Has anyone oppted to not take the inhibitors and not had a re-occurance.

janie560
janie560 Member Posts: 42
in Breast Cancer #1
I have been told i will need to take amoratase inhibitors. I am post menapause 64 years old. I had a small growth removed from my left breast at 1.1cm, margin and nodes were clear. I am currently not over weight i lost weight prior to diagnosis.

The inhibitor side effects are so scary i would rather not take them. Have any of u not taken then with no re-occurance?
Thank u for your help. Janie

Comments

  • cathyp
    cathyp Member Posts: 376 Member
    #2
    Hi Janie,
    I had a double
    Hi Janie,

    I had a double mastectomy for stage 1 cancer, no nodes involved. Complicating my treatment options was the fact I was heavy radiated for Hodgkins Disease (which caused my breast cancer). Couldn't repeat radiation and no chemo. I started Tamoxifen for 2 mos but had gyno issues and a TIA so stopped it. It has been 3 years and 9 mos since my BC dx.

    Good Luck w/your decision,
    Cathy
  • SIROD
    SIROD Member Posts: 2,194 Member
    #3
    You can try and if it's not working for you, stop!
    Dear Janie,

    Until you take a drug, you don't know what the side effects will be. The drug companies have to list all the side effects in order to protect themselves. Not everyone has bad side effects and certainly not all that are listed.

    What the doctor suggest is for you to buy protection on having the cancer not return. If you are not comfortable using Aromatase Inhibitors, how about Tamoxifen? It is an older drug used by women for many, many years with success.

    I would give it a try. If you find that you can't live with the side effects, you can always stop. I had an aunt who was 80 used Tamoxifen and she is still alive at 94 and cancer free.

    Best wishes,

    Doris
  • Rague
    Rague Member Posts: 3,653 Member
    #4
    We're each unique!
    There is no way that I would have opted out of AI. I've been on Femara for over 1 1/2 yrs now and have no SE's. I'm 65 and was 18 yrs post menopause when DX'd in Aug. '09. I have a different DX that you do - I'm IBC (Inflammatory Breast Cancer) which is VERY aggressive with node (17 positive) involvement. IF Femara had been a problem for me then Dr said we'd try others as there are several. Personally I couldn't have looked Hubby, Son or G-daughter in the face if I hadn't done everything I could and had a reoccurance.

    We are each unique and no 2 have exactly the same reaction to any TX's. Ask all the questions you have and get the most info you can but don't expect to have every thing yourself.

    Susan
  • jendrey
    jendrey Member Posts: 377
    #5
    SIROD said:

    You can try and if it's not working for you, stop!
    Dear Janie,

    Until you take a drug, you don't know what the side effects will be. The drug companies have to list all the side effects in order to protect themselves. Not everyone has bad side effects and certainly not all that are listed.

    What the doctor suggest is for you to buy protection on having the cancer not return. If you are not comfortable using Aromatase Inhibitors, how about Tamoxifen? It is an older drug used by women for many, many years with success.

    I would give it a try. If you find that you can't live with the side effects, you can always stop. I had an aunt who was 80 used Tamoxifen and she is still alive at 94 and cancer free.

    Best wishes,

    Doris

    ...
    I refused to take tamoxifen and any aromatase inhibitors both. I never even bothered to consider giving them a chance. I already have so many lingering side effects from everything else that I'm just not about to add even one more thing. I researched the benefits verses the trade-offs and it's just not worth it to me.

    But, that's just me.

    You might consider the options Doris has suggested. I'd add that instead of tamoxifen consider tamoxifen's less evil cousin, raloxifene. See results of the STAR trial here:

    http://www.google.com/url?sa=t&source=web&cd=2&ved=0CCMQFjAB&url=http://www.cancer.gov/newscenter/pressreleases/2006/starresultsapr172006&ei=JqWHTsyKJMrKiAKSxJ3WDA&usg=AFQjCNGzxYyiPcZhR1MuI2p-le20RfAa_w

    Best thoughts to you in your decision!
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #6
    Rague said:

    We're each unique!
    There is no way that I would have opted out of AI. I've been on Femara for over 1 1/2 yrs now and have no SE's. I'm 65 and was 18 yrs post menopause when DX'd in Aug. '09. I have a different DX that you do - I'm IBC (Inflammatory Breast Cancer) which is VERY aggressive with node (17 positive) involvement. IF Femara had been a problem for me then Dr said we'd try others as there are several. Personally I couldn't have looked Hubby, Son or G-daughter in the face if I hadn't done everything I could and had a reoccurance.

    We are each unique and no 2 have exactly the same reaction to any TX's. Ask all the questions you have and get the most info you can but don't expect to have every thing yourself.

    Susan

    No side effects - 0 - zilch. . well maybe 1
    Janie-
    I'm also 64 and started Arimidex in December 2010. So it's been about 10 months and I've had NO side effects. I was very afraid to swallow that first pill and put it off for several weeks. I was already osteopenic. My onc wanted to put me on a bisphosphanate but my pcp didn't, so I'm just being watched for osteoporosis. I will take a bisphosphate when/if I need to. I don't want to break a bone, but more than that, I don't want breast cancer again.

    The one maybe side effect is my hair (or lack thereof). Don't know if that's attributable to the Arimidex or the chemo, but I think it's because of the chemo. I could stop the Arimidex and see what happens, but nothing might change and I could have a recurrence of cancer. So I wear my wig and hope I'm just a slow responder and I'll get more hair back.

    I put my arm out every three weeks for 12 weeks and said "give it to me" and then watched the nurses gown up so they wouldn't get a drop of it on themselves, but watched the poison drip IN me. I had almost every side effect possible and the last cycle was particularly bad. Then I laid on a table bare chested in front of strangers daily for 21 days and allowed them to radiate my breast. I did all of this willingly because I didn't want cancer to come back. The long term effects of both of these treatments is pretty scarey, too. I actually know a woman who developed leukemia as a result of her chemotherapy.

    So I take my pill faithfully every single day. I hope I don't have any side effects, either long term or while on it. I definitely tolerate it well. Because I have no known side effects, it's worth it to me.

    Suzanne
  • Lynn Smith
    Lynn Smith Member Posts: 1,264 Member
    #7
    Double Whammy said:

    No side effects - 0 - zilch. . well maybe 1
    Janie-
    I'm also 64 and started Arimidex in December 2010. So it's been about 10 months and I've had NO side effects. I was very afraid to swallow that first pill and put it off for several weeks. I was already osteopenic. My onc wanted to put me on a bisphosphanate but my pcp didn't, so I'm just being watched for osteoporosis. I will take a bisphosphate when/if I need to. I don't want to break a bone, but more than that, I don't want breast cancer again.

    The one maybe side effect is my hair (or lack thereof). Don't know if that's attributable to the Arimidex or the chemo, but I think it's because of the chemo. I could stop the Arimidex and see what happens, but nothing might change and I could have a recurrence of cancer. So I wear my wig and hope I'm just a slow responder and I'll get more hair back.

    I put my arm out every three weeks for 12 weeks and said "give it to me" and then watched the nurses gown up so they wouldn't get a drop of it on themselves, but watched the poison drip IN me. I had almost every side effect possible and the last cycle was particularly bad. Then I laid on a table bare chested in front of strangers daily for 21 days and allowed them to radiate my breast. I did all of this willingly because I didn't want cancer to come back. The long term effects of both of these treatments is pretty scarey, too. I actually know a woman who developed leukemia as a result of her chemotherapy.

    So I take my pill faithfully every single day. I hope I don't have any side effects, either long term or while on it. I definitely tolerate it well. Because I have no known side effects, it's worth it to me.

    Suzanne

    Like Suzanne
    I am 64 and waited a few weeks before taking tamox. That first pill worried me so much I had my husband drive me around.If any side effects I wanted to be close to a hospital and not 45 minutes away. I have reactions to lots of meds.Why the fear and just reading those side effects alarmed me.

    My hair is thinning but was thin before and my legs have bad varicose veins.Had those before.So far my bones are OK. I had non invasive DCIS.No chemo or radiation so I really needed some kind of protection.I do miss a pill now and then but have been taking tamox since Dec 2009. I hope no more pills but my friend is a 16 year survivor and took tamox for 5 years and another pill for 5 years.I will see what my doctor says 3 years from now after I finish the tamox. I figure the next pill wont have the serious side effects like tamox.

    It up to you but its worth it to me. If my cancer came back and I didn't take tamox I'm to blame.

    Lynn Smith
  • gagee
    gagee Member Posts: 332
    #8
    I to had the same as you and
    I to had the same as you and same age. I stopped the arimidex because of to many side effects. Ones which still bother me after 10months of being off the med. Sorry to tell you bad things. You have to know that most drugs do things to me and not others. I hope you find some good answers and explanations to this.
    Diana
  • mollieb
    mollieb Member Posts: 148
    #9
    Works for Most People
    People who took aromatase inhibitors and didn't have a recurrence are probably not hanging around this message board. But statistics show that the vast majority of people who take them for five years after a lumpectomy and negative nodes do not have a recurrence. The side effects can be daunting for some people, but others don't have a big problem. and even if you do suffer from side effects, it beats the alternative!
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #10
    mollieb said:

    Works for Most People
    People who took aromatase inhibitors and didn't have a recurrence are probably not hanging around this message board. But statistics show that the vast majority of people who take them for five years after a lumpectomy and negative nodes do not have a recurrence. The side effects can be daunting for some people, but others don't have a big problem. and even if you do suffer from side effects, it beats the alternative!

    Molly's right
    that the women with no side effects are probably not frequenting the boards anymore and have moved on. This board is such a wonderful support for women as they receive their diagnosis, go through treatments, and recover. You know, when having cancer is in the forefront of your life. After recovery many women visit infrequently or not at all. So, what you'll see here are mostly posts about concerns, side effects, milestones, emotions, and support. And that's what we do best here. there are many women "out there" who have completed treatments, take AIs or tamoxifen, and living without any side effects.

    Suzanne
  • New Flower
    New Flower Member Posts: 4,294
    #11
    Double Whammy said:

    Molly's right
    that the women with no side effects are probably not frequenting the boards anymore and have moved on. This board is such a wonderful support for women as they receive their diagnosis, go through treatments, and recover. You know, when having cancer is in the forefront of your life. After recovery many women visit infrequently or not at all. So, what you'll see here are mostly posts about concerns, side effects, milestones, emotions, and support. And that's what we do best here. there are many women "out there" who have completed treatments, take AIs or tamoxifen, and living without any side effects.

    Suzanne

    I have a different opinion
    I think that the majority of those who opted Not to take medication are Not here. It is tough to go Against Both your doctor's recommendations and Standards of Care facing reality of a cancer board.
  • skipper54
    skipper54 Member Posts: 936 Member
    #12
    New Flower said:

    I have a different opinion
    I think that the majority of those who opted Not to take medication are Not here. It is tough to go Against Both your doctor's recommendations and Standards of Care facing reality of a cancer board.

    Only been on Femara for 6 months but
    have had no problems. I was concerned because I'd heard about nasty problems with Tamoxifin but when my onc said 20% inprovement of odds agains recurrance with Femara I went for it. Then discovered a friend who had been in on the trial and had no problems. So far, so good. Each one of us is unique and one can't predict the side effects of another. All that said, it has to be YOUR decision. As siad before, you can try it and give it up if you have too much trouble with the side effects.

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