STOPPING TAMOXIFEN

corey50
corey50 Member Posts: 111
edited March 2014 in Breast Cancer #1
hi everyone,
i would like some advice or experiences.
june was 5 years from my cancer surgery. yeah!! stage 1, lumpectomy, chemo and rads. the end of oct. will be 5 years from end of treatment. this month, sept., is 5 years that i've been taking tamoxifen. my tumor was 90% hormone positive and i was pre menopausal at the time. yesterday was my appt. with my onco he says that i can stop taking tamoxifen and he doesn't recommend taking anything else. he said there is a drug, femara, but it has some nasty side effects and he doesn't think i need it. i have my appt. with my surgeon in a couple of months and will ask his opinion. has anyone else just stopped taking tamoxifen after 5 years and not taken anything else? i would appreciate any thoughts.
thank you and wishing us all continued good health and God's blessings.

Comments

  • wendybia
    wendybia Member Posts: 73
    #2
    can't help with tamoxifen
    but I do take femara...I'm or was premenopause but onc believes femara to be so much better than tamoxifen she has put me in menopause so I can take it. My cancer is estrogen positive er/pr +...her -...I deal with the side effects, they aren't so bad that I want to stop especially if the results are no more cancer, I only want to travel this road once if I can help it. Wendy
  • mwallace1325
    mwallace1325 Member Posts: 806
    #3
    Femera
    Can't help with the tamixofen, but I stopped the femera on my own after 8 months because of the side effects I was experiencing with it. There have been many here though who've done well with femera, I just wasn't one of them. I know my onc is going to be upset with me, but it really got to be a "quality of life" thing. I feel soooo much better since I stopped it and am getting it out of my system. I realize some day I may have to look back and wonder about this decision, but for now I know it's the right one for me. Good luck, whatever your decision.

    marge
  • missrenee
    missrenee Member Posts: 2,136 Member
    #4
    mwallace1325 said:

    Femera
    Can't help with the tamixofen, but I stopped the femera on my own after 8 months because of the side effects I was experiencing with it. There have been many here though who've done well with femera, I just wasn't one of them. I know my onc is going to be upset with me, but it really got to be a "quality of life" thing. I feel soooo much better since I stopped it and am getting it out of my system. I realize some day I may have to look back and wonder about this decision, but for now I know it's the right one for me. Good luck, whatever your decision.

    marge

    Oh, if only we had a crystal ball
    Before my diagnosis last November, I was so anti-pharmaceuticals or any kind. I took meds so sparingly--I even debated about taking a simple aspirin.

    What a leap of faith this whole experience has been! But, I'm relying on my team of experts. Since I'm post-menopausal and ER and PR+, HER2-, I'm on Arimidex (an alternative to Femara). I've been on it about 2 months now and am doing well so far. If I develop problems, I'll have a talk with my team and go from there.

    Good luck to you and as everyone has said, we're all different and what works for me might not work for you and you may have a totally different experience than anyone else. If you trust your team, have faith in their recommendations.

    Hugs, Renee
  • Marcia527
    Marcia527 Member Posts: 2,729
    #5
    We are each different. But
    We are each different. But here is my story. I was pre-menopausal also. I took Tamoxifen for 9 months and had spotting problems. The onc took a blood test to make sure I was in menopause. The chemo had pushed me in. So he sent me to a GYN who ran tests. It was polyps in the uterus. But because of family history he switched me to Aromasin. I took this for 2 1/2 years. So I was on medication 3 years and 3 months. I discontinued it about 2 1/2 years ago for various reasons.
  • Rague
    Rague Member Posts: 3,653 Member
    #6
    I haven't had Tamoxifen but
    I haven't had Tamoxifen but have been on Femara for 7 months now and have had no side effects from it.

    Susan
  • sal314
    sal314 Member Posts: 599 Member
    #7
    Congrats on Almost Finishing!
    I finished my 5-years on Aug. 31st. Went to see my onc. last week. Asked him if there is anything else I could be on now or in the future. (I'm still pre-menopausal) He said there is a drug (but I don't think he said the name) that they give people 5 to 10 years out from their original diagnoses, but since I'm 9 years out (next Wed!:)) I don't really fit the profile. Awww, he told me I was a "special case"! LOL.

    Anyway...he said once I turn postmenapausal we'd "talk". He also said who knows what new stuff will be coming along in the future. So...for the time being he said there really isn't anything I can be on. And I'm really OK with that! LOL.

    Of course, if some new, great thing comes along in the future, and I "fit the profile" I'm open to looking into it.

    Not sure this helps much, but this is my experience! All I can say is since being off of Tamoxifen for only 9 days, I'm already feeling better! The fog is liftening and my spirit is lighting up! Amen:)

    Sally
  • greyhoundluvr
    greyhoundluvr Member Posts: 402
    #8
    As Sally Said -
    I think a lot of it has to do with whether you are pre or post-menopausal. We know that all of the doctors look at these things differently but the way mine explained it, the Tamoxifen is used if you are pre-menopausal. Because it is one of the older drugs, it has been studied the most and he said it has been shown to not be very effective after 5 years. After menopause, he said they use other drugs like the Femara and the Arimidex. Since there aren't as many long term studies with these newer drugs, he said I should plan to stay on them forever. I have been on the Arimidex about a month and really haven't had any problems (knock on wood)....I do get aching, especially when I first stand up but I was getting that from the chemo (I made a point of starting the drug before all my chemo symptoms went away because I didn't want to be able to blame it for every complaint I had). So far, it has been very tolerable and I am happy to have another weapon in the anti-cancer arsenal.
  • cahjah75
    cahjah75 Member Posts: 2,631
    #9
    Post treatment
    is a discussion that my oncologist and I will have when I finish chemo. I am postmenopause but I have osteoarthritis and I was ER/PR+ and HER2-. However, in my new pic the sister 2nd from right had DCIS 9 years ago with lumpectomy, rads & 5 years Tamoxifen. The sister 2nd from left had lumpectomy, lymph nodes, chemo, rads, Arimidex for 5 years 8 years ago. Neither of them took anything else afterwards. Both went into menopause. So, it really depends on what your oncologist thinks is the best post treatment for you. I would celebrate that you're done with Tamoxifen!
    Char
  • corey50
    corey50 Member Posts: 111
    #10
    cahjah75 said:

    Post treatment
    is a discussion that my oncologist and I will have when I finish chemo. I am postmenopause but I have osteoarthritis and I was ER/PR+ and HER2-. However, in my new pic the sister 2nd from right had DCIS 9 years ago with lumpectomy, rads & 5 years Tamoxifen. The sister 2nd from left had lumpectomy, lymph nodes, chemo, rads, Arimidex for 5 years 8 years ago. Neither of them took anything else afterwards. Both went into menopause. So, it really depends on what your oncologist thinks is the best post treatment for you. I would celebrate that you're done with Tamoxifen!
    Char

    A LITTLE BACKGROUND
    thank you everyone for your replies. as you all said we are all different and have different experiences with treatment.
    a little background on me: i was 47yrs old and still getting my period regularly when i was diagnosed. the month i finished chemo was the last time i had a period. because my tumor was er/pr+ and her- and i was not at that time menopausal the onco put me on tamoxifen, 5 years ago this month. 4 months after i finished chemo my ob/gyn ran a blood test to check my hormone levels and i was post menopausal, but my onco said i should not switch from tamoxifen because of my age and that i wasn't in menopause when this all started. every year we would revisit this decision, along with me getting a 2nd opinion from my surgeon, and both thought i should continue on the tamoxifen. now after 5 years my onco says i can stop. mixed feelings to be sure: so happy to soon know what my body and mind feel like with no drugs and side effects, but also a little scared about stopping something thats supposedly been helping to lower my risk of a recurrence. with the tamoxifen i was able to tolerate the side effects ,more so as time went by: fatigue,mood swings, hot flashes, some swelling, discharge, the constant worry about uterine problems and blood clots and i am not i admit in a hurry to go on another drug with a whole new set of side effects. i have not done any research on femara myself yet since my dr. appt. was only yesterday and i still have a week left on the tamoxifen, but i plan to and i will discuss with my surgeon in nov. i trust my onco and feel that he knows me so for the time being i will finish my tamoxifen and take it one day at a time, praying to GOD that with chemo,rads, tamoxifen and of course HIS grace, i've done enough to kill this beast for good.
    thank you again for your thoughts and God Bless.
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #11
    I had Stage 3A twenty-three
    I had Stage 3A twenty-three yrs ago. I was on tamoxifen for 7 yrs because there was no protocol about when to stop back then. After 7 years, the oncologist said to stop because the risk of serious adverse effects goes up. I did not have any treatment at all from 1994 until 2009 and then I had a recurrence. But you have Stage 1, so I think most docs would think the tamoxifen was enough. But as soemone else said, if we only had a crystal ball!
  • sea60
    sea60 Member Posts: 2,613
    #12
    CypressCynthia said:

    I had Stage 3A twenty-three
    I had Stage 3A twenty-three yrs ago. I was on tamoxifen for 7 yrs because there was no protocol about when to stop back then. After 7 years, the oncologist said to stop because the risk of serious adverse effects goes up. I did not have any treatment at all from 1994 until 2009 and then I had a recurrence. But you have Stage 1, so I think most docs would think the tamoxifen was enough. But as soemone else said, if we only had a crystal ball!

    Good question
    I'm on Tamoxifen and will complete 5 years in Feb of 2011. I'm like you, I'm not sure what my Oncologist will recommend. She said we'd discuss it at my next appointment. I'm also just praying that this thing is gone for good! Keeping the faith.

    Blessings,

    Sylvia

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