Take Tamoxifen or Not? I am Torn! Please help : (

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  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #22
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    Lina128 said:

    Hi Chris
    I came to this site looking for answers as to wether I should start Tamoxifen or not. I should have started taking it a week ago, but for some reason I haven't been able to get myself to take it. I am concerned about the side effects. I finished 33 Rads treaments a couple of weeks ago and prior to that AC Chemo Treatment. I guess after a break from feeling lousy, I just don't want to give up feeling somewhat well again. After reading the replies here, I have realized that the benefits of Tamoxifen could very well outweigh the risks and I think I am going to "bite the bullet" and start taking it tomorrow morning...Good luck...

    my much trusted gyno
    said for sure to take..side effects out weigh risks for sure...I am temp. off all meds waiting to see what to do next...tamox only gave me mild side effects (started Aug 2008) until recently..(bleeding-they are trying to find out why and what to do)

    I will be taking something once oncologist , gyno and his consulation with gyno-oncologist...

    I HOPE you can come up with decision that you think if right...we are all so differnt..

    Denise
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #23
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    Lina128 said:

    Hi Chris
    I came to this site looking for answers as to wether I should start Tamoxifen or not. I should have started taking it a week ago, but for some reason I haven't been able to get myself to take it. I am concerned about the side effects. I finished 33 Rads treaments a couple of weeks ago and prior to that AC Chemo Treatment. I guess after a break from feeling lousy, I just don't want to give up feeling somewhat well again. After reading the replies here, I have realized that the benefits of Tamoxifen could very well outweigh the risks and I think I am going to "bite the bullet" and start taking it tomorrow morning...Good luck...

    my much trusted gyno
    said for sure to take..side effects out weigh risks for sure...I am temp. off all meds waiting to see what to do next...tamox only gave me mild side effects (started Aug 2008) until recently..(bleeding-they are trying to find out why and what to do)

    I will be taking something once oncologist , gyno and his consulation with gyno-oncologist...

    I HOPE you can come up with decision that you think if right...we are all so differnt..

    Denise
  • tnelson76
    tnelson76 Member Posts: 1
    #24
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    Lina128 said:

    Hi Chris
    I came to this site looking for answers as to wether I should start Tamoxifen or not. I should have started taking it a week ago, but for some reason I haven't been able to get myself to take it. I am concerned about the side effects. I finished 33 Rads treaments a couple of weeks ago and prior to that AC Chemo Treatment. I guess after a break from feeling lousy, I just don't want to give up feeling somewhat well again. After reading the replies here, I have realized that the benefits of Tamoxifen could very well outweigh the risks and I think I am going to "bite the bullet" and start taking it tomorrow morning...Good luck...

    Hi I am new to this.I had 6
    Hi I am new to this.I had 6 strong chemos over 18 weeks then 4 weeks radiotherapy 1 week booster radiotherapy which finished in December 2010 I started tamoxifen in dec and I have been fine a little weight gain which I managed to lose again no other side effects. You might not get any side effects but you wom't know until you try.Don't know if this helps at all.
  • chenheart
    chenheart Member Posts: 5,159
    #25
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    Hmmmmm...I was diagnosed in
    Hmmmmm...I was diagnosed in 2003~ had a lumpectomy ( 3 of 15 nodes positive) chemo and rads. I took Arimidex for 5 years, and about 18 months after stopping, I was diagnosed with a recurrance....liver mets,spine, lining of my lung, and a lymphnode on the other, previously unaffected side. As I had responded so well to the estrogen blocker for 5 years, my oncologist prescribed Tamoxifen...that was one year ago this week! CATscans find no evidence of the cancer on my liver, spine, node ( which was surgically removed in February) and I have some fluid on my lung lining which does NOT light up on the scan. So, for me, Tamoxifen is a literal life-saver! My ocologist says it will probably, eventually stop being effective, and I may need chemo agoan~ but I sooo cannot complain about being able to do all I do with no side effects for an entire year now. And Tamoxifen is the only medication I take.
  • jendrey
    jendrey Member Posts: 377
    #26
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    chenheart said:

    Hmmmmm...I was diagnosed in
    Hmmmmm...I was diagnosed in 2003~ had a lumpectomy ( 3 of 15 nodes positive) chemo and rads. I took Arimidex for 5 years, and about 18 months after stopping, I was diagnosed with a recurrance....liver mets,spine, lining of my lung, and a lymphnode on the other, previously unaffected side. As I had responded so well to the estrogen blocker for 5 years, my oncologist prescribed Tamoxifen...that was one year ago this week! CATscans find no evidence of the cancer on my liver, spine, node ( which was surgically removed in February) and I have some fluid on my lung lining which does NOT light up on the scan. So, for me, Tamoxifen is a literal life-saver! My ocologist says it will probably, eventually stop being effective, and I may need chemo agoan~ but I sooo cannot complain about being able to do all I do with no side effects for an entire year now. And Tamoxifen is the only medication I take.

    ...
    I elected not to take tamoxifen. I already have too many lingering side effects from the chemo drugs and at 50/50 odds I'll take my chances.

    In 1996, the State of California added tamoxifen to its list--Proposition 65--of known cancer causing chemicals. ( http://oehha.ca.gov/prop65/prop65_list/files/P65single091009.pdf )

    In my research I found that tamoxifen has a less evil cousin, Raloxifene; with 36% less uterine cancers and 29% less blood clots than tamoxifen. ( http://www.cancer.gov/newscenter/pressreleases/2006/starresultsapr172006 )

    You may want to ask your doctor about Raloxifene (marketed as Evista by Eli Lilly and Company).

    In the end only you can decide what's best for you.
  • Jennifer1961
    Jennifer1961 Member Posts: 137
    #27
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    Been on tamox since December
    Been on tamox since December and it's been okay. Most of the aches have gone, I take ibuprofin before bed. Tamox is a really good drug, it's been proven that the benefits far exceed the risks. Recurrance scares me more than any of the side effects, but that's just me. We all need to make our own decisions.
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #28
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    Jennifer1961 said:

    Been on tamox since December
    Been on tamox since December and it's been okay. Most of the aches have gone, I take ibuprofin before bed. Tamox is a really good drug, it's been proven that the benefits far exceed the risks. Recurrance scares me more than any of the side effects, but that's just me. We all need to make our own decisions.

    must have hysterctomy due to side effects of tamox
    BUT I may be odd man out...extreme...I dont' know..I have been on tamox just over 2 1/2 yrs when taken off...

    Denise
  • KathiM
    KathiM Member Posts: 8,028 Member
    #29
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    I'm in the final stretch....
    It will be 5 years, the 4th of July, since I started with Tamoxifen. I was er/pr positive, and even tho I had a total hyster for my rectal cancer, I chose this one based on the side effects of the other ones (AI's:Femara, Arymidex, etc). I wanted to do something to cut the risk of reoccurance, and this was the one my mom (also a breast cancer survivor) took with few side effects. She just recently passed, but it was from smoking, not cancer....

    It's wise to research all meds that you take, but, really, for me, this was the safest route. I no longer have my uterus, so the only other caution was blood clots. I see my docs regularly, and shout out when there is trouble. The AI's decrease bone density (I am osteoporotic from the chemo/rads), and can elevate cholesterol (mine is already naturally high).

    I am meeting with my onc to discuss any new findings. If there is none, I will stop with anything on the 4th....my own Independence Day!

    Hugs, Kathi
  • Lynn Smith
    Lynn Smith Member Posts: 1,264 Member
    #30
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    KathiM said:

    I'm in the final stretch....
    It will be 5 years, the 4th of July, since I started with Tamoxifen. I was er/pr positive, and even tho I had a total hyster for my rectal cancer, I chose this one based on the side effects of the other ones (AI's:Femara, Arymidex, etc). I wanted to do something to cut the risk of reoccurance, and this was the one my mom (also a breast cancer survivor) took with few side effects. She just recently passed, but it was from smoking, not cancer....

    It's wise to research all meds that you take, but, really, for me, this was the safest route. I no longer have my uterus, so the only other caution was blood clots. I see my docs regularly, and shout out when there is trouble. The AI's decrease bone density (I am osteoporotic from the chemo/rads), and can elevate cholesterol (mine is already naturally high).

    I am meeting with my onc to discuss any new findings. If there is none, I will stop with anything on the 4th....my own Independence Day!

    Hugs, Kathi

    Continue
    Continue to take it.I was like you.Had fears.I have some thinning of hair.Lately I've been tired but alot going on.I am a person who never sits still unless I am on the computer.I have some hot flashes which puzzles me because when I had my hysterecomy I didn't have them and was never put on hormones but Now I have hot flashes.Only seldom though. I think blood clots worried me the most because I have bad varicose veins.I am a small person but on my feet alot.So far no problem with clots.

    I am like you.The side effects worried me.I've been taking tamox for 17 months. I pondered about taking it for 6 weeks when given the prescript .Then I saw my breast surgeon.He said you have a non invasive cancer, it was caught early and won't come back BUT you can get other types of cancer.Then I started taking it. He was serious and blunt.Now I wish I would have taken it the very day it was prescribed.

    Tamox worked for my friend who is a 16 year survivor with Stage 3 breast cancer.She is doing fine. She also took another pill for 5 years and now wishes there was a 3rd pill.She started out like me though.Afraid to take it.

    Lynn Smith
  • ShondaS
    ShondaS Member Posts: 6
    #31
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    Struggling with this decision!
    I am 32 with no kids and also have a history of blood clots. When I think I have made the decision to not take the medicine, I start doubting and reconsider. I feel like I need to pray some more so I can at least be at peace with my decision. In fact I just posed about this same issue.

    Good luck with your decision.
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #32
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    ShondaS said:

    Struggling with this decision!
    I am 32 with no kids and also have a history of blood clots. When I think I have made the decision to not take the medicine, I start doubting and reconsider. I feel like I need to pray some more so I can at least be at peace with my decision. In fact I just posed about this same issue.

    Good luck with your decision.

    I hope you can come up with
    I hope you can come up with decision you are comfortable with..

    Denise

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