm3544
    elm3544 Member Posts: 748
    OK so far
    I started my Tamoxifin on Nov. 30. I have been taking both in the evening. I can't tell if they are causing any side effects or not. I have been rather weepy in the last few days, could that be from the Tamoxifin? Otherwise haven't noticed anything yet.
  • Eil4186
    Eil4186 Member Posts: 949
    I have been taking it for
    I have been taking it for about 3 years. The side effects are not too bad. It has suppressed my period this whole time. About the most annoying thing is a vaginal discharge. It causes an acceleration of cell division in the uterine lining. Your body sloughs this off as discharge.
  • DianeBC
    DianeBC Member Posts: 3,881 Member
    Eil4186 said:

    I have been taking it for
    I have been taking it for about 3 years. The side effects are not too bad. It has suppressed my period this whole time. About the most annoying thing is a vaginal discharge. It causes an acceleration of cell division in the uterine lining. Your body sloughs this off as discharge.

    I am scared too Elm and
    I am scared too Elm and because of that, I have delayed taking it. I think the uterine cancer and the blood clots is super terrifying! Good luck to you.

    Hugs, Diane ♥
  • crselby
    crselby Member Posts: 441
    Eil4186 said:

    I have been taking it for
    I have been taking it for about 3 years. The side effects are not too bad. It has suppressed my period this whole time. About the most annoying thing is a vaginal discharge. It causes an acceleration of cell division in the uterine lining. Your body sloughs this off as discharge.

    helpful info
    Thanks, Eil4186. Your post contained more information than I could get out of my oncologist! So THAT'S why one possible side effect is vag discharge! What else should we know?
  • Taina
    Taina Member Posts: 166
    i just started
    Elm, hello.
    I just started taking the pill 1 wk ago.
    Tamoxifen 20mg once a day.
    The 1st day i took it at night, couldn't sleep and night sweets.
    after that i swicth taking it in the morning.
    I get headaches and feel like morning sickness but i guess is
    until i get use to it. I have a f/up appt with my doctor
    in 3 wks to see how i'm doing.
    No mood swings or depression....
    good luck...