Any one give up 0n tamixifen?????????????

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tasha_111
tasha_111 Member Posts: 2,072
edited March 2014 in Breast Cancer #1
I am having to sleep on a bath towel, can't drive can't function.............HELP!

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  • phoenixrising
    phoenixrising Member Posts: 1,508
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    wow
    You must be getting SOME hot flashes. It can be unbearable but some women are taking effexor with success for the hot flashes and some get relief from gabapentin. I've been off Tamoxifen for about 2 mos now due to se. Primarily my eyes were very dry, sore, burning with fatigue. I will either go on a lower dose or an AI, it's not decided yet.

    Have you thought of getting your cyp2D6 checked to see if you are metabolizing it properly?

    I did and found I am an intermediate metabolizer which means I only have 1 out of 2 pathways working. Some people say that if you have se then it's working and maybe it is. But maybe the dosage is too high. At least that's what I felt the problem was with me. Not metabolizing it fast enough. You need this enzyme to metabolize Tamoxifen to endoxifen which is the real medicine. Some people are poor metabolizers and are wasting their time taking it at all.

    This is all relatively new and many oncs don't know how to interpret the results (like mine).
    I was in a deep depression till I split my pill and took half in the am and half in the pm.
    That told me I wasn't metabolizing it right.

    I hope this has helped and if there is anything more I can do let me know.

    jan
  • creampuff91344
    creampuff91344 Member Posts: 988
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    wow
    You must be getting SOME hot flashes. It can be unbearable but some women are taking effexor with success for the hot flashes and some get relief from gabapentin. I've been off Tamoxifen for about 2 mos now due to se. Primarily my eyes were very dry, sore, burning with fatigue. I will either go on a lower dose or an AI, it's not decided yet.

    Have you thought of getting your cyp2D6 checked to see if you are metabolizing it properly?

    I did and found I am an intermediate metabolizer which means I only have 1 out of 2 pathways working. Some people say that if you have se then it's working and maybe it is. But maybe the dosage is too high. At least that's what I felt the problem was with me. Not metabolizing it fast enough. You need this enzyme to metabolize Tamoxifen to endoxifen which is the real medicine. Some people are poor metabolizers and are wasting their time taking it at all.

    This is all relatively new and many oncs don't know how to interpret the results (like mine).
    I was in a deep depression till I split my pill and took half in the am and half in the pm.
    That told me I wasn't metabolizing it right.

    I hope this has helped and if there is anything more I can do let me know.

    jan

    Wow
    Jan, I am on Femara, and am having horrible side effects, as well. Biggest problem is with depression, and this just has me in a tailspin. As Femara only comes in one size pill, this means that anyone on the drug, no matter what their body weight, is getting the same dosage. I am thinking that maybe trying to take 1/2 a pill daily to see what the effects would be may be an option. Haven't taken the drug for almost a week, and my side effects have all but gone away, so know it is the Femara. If that doesn't work, I will probably just stop the drug, and visit with my doctor on the 9th of December to discuss changing my meds. This stuff is awful, but what do you do if not follow doctors instructions. I am just about ready to stop it altogether. Wish they had some long term stats as to what the drug does to your body on a permanent basis, as I know the short term side effects are not making things easy. Are they suggesting you get on something else since you are off of Tamoxifen?

    Hugs,

    Judy
  • phoenixrising
    phoenixrising Member Posts: 1,508
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    Wow
    Jan, I am on Femara, and am having horrible side effects, as well. Biggest problem is with depression, and this just has me in a tailspin. As Femara only comes in one size pill, this means that anyone on the drug, no matter what their body weight, is getting the same dosage. I am thinking that maybe trying to take 1/2 a pill daily to see what the effects would be may be an option. Haven't taken the drug for almost a week, and my side effects have all but gone away, so know it is the Femara. If that doesn't work, I will probably just stop the drug, and visit with my doctor on the 9th of December to discuss changing my meds. This stuff is awful, but what do you do if not follow doctors instructions. I am just about ready to stop it altogether. Wish they had some long term stats as to what the drug does to your body on a permanent basis, as I know the short term side effects are not making things easy. Are they suggesting you get on something else since you are off of Tamoxifen?

    Hugs,

    Judy

    Hi Judy
    I've read some people are splitting their AI's due to se or taking it every other day. Have you tried Tamoxifen?? Dec 9th isn't too far away, for you to discuss it with your onc. Some people switch to another AI and get better results. Have you tried the others.

    They want me to go on an AI with Zometa. I think I would do the AI if I could without the Zometa, but with osteo I pretty much have to. Kinda feels like they want me to put my hand back on the burner and I am such a BABY. Whine, whine, whine.

    Did you say you had your D levels checked?

    Let us know how you make out on the 9th.

    love
    jan
  • creampuff91344
    creampuff91344 Member Posts: 988
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    Hi Judy
    I've read some people are splitting their AI's due to se or taking it every other day. Have you tried Tamoxifen?? Dec 9th isn't too far away, for you to discuss it with your onc. Some people switch to another AI and get better results. Have you tried the others.

    They want me to go on an AI with Zometa. I think I would do the AI if I could without the Zometa, but with osteo I pretty much have to. Kinda feels like they want me to put my hand back on the burner and I am such a BABY. Whine, whine, whine.

    Did you say you had your D levels checked?

    Let us know how you make out on the 9th.

    love
    jan

    Side Effects
    I have had my D levels checked, and am taking calcium +D, and also D3. Blood work next week will tell if these are working. I have been on a Femara vacation for about a week, and the depression has subsided, so I know it must be the drug. Haven't tried taking 1/2 pill, or every other day, so will discuss that with my onc. Will let everyone know how my visit next week goes. Also, have my first mammogram on the 15th of December, and am getting anxious about that as well. Seems like this dread is never ending, but I do feel better off of Femara. Just wish I could take it and not whine, but QOL is important at this juncture of my life. Everyone here is so brave to just fight through, which makes me feel like a whimp. We keep plugging along, however.

    Hugs,
    Judy
  • KathiM
    KathiM Member Posts: 8,028 Member
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    Side Effects
    I have had my D levels checked, and am taking calcium +D, and also D3. Blood work next week will tell if these are working. I have been on a Femara vacation for about a week, and the depression has subsided, so I know it must be the drug. Haven't tried taking 1/2 pill, or every other day, so will discuss that with my onc. Will let everyone know how my visit next week goes. Also, have my first mammogram on the 15th of December, and am getting anxious about that as well. Seems like this dread is never ending, but I do feel better off of Femara. Just wish I could take it and not whine, but QOL is important at this juncture of my life. Everyone here is so brave to just fight through, which makes me feel like a whimp. We keep plugging along, however.

    Hugs,
    Judy

    What, ME, brave?????
    I'm like Jan....osteoporotic....so I couldn't take the AI's...

    I had rectal cancer first, with 25 days of radiation directly to my hips and tailbone...my long-term osteopenia (had it for years, never changed) plunged into osteoporosis. I also had a surgical hysterectomy with this fight, so I was in immediate full menopause, complete with a jacuzzi for a bed every night. It got better around month 3. Now, 2 years later, my side effects are down to an occasional hot flash...and who's to say that is from the Tamoxifen?

    Quality of Life should always be important. Our complaining fuels research. As Jan shared, there is a test to see how well your metabolizing is working...WOW!!!! That is BIG!!!

    I'm sending hugs for the mammo...I still get nervous, 3 years plus, when it happens. The cool thing is the new digital scans....you get the news right then...or at least you do if you bribe the tech (who, me????)....rofl!

    Hugs, Kathi
  • tasha_111
    tasha_111 Member Posts: 2,072
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    KathiM said:

    What, ME, brave?????
    I'm like Jan....osteoporotic....so I couldn't take the AI's...

    I had rectal cancer first, with 25 days of radiation directly to my hips and tailbone...my long-term osteopenia (had it for years, never changed) plunged into osteoporosis. I also had a surgical hysterectomy with this fight, so I was in immediate full menopause, complete with a jacuzzi for a bed every night. It got better around month 3. Now, 2 years later, my side effects are down to an occasional hot flash...and who's to say that is from the Tamoxifen?

    Quality of Life should always be important. Our complaining fuels research. As Jan shared, there is a test to see how well your metabolizing is working...WOW!!!! That is BIG!!!

    I'm sending hugs for the mammo...I still get nervous, 3 years plus, when it happens. The cool thing is the new digital scans....you get the news right then...or at least you do if you bribe the tech (who, me????)....rofl!

    Hugs, Kathi

    Give up on tamoxifen?
    Hi All And thanks for your input. I went to my GP yesterday, he Says NO to giving up Tamoxifen (I can kinda see why and I can live with the side effects) But he (Like me) thinks the side effects of effexor are giving me the Hump.........So I am coming off that, It gives me tremors and I can't eat, and I am suicidal (before I started taking Effexor I was merely depressed) i Know this is this drug that is doing this to me, So I have to get off it A.S.A.P....I am NOT a suicide prospect. Never have been. Thanks again for all your help
    julia XXXXXXXX
  • KathiM
    KathiM Member Posts: 8,028 Member
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    tasha_111 said:

    Give up on tamoxifen?
    Hi All And thanks for your input. I went to my GP yesterday, he Says NO to giving up Tamoxifen (I can kinda see why and I can live with the side effects) But he (Like me) thinks the side effects of effexor are giving me the Hump.........So I am coming off that, It gives me tremors and I can't eat, and I am suicidal (before I started taking Effexor I was merely depressed) i Know this is this drug that is doing this to me, So I have to get off it A.S.A.P....I am NOT a suicide prospect. Never have been. Thanks again for all your help
    julia XXXXXXXX

    Nope, not an option!!!
    You have beat the beast! Suicide is not even on the list of available options!!!

    You are a fighter AND a survivor!!!

    Hugs, Kathi
  • mmontero38
    mmontero38 Member Posts: 1,510
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    Julia, have you asked your
    Julia, have you asked your oncologist about taking 10 mg twice a day instead of 20 mg once a day. Someone else also had this problem and it seems that by splitting up the dose, her moods improved. I am also on Tamoxifen now for 1 year and I do suffer night sweats now not as bed as in the beginning, so I have tried the following and it seems to help.
    1) I sleep with summer night gown and not pajamas.
    2) I leave my bedroom window opened a crack now that it's cold and it seems to help.
    3) I don't drink alcoholic beverages before going to bed and limit myself to 1 glass of wine at dinner.
    4) I have lowered the thermostat so that it's cooler.
    5) I keep a glass of water by my bed and when the night sweat wakes me up I take a few sips and it helps me cool down. Of course, I am then running to the bathroom. LOL

    Unfortunately, it's not only the medications we are on but also the fact that we are now officially into menopause and for some of us too abruptly. So our bodies are trying to adapt to that. I hope your body starts adapting soon. Love, Lili
  • kit45
    kit45 Member Posts: 89
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    Julia, have you asked your
    Julia, have you asked your oncologist about taking 10 mg twice a day instead of 20 mg once a day. Someone else also had this problem and it seems that by splitting up the dose, her moods improved. I am also on Tamoxifen now for 1 year and I do suffer night sweats now not as bed as in the beginning, so I have tried the following and it seems to help.
    1) I sleep with summer night gown and not pajamas.
    2) I leave my bedroom window opened a crack now that it's cold and it seems to help.
    3) I don't drink alcoholic beverages before going to bed and limit myself to 1 glass of wine at dinner.
    4) I have lowered the thermostat so that it's cooler.
    5) I keep a glass of water by my bed and when the night sweat wakes me up I take a few sips and it helps me cool down. Of course, I am then running to the bathroom. LOL

    Unfortunately, it's not only the medications we are on but also the fact that we are now officially into menopause and for some of us too abruptly. So our bodies are trying to adapt to that. I hope your body starts adapting soon. Love, Lili

    side effects
    I too am on tamoxifen for almost 3 months now and I can't stand waking up every night at 2:00 A.M. drenched with sweat and not able to go back to sleep for an hour or two. I am 45 and with BC am in early menopause and not liking this one bit. I will take up Lili's suggestion of asking my onc to split the dose. Maybe that will help. Otherwise I'm just putting up with these side effects hoping one day they will subside a little. Any suggestions are much appreciated. the summer nightgown helps and I sleep with a fan on. Love, Kit
  • tasha_111
    tasha_111 Member Posts: 2,072
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    kit45 said:

    side effects
    I too am on tamoxifen for almost 3 months now and I can't stand waking up every night at 2:00 A.M. drenched with sweat and not able to go back to sleep for an hour or two. I am 45 and with BC am in early menopause and not liking this one bit. I will take up Lili's suggestion of asking my onc to split the dose. Maybe that will help. Otherwise I'm just putting up with these side effects hoping one day they will subside a little. Any suggestions are much appreciated. the summer nightgown helps and I sleep with a fan on. Love, Kit

    Thanks
    Kathi, Lili Kit Thank you.............