anyone taken OFF Tamoxifen?

disneyfan2008
disneyfan2008 Member Posts: 6,583 Member
in Breast Cancer #1
I was taken off of it today..(tamox) after about 20mths. Curious if this has happened to anyone else>?

I am going with NO meds for month..then blood work...then back to office to script for new med!

Denise

Comments

  • Bella Luna
    Bella Luna Member Posts: 1,578 Member
    #2
    If you don't mind me
    If you don't mind me asking... Why did they take you off the Tamoxifen? I am on Tamoxifen. I have been on since March 2010.
    BL
  • Marcia527
    Marcia527 Member Posts: 2,729
    #3
    I was switched to Aromasin
    I was switched to Aromasin but it was only as a precaution because I had family history of uterine cancer and I had started spotting. The onc didn't know if Tamoxifen had anything to do with it. I had been on Tamoxifen for 9 months.
  • seof
    seof Member Posts: 819 Member
    #4
    it happens
    I don't remember if I have heard of your specific case before, but I have heard of several situations where Dr's have changed treatments for a variety of reasons. Your Dr. is the best source of information about your case. You might look on chemocare.com if you want to know specific uses/side effects of specific drugs.

    Hope it helps, seof
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #5
    Bella Luna said:

    If you don't mind me
    If you don't mind me asking... Why did they take you off the Tamoxifen? I am on Tamoxifen. I have been on since March 2010.
    BL

    don't mind telling..i just didnt' want to put TMI
    within one year I had thickening of uterus...and then again 6mths later more. After 4+ years of no period at all...I bleed for about 2 days. .....I have had two internal ultrasounds followed by D & Cs then after bleeding I had some precedure done in the dr office...more biopsies of some sort!

    surgery April 3 2008, radiation completed June 28, 08 and tamoxifen Aug 2008 until today I was told to stop it.
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #6
    seof said:

    it happens
    I don't remember if I have heard of your specific case before, but I have heard of several situations where Dr's have changed treatments for a variety of reasons. Your Dr. is the best source of information about your case. You might look on chemocare.com if you want to know specific uses/side effects of specific drugs.

    Hope it helps, seof

    thanks for info
    I'll check it out
  • Lynn Smith
    Lynn Smith Member Posts: 1,264 Member
    #7
    disneyfan2008 said:

    thanks for info
    I'll check it out

    My friend
    My friend was on tamoxifin for 5 years and another med for 5 years.Just this past year she's had spotting. They've done all the tests and found nothing.She contributes it to tamoxifin.

    I also take tamoxifin but had a total hysterecomy.No worries for me but I had blood in my urine which turned out to be kidney stones. I was so upset with the trace of blood but my urologist said some women can have bleeding and a cause is never found. My cause for bleeding was found.

    People with family histories of uterine cancer and bleeding problems should go off tamoxifin.

    I've had people tell me they go off tamoxifin on their own for different reasons.One lady said if she didn't her marriage would have failed.Some get bad side effects and do strange things and can have other problems too.If I decided to go off tamoxifin I would talk to my doctor first but I feel it is a precaution for me at this time.Only been on it 15 months.

    Lynn Smith
  • ManWithaMission
    ManWithaMission Member Posts: 497
    #8
    Taken off Tamoxifen!
    I was taken off Tamoxifen by my Oncologist in January of this year and put on Femera. I had been on Tamoxifen since November of 2007 after my Mascetomy. My biggest problem was with hot flashes. I don't know if this will help you or not,being from a mans point of view.

    Hugs, Robert
  • Marcia527
    Marcia527 Member Posts: 2,729
    #9
    ManWithaMission said:

    Taken off Tamoxifen!
    I was taken off Tamoxifen by my Oncologist in January of this year and put on Femera. I had been on Tamoxifen since November of 2007 after my Mascetomy. My biggest problem was with hot flashes. I don't know if this will help you or not,being from a mans point of view.

    Hugs, Robert

    Hi Robert! Been a long time.
    Hi Robert! Been a long time. Nice to see you posting again!
  • mjjones453
    mjjones453 Member Posts: 155
    #10
    Marcia527 said:

    Hi Robert! Been a long time.
    Hi Robert! Been a long time. Nice to see you posting again!

    taken off tamoxifen
    I have been taken off of tamoxifen for a month to see if some abdominal issues I have will subside. So far so good! I have been off of it since 3/8/11. I have been on it for about 10 months. Symptoms: not so nice bone pain, hot flashes, tiredness, dizziness -anyone experience this??? and then the abdominal pain. Tests don't reveal anything but fairly large cysts on my ovaries. I am still premenopausal, but 50 years old, so they are not so quick to do a hysterectomy. Do you know what other med they could put me on to replace tamoxifen? Mary
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #11
    mjjones453 said:

    taken off tamoxifen
    I have been taken off of tamoxifen for a month to see if some abdominal issues I have will subside. So far so good! I have been off of it since 3/8/11. I have been on it for about 10 months. Symptoms: not so nice bone pain, hot flashes, tiredness, dizziness -anyone experience this??? and then the abdominal pain. Tests don't reveal anything but fairly large cysts on my ovaries. I am still premenopausal, but 50 years old, so they are not so quick to do a hysterectomy. Do you know what other med they could put me on to replace tamoxifen? Mary

    @mary
    I was just taken off tamox after about 20mths...now i'll wait one month then blood work..back to dr for new script...new med...she told me name of what she will put me on but dont' remember..she did say NOT approve for BC or not proven..but many use. I must be in total menopause to take it..I thought I had been for over 4 yrs but bleeing about 2 mths ago..so could be side effect of tamox..or something..time will tell after blood work in few weeks..
  • jo jo
    jo jo Member Posts: 1,175 Member
    #12
    disneyfan2008 said:

    @mary
    I was just taken off tamox after about 20mths...now i'll wait one month then blood work..back to dr for new script...new med...she told me name of what she will put me on but dont' remember..she did say NOT approve for BC or not proven..but many use. I must be in total menopause to take it..I thought I had been for over 4 yrs but bleeing about 2 mths ago..so could be side effect of tamox..or something..time will tell after blood work in few weeks..

    Hey Denise i was taken off
    Hey Denise i was taken off tamoxifen about a month ago cause they finally relized i was allergic to it...i go back in again i think next week so they can put me on something else but it was great not having to take any pills for awhile!!!!
    Sorry your having thoughs issues with it. I hope they get everything under order soon.
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #13
    jo jo said:

    Hey Denise i was taken off
    Hey Denise i was taken off tamoxifen about a month ago cause they finally relized i was allergic to it...i go back in again i think next week so they can put me on something else but it was great not having to take any pills for awhile!!!!
    Sorry your having thoughs issues with it. I hope they get everything under order soon.

    month from now I should know new med
    as of now due to ulcertive colitis and BC i take a total of: 20 pills daily...now down to 19....so give or take one or two...doens't much matter hehe...
  • NJMom10
    NJMom10 Member Posts: 176
    #14
    disneyfan2008 said:

    month from now I should know new med
    as of now due to ulcertive colitis and BC i take a total of: 20 pills daily...now down to 19....so give or take one or two...doens't much matter hehe...

    Tamoxifen is for pre menopause I was told
    I was told the Tamoxifen is prescribed for perimenopause and premenopause women. When you are in full menopause you can take Arimidex, Femara or another drug whose name escapes me. The last 3 drugs have fewer side effects. Ask your onc about those and see what he/she says. If you haven't had a period in 4 years, you are post menopause and should be able to take one of those drugs. My onc is going to switch me to them when I am fully menopausal which hopefully will be next November if I don't get a period by then. Hope this helps.
  • NJMom10
    NJMom10 Member Posts: 176
    #15
    disneyfan2008 said:

    month from now I should know new med
    as of now due to ulcertive colitis and BC i take a total of: 20 pills daily...now down to 19....so give or take one or two...doens't much matter hehe...

    Tamoxifen is for pre menopause I was told
    I was told the Tamoxifen is prescribed for perimenopause and premenopause women. When you are in full menopause you can take Arimidex, Femara or another drug whose name escapes me. The last 3 drugs have fewer side effects. Ask your onc about those and see what he/she says. If you haven't had a period in 4 years, you are post menopause and should be able to take one of those drugs. My onc is going to switch me to them when I am fully menopausal which hopefully will be next November if I don't get a period by then. Hope this helps.
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #16
    NJMom10 said:

    Tamoxifen is for pre menopause I was told
    I was told the Tamoxifen is prescribed for perimenopause and premenopause women. When you are in full menopause you can take Arimidex, Femara or another drug whose name escapes me. The last 3 drugs have fewer side effects. Ask your onc about those and see what he/she says. If you haven't had a period in 4 years, you are post menopause and should be able to take one of those drugs. My onc is going to switch me to them when I am fully menopausal which hopefully will be next November if I don't get a period by then. Hope this helps.

    thanks for info
    This why I am off for full month then blood work to see if completely through menopause..I thought I was...appearently not...or bleeding for those 2 days side effect...I"LL find out in month...then to new med to try...

    thanks for info...
  • EveningStar2
    EveningStar2 Member Posts: 491 Member
    #17
    I was
    taken off but for entirely different reasons. I had a pulmonary embolism shower after 5 months on tamoxifen and the docs thought that the blood clots were caused by the tamoxifen which is known to cause blood clots. The hospital doctors asked if I would mind stopping it and I said "stop the drug that tried to kill me? Yes, I think I can do that" ;-) saw the oncologist later and she agreed! No problems in the 16 months since. Except that I'm on oxygen at night and that's not a problem, just a nuisance.

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