Tamoxifin
Comments
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Hi Sandy! Welcome! I,too, am on Tamoxifen. I've been on since Oct. 2000. I have hot flashes on and off all day and night. I'm 50. It's also put me into immed. menopause which I must admit, I don't mind too much. Because we don't want to add any more estrogen or estrogen properties to our bodies, it's very difficult to find anything to take. I was recommended to take 800 IU's of vitamin E (200 in AM and 200 in PM). I must admit this hasn't helped. There's a patch that people use to lower blood pressure that is supposed to help but my blood pressure is already low and I'm a physical person so I was afraid to bottom out. There are 2 antidepressants that are being used. I mentioned them to the MD(1 is Paxil) and both the Surgeon and the GYN don't know too much about them but don't want to try them because I'm not depressed and there are side affects with them. I'm also exhausted but have accepted this is the way I'll be for awhile. I'm hoping with time things will slow down and eventually stop! Good luck! If you find out anything, let me know. HUGS!! Cathy0
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Thanks, Cathy. Guess I'll have to find a way to use those midnight hours to advantage. I, too, thought things would slow down, but when??? Time will tell. Good luck to you. Sandycruf said:Hi Sandy! Welcome! I,too, am on Tamoxifen. I've been on since Oct. 2000. I have hot flashes on and off all day and night. I'm 50. It's also put me into immed. menopause which I must admit, I don't mind too much. Because we don't want to add any more estrogen or estrogen properties to our bodies, it's very difficult to find anything to take. I was recommended to take 800 IU's of vitamin E (200 in AM and 200 in PM). I must admit this hasn't helped. There's a patch that people use to lower blood pressure that is supposed to help but my blood pressure is already low and I'm a physical person so I was afraid to bottom out. There are 2 antidepressants that are being used. I mentioned them to the MD(1 is Paxil) and both the Surgeon and the GYN don't know too much about them but don't want to try them because I'm not depressed and there are side affects with them. I'm also exhausted but have accepted this is the way I'll be for awhile. I'm hoping with time things will slow down and eventually stop! Good luck! If you find out anything, let me know. HUGS!! Cathy
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Hi
The chemo put me into menopause so I was 6 months into it by the time I started the Tamoxifen. I was taking 540mg of Black Cohosh which totally stopped the flashes ... but when I checked with my Oncologist he didn't want me to take it because of it's estrogenic properties. I stopped and I didn't get the flashes back. I don't know if the Black Cohosh did it or eventually the flashes stop. If it was the Cohosh .. I took it for a month ... if it just ran it's course it took me 10 months from my last period to get through it. If anyone is taking Black Cohosh and thier Oncologist has approved it I'd like to hear about it. I'd like to take it if it is safe because it also made me more flexible, more regular, and generally felt better. Back to the flashes ... the Oncologist suggested 400 mg Vitamin E and a "baby asprin" per day. Good luck. Jamie0 -
Sandy,
Hi, I have been on tamoxifen for 3 years now. The hot flashes were bad at first, but now I only get them occasionally and they are not as severe. I do take black cohosh at my oncologists suggestion. I am still pre-menopausal, so she says my body is producing estrogen all on its own and the little bit that the black cohosh might help it produce is nothing. However, before taking anything talk with your oncologist. Everyone has a different opinion, as herbal supplements are not regulated. If your doctor does approve, make sure the supplement is standarized. Many out there are not, and you do not know what you are getting and how much. In my case, the tamoxifen is working so well, my oncologist says I will be on it for life. I am stage IV and in remission and feeling great. My oncologist also had me taking melatonian to help with sleep. She knows I prefer a more natural approach to everything. It helped.
God Bless,
Kathy0 -
Kathy, thanks for your answer. I will ask my oncologist about black cohosh. I also take melatonin, and some nights it helps and some it doesn't. I guess I will have to "outgrow" the hot flashes. God bless. Sandyktinkey said:Sandy,
Hi, I have been on tamoxifen for 3 years now. The hot flashes were bad at first, but now I only get them occasionally and they are not as severe. I do take black cohosh at my oncologists suggestion. I am still pre-menopausal, so she says my body is producing estrogen all on its own and the little bit that the black cohosh might help it produce is nothing. However, before taking anything talk with your oncologist. Everyone has a different opinion, as herbal supplements are not regulated. If your doctor does approve, make sure the supplement is standarized. Many out there are not, and you do not know what you are getting and how much. In my case, the tamoxifen is working so well, my oncologist says I will be on it for life. I am stage IV and in remission and feeling great. My oncologist also had me taking melatonian to help with sleep. She knows I prefer a more natural approach to everything. It helped.
God Bless,
Kathy0 -
Jamie, ktinkey, who answered me March 11, ssaid her oncologist suggested she take black cohosh. I take vitamin E, but I am beginning to suspect that time is the answer for me. Thanks, and good luck. Sandyjmears said:Hi
The chemo put me into menopause so I was 6 months into it by the time I started the Tamoxifen. I was taking 540mg of Black Cohosh which totally stopped the flashes ... but when I checked with my Oncologist he didn't want me to take it because of it's estrogenic properties. I stopped and I didn't get the flashes back. I don't know if the Black Cohosh did it or eventually the flashes stop. If it was the Cohosh .. I took it for a month ... if it just ran it's course it took me 10 months from my last period to get through it. If anyone is taking Black Cohosh and thier Oncologist has approved it I'd like to hear about it. I'd like to take it if it is safe because it also made me more flexible, more regular, and generally felt better. Back to the flashes ... the Oncologist suggested 400 mg Vitamin E and a "baby asprin" per day. Good luck. Jamie0 -
Hi Sandy,
I have been on Tamoxifen for a little over a year now and am still having the hot flashes. I have tried several different things suggested by my oncologist but not alot of change. Right now I am taking vitamin E 800 IUS and I am taking black cohosh. This has helped with the night sweats at least but I do still have them alot during the day. I would be sure to check with you oncologist before taking anything as they know what is best for us to take.Hope you can get some help and get some sleep.Keep us posted and let us know if you get any new ideas from your Dr.
God Bless
Debbie0 -
Dear Debbie, I have heard a lot about black cohosh and plan to ask my oncologist about it. I am on vitamin E. My primary physician is a great believer in supplements and vitamins and I have to admit I feel better and have more energy with them. I also try to walk about 1 1/2 miles every day at lunch time. It seems to help. I am trying mental relaxation techniques to help with the sleep. We'll get through it! God bless you. Sandymaud said:Hi Sandy,
I have been on Tamoxifen for a little over a year now and am still having the hot flashes. I have tried several different things suggested by my oncologist but not alot of change. Right now I am taking vitamin E 800 IUS and I am taking black cohosh. This has helped with the night sweats at least but I do still have them alot during the day. I would be sure to check with you oncologist before taking anything as they know what is best for us to take.Hope you can get some help and get some sleep.Keep us posted and let us know if you get any new ideas from your Dr.
God Bless
Debbie0 -
Hi Sandy I was on Tamoxifin from Jan. 93 to Jan. 96. All I can say is that I was soppen wet all the time. It was one hot flash after another. My Dr. told me there was nothing that I could take for it. I was 46 when I went on it and after a while I thought it might have been from menapause. But about 4 days after stopping it I have never had another hot flash. Good Luck
Sylvia0 -
Whoa, Sylvia, you mean I can look forward to 5 more years of kicking off the covers, pulling on the covers, kicking off the covers --- well, it could be worse.lilmermaid said:Hi Sandy I was on Tamoxifin from Jan. 93 to Jan. 96. All I can say is that I was soppen wet all the time. It was one hot flash after another. My Dr. told me there was nothing that I could take for it. I was 46 when I went on it and after a while I thought it might have been from menapause. But about 4 days after stopping it I have never had another hot flash. Good Luck
Sylvia
Thanks for answering. Sandy0 -
Sandy:
I started Tamoxifen last July right after end of chemo and had the same problem. My Onco perscribed 20mg. of Megestrol (Megace) daily and it worked! Sometimes I will have sweats at night but nothing like I was experiencing at first. Mention it to your doctor and see what he/she says.
Love,
Mel in Arkansas0 -
Dear Mel, Thanks for the hint. I will ask Dr. B. Hope you continue to do well. Sandymelm said:Sandy:
I started Tamoxifen last July right after end of chemo and had the same problem. My Onco perscribed 20mg. of Megestrol (Megace) daily and it worked! Sometimes I will have sweats at night but nothing like I was experiencing at first. Mention it to your doctor and see what he/she says.
Love,
Mel in Arkansas0 -
Hi Sandy I felt itsure bet being on chemo.sbruney said:Whoa, Sylvia, you mean I can look forward to 5 more years of kicking off the covers, pulling on the covers, kicking off the covers --- well, it could be worse.
Thanks for answering. Sandy
Sylvia0 -
Tamoxifen - Wasn't Made For Me!
Hi Sandy!
I started taking Tamoxifen in September of 2010 following rt. breast cancer surgery and flap reconstruction. I totally know what you are talking about with your "hot flashes". I would wake up in the night just drenched! I would wake up 4-5 times a night and was so tired the next day. The other side affects upon that made me decide that it was a quality of life issue to stay on the drug and I was going to stop taking it. My Oncologist said maybe I needed a break and she took me off of Tamoxifen for 3 mo. this past spring. Oh, she also prescribed Effexor (anti-depressant) to help with the hot flashes/night sweats, but it did not help.
My recurrence testing results (4% chance of recurrence out of 100%) were the basis of my decision to go off of Tamoxifen. Was it really worth risking another type of physical ailment compared to the percentage of recurrence risk? The other side affects I experienced because I am hyper-sensitive to the drug were: bloating, constipation, couldn't concentrate, nerve sensitivity in and around the reconstructed area on my stomach, ovary pain, weight gain, and rt. leg calf pain and restless leg syndrome.
I recently saw my Oncologist and she encouraged me to try the drug again for a month just to see if the break would help my side affects. Well, as of Monday, I went been back on and I am getting all the symptoms back as my body adjusts again. The restless leg thing started last night! As of today, I've decided to not go back on it. The Oncologist gave me facts that state if I get a recurrence of cancer in another part of my body and because I was receptor positive, that it is typically an incurable type of cancer. I didn't know what to believe at that point. She said she wasn't trying to scare me, but.... It just isn't worth all the other health risks associated with taking Tamoxifen, in my opinion. I just can't function on it.
I believe there is other medication you can take to help with the hot flashes, but I had too many other side affects that it wasn't worth exploring for me personally. I hope you find a solution, Sandy!!0 -
old post from 2002T7 said:Tamoxifen - Wasn't Made For Me!
Hi Sandy!
I started taking Tamoxifen in September of 2010 following rt. breast cancer surgery and flap reconstruction. I totally know what you are talking about with your "hot flashes". I would wake up in the night just drenched! I would wake up 4-5 times a night and was so tired the next day. The other side affects upon that made me decide that it was a quality of life issue to stay on the drug and I was going to stop taking it. My Oncologist said maybe I needed a break and she took me off of Tamoxifen for 3 mo. this past spring. Oh, she also prescribed Effexor (anti-depressant) to help with the hot flashes/night sweats, but it did not help.
My recurrence testing results (4% chance of recurrence out of 100%) were the basis of my decision to go off of Tamoxifen. Was it really worth risking another type of physical ailment compared to the percentage of recurrence risk? The other side affects I experienced because I am hyper-sensitive to the drug were: bloating, constipation, couldn't concentrate, nerve sensitivity in and around the reconstructed area on my stomach, ovary pain, weight gain, and rt. leg calf pain and restless leg syndrome.
I recently saw my Oncologist and she encouraged me to try the drug again for a month just to see if the break would help my side affects. Well, as of Monday, I went been back on and I am getting all the symptoms back as my body adjusts again. The restless leg thing started last night! As of today, I've decided to not go back on it. The Oncologist gave me facts that state if I get a recurrence of cancer in another part of my body and because I was receptor positive, that it is typically an incurable type of cancer. I didn't know what to believe at that point. She said she wasn't trying to scare me, but.... It just isn't worth all the other health risks associated with taking Tamoxifen, in my opinion. I just can't function on it.
I believe there is other medication you can take to help with the hot flashes, but I had too many other side affects that it wasn't worth exploring for me personally. I hope you find a solution, Sandy!!
When these old posts are brought up I wonder how these people are doing. I was diagnosed in 2003.0 -
I am on TamoxfinMarcia527 said:old post from 2002
When these old posts are brought up I wonder how these people are doing. I was diagnosed in 2003.
I am on Tamoxfin since Dec 2009.No problems but a couple times I got real hot when the weather was hot and I over did it.Even after my total hysteroctomy I had no hot flashe but I was glad because I couldn;t take hormones because of a history of benign breast tumors and a family history of breast cancer.Still it didnt help me by staying off hormones I have breast cancer anyway.I can't imagine waking up all night with hot flashed.I wake up but usually go right back to sleep.I do feel exhausted though.
Cathy,
I also was told to take a anti depressant.My family doctor said Paxil.I read about it before taking it and the side effects and instructions said don't take paxil if you are on tamoxifin.I am glad I read that.I went to my oncologist and told her.She said NO don't take it.Take Effexor. She said go back to my family doctor and have her prescribe that.What the Paxil did was cause the tamoxfin to be ineffective from what my oncologist said.I was given Effexor BUT I see it is habit forming and I must be weaned.That terrifies me because I have a heart condition (fast heart) and afraid being weaned could cause it to go out of whack like what happened when I went off caffeine pop.Of course it wasn't doctor monitered but still it is a worry.
I think I read where someone has been on tamoxfin since 2000.Amazing.I thought after 5 years we go off it and start something else.I didn't know you stay on one the whole time.My friend took tamox for 5 years and something else for 5 years.She is a 16 year survivbor.
Lynn Smith0 -
Big GoofLynn Smith said:I am on Tamoxfin
I am on Tamoxfin since Dec 2009.No problems but a couple times I got real hot when the weather was hot and I over did it.Even after my total hysteroctomy I had no hot flashe but I was glad because I couldn;t take hormones because of a history of benign breast tumors and a family history of breast cancer.Still it didnt help me by staying off hormones I have breast cancer anyway.I can't imagine waking up all night with hot flashed.I wake up but usually go right back to sleep.I do feel exhausted though.
Cathy,
I also was told to take a anti depressant.My family doctor said Paxil.I read about it before taking it and the side effects and instructions said don't take paxil if you are on tamoxifin.I am glad I read that.I went to my oncologist and told her.She said NO don't take it.Take Effexor. She said go back to my family doctor and have her prescribe that.What the Paxil did was cause the tamoxfin to be ineffective from what my oncologist said.I was given Effexor BUT I see it is habit forming and I must be weaned.That terrifies me because I have a heart condition (fast heart) and afraid being weaned could cause it to go out of whack like what happened when I went off caffeine pop.Of course it wasn't doctor monitered but still it is a worry.
I think I read where someone has been on tamoxfin since 2000.Amazing.I thought after 5 years we go off it and start something else.I didn't know you stay on one the whole time.My friend took tamox for 5 years and something else for 5 years.She is a 16 year survivbor.
Lynn Smith
I just read the last post before mine.I see it is a old post.I was answering the post and a couple other things.I also wonder how these people are???Maybe they are doing good now and aren't posting.I hope so.
So that comment about taking tamox since 2000 is off.I am sure they didn't take it 11 years now.
I guess I need to look at dates first.
Lynn Smith0
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