Anyone stopped taking post cancer med ? and not start different one?

disneyfan2008
disneyfan2008 Member Posts: 6,583 Member
in Breast Cancer #1
taken off tamox...and wondering if really worth all side effects again trying another med? any thoughts or personal experience?


I know NO Right or wrong answer...just wondering..

Denise
«1

Comments

  • KathiM
    KathiM Member Posts: 8,028 Member
    #2
    I'm scheduling an appointment with my onc....
    It's a bit different situation for me....I've taken Tamoxifen for 5 years, come the end of June. Research shows that I need to come off of it.

    As far as our last conversation, my onc and I decided no more. The AI's improve my chances of no cancer by 1%. But, the main side effects....bone thinning and higher cholesterol (both of which I already have...sigh) are not good. So, I'm planning, after hearing if there is any new research, to start flying without a net...no more drugs...

    BUT, I must also say, I had a total hysterectomy, and I am 55 years young. So the amount of estrogen in my system anyway (the thing these drugs combat to prevent ER/PR positive breast cancer, which I had) is very low...and I watch how much soy I eat (natural source of estrogen...some bad) and manage my remaining hot flashes with ice...lol...not natural estrogen products like black cohosh...

    Listen to your onc...that's what I am doing!

    Hugs, Kathi
  • Marcia527
    Marcia527 Member Posts: 2,729
    #3
    Everyone is different. I had
    Everyone is different. I had reasons I stopped meds three years ago. I was diagnosed in 2003. But even when I was on meds the onc said it was just benefiting me slightly.
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #4
    Marcia527 said:

    Everyone is different. I had
    Everyone is different. I had reasons I stopped meds three years ago. I was diagnosed in 2003. But even when I was on meds the onc said it was just benefiting me slightly.

    such a hard call
    and what ever planning on giving me (since taken off tamox) has NO proven benefit! So wondering if worth taking!
  • Lighthouse_7
    Lighthouse_7 Member Posts: 1,566 Member
    #5
    disneyfan2008 said:

    such a hard call
    and what ever planning on giving me (since taken off tamox) has NO proven benefit! So wondering if worth taking!

    My personal decision is that
    My personal decision is that I'm not on any meds either. I tried all 3 AI's.
  • mwallace1325
    mwallace1325 Member Posts: 806
    #6
    I tried two
    I tried both femera and anastrozole and the side effects were AWFUL. I stopped and as of now have no plan to try another.

    marge
  • Miss Murphy
    Miss Murphy Member Posts: 302
    #7
    mwallace1325 said:

    I tried two
    I tried both femera and anastrozole and the side effects were AWFUL. I stopped and as of now have no plan to try another.

    marge

    Nice to Know
    I tried two different AI drugs and had awful side effects so after 1 1/2 years, I went on tamoxifen. That drug is only slightly better. I swear some days I feel like I'm being poisoned to death. I have just under 2 years to go to reach 5 years total - believe me there are many (most) days when I feel like stopping all together. I keep telling myself - one day at a time and I'll get to the end of the tunnel. I so understand decisions to stop taking the drugs and I'm envious of the gals who have no side effects.

    Hugs, Sally
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #8
    Miss Murphy said:

    Nice to Know
    I tried two different AI drugs and had awful side effects so after 1 1/2 years, I went on tamoxifen. That drug is only slightly better. I swear some days I feel like I'm being poisoned to death. I have just under 2 years to go to reach 5 years total - believe me there are many (most) days when I feel like stopping all together. I keep telling myself - one day at a time and I'll get to the end of the tunnel. I so understand decisions to stop taking the drugs and I'm envious of the gals who have no side effects.

    Hugs, Sally

    thanks for replies
    so my understanding from reading...if i reading it correctly...tamox has the least side effects yah think?

    I am going on 3rd week with nothing...and soon being put ON SOMETHING...and unsure if i want to start anything! Sunday was 3 yrs since surgery and just over 2 1/2 yrs tamox..


    grrrrrrrrrrrrrrrrrrrrrrrrrr

    Denise
  • roseann4
    roseann4 Member Posts: 992 Member
    #9
    disneyfan2008 said:

    thanks for replies
    so my understanding from reading...if i reading it correctly...tamox has the least side effects yah think?

    I am going on 3rd week with nothing...and soon being put ON SOMETHING...and unsure if i want to start anything! Sunday was 3 yrs since surgery and just over 2 1/2 yrs tamox..


    grrrrrrrrrrrrrrrrrrrrrrrrrr

    Denise

    I've been on Arimidex for 2 years.
    I have no obvious side effects. Guess I'm fortunate. My cancer is estrogen receptive so my dr thinks it will make a difference for me. Who knows?

    Roseann
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #10
    roseann4 said:

    I've been on Arimidex for 2 years.
    I have no obvious side effects. Guess I'm fortunate. My cancer is estrogen receptive so my dr thinks it will make a difference for me. Who knows?

    Roseann

    was on tamox for over 2yrs thought so real side effects
    until recently-found out thickening of uterus and now bleeding-going to see gyno tomorrow again..and then both rad. oncologist and reg oncologist! Between the 3 I hope we can figure something out...what to take or not take or do...

    other then above very mild hot flashes, bad leg cramps at night and can't sleep

    Denise
  • phoenixrising
    phoenixrising Member Posts: 1,508
    #11
    I've been on Tamoxifen,
    I've been on Tamoxifen, Arimidex and now Aromasin, all with terrible SE. It's been a real challenge staying on them and I do take breaks when it becomes completely unmanageable but I really don't want to do chemo again and that keeps me taking that little white pill every morning.
  • gagee
    gagee Member Posts: 332
    #12
    I came off the arimidex soon
    I came off the arimidex soon after I started taking it. I had to many side effects. Talked about starting some thing new but onc. thinks I won't have to do any drugs. I hope that is the right way to go. Have to trust her.

    Diana
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #13
    gagee said:

    I came off the arimidex soon
    I came off the arimidex soon after I started taking it. I had to many side effects. Talked about starting some thing new but onc. thinks I won't have to do any drugs. I hope that is the right way to go. Have to trust her.

    Diana

    at this point I am thinking
    NO more meds...
  • ElizabethB
    ElizabethB Member Posts: 89
    #14
    roseann4 said:

    I've been on Arimidex for 2 years.
    I have no obvious side effects. Guess I'm fortunate. My cancer is estrogen receptive so my dr thinks it will make a difference for me. Who knows?

    Roseann

    same here
    mine is estrogin receptor after my chemo and rad I will be taking Arimidex for 5 years and secnce I had a her-2 I will be getting iv herceptin for a year seems like a long time but if it helps I am sure it is worth it . I don't know what the side effects are for Herceptin maybe someone out there knows?????
  • Annette 11
    Annette 11 Member Posts: 380
    #15
    I am TN so the med's won't
    I am TN so the med's won't benefit me but I do take Bayer low-dose asprin ever other night.
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #16
    Annette 11 said:

    I am TN so the med's won't
    I am TN so the med's won't benefit me but I do take Bayer low-dose asprin ever other night.

    TN??????????

    TN??????????
  • joannstar
    joannstar Member Posts: 403 Member
    #17
    disneyfan2008 said:

    TN??????????

    TN??????????

    That means
    Triple Negative (TN or TNBC) so no hormone based meds are given.

    JoAnn
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #18
    joannstar said:

    That means
    Triple Negative (TN or TNBC) so no hormone based meds are given.

    JoAnn

    Thanks for explaination
    I just got call from my gyno in ref: of my once again biospies (due to bleeding most likely side effect of tamox) I have been taken off tamox now and my gyno suggests I take what ever the new med is and try it out...pro certainly outweigh the cons..I really trust him...for over 20 yrs...

    Denise..
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #19
    joannstar said:

    That means
    Triple Negative (TN or TNBC) so no hormone based meds are given.

    JoAnn

    Thanks for explaination
    I just got call from my gyno in ref: of my once again biospies (due to bleeding most likely side effect of tamox) I have been taken off tamox now and my gyno suggests I take what ever the new med is and try it out...pro certainly outweigh the cons..I really trust him...for over 20 yrs...

    Denise..
  • Ritzy
    Ritzy Member Posts: 4,381 Member
    #20
    disneyfan2008 said:

    such a hard call
    and what ever planning on giving me (since taken off tamox) has NO proven benefit! So wondering if worth taking!

    I decided against taking
    I decided against taking tamox, as, I was too worried of the side effects. I don't know it my decision was right or wrong. But, it was my choice.


    Sue :)
  • pbrndm5
    pbrndm5 Member Posts: 83
    #21
    disneyfan2008 said:

    Thanks for explaination
    I just got call from my gyno in ref: of my once again biospies (due to bleeding most likely side effect of tamox) I have been taken off tamox now and my gyno suggests I take what ever the new med is and try it out...pro certainly outweigh the cons..I really trust him...for over 20 yrs...

    Denise..

    I am not on meds
    I was diagnosed with IDC in November 2010. Had a lumpectomy in January and had balloon radiation in January(5days of treatment 2x a day) Oncologist and I have decided no meds since tumor was so small and no node involved. Had Onco test (done 3x with 3 different results),Oncologist doesn't think the benefits of chemo etc, outweigh the risks. Not sure if right choice, but I feel good and am being checked by oncologist every 3 mos and of course mammy every 6.

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