how long to take aromasin?

mamasurvivor
mamasurvivor Member Posts: 5
in Breast Cancer #1
I will be seeing my oncologist soon to discuss whether to stay on aromasin (exemestane) after 5 years of it and 2 years before that of tamoxifen. Does anyone know of any research or have personal experience with how long one should stay on it? This is my first day as a "member" of this site. Is there spellcheck? :o)

Comments

  • linny b
    linny b Member Posts: 25
    #2
    aromasin
    Hi, I was also told I would be on it for 5 years, after having been on tamoxifen for 2 1/2 years. I believe the 5 years is based on studies and percentages concerning the benefits of taking it for 5 years. I also wondered about the 5 years, why not 7yrs or 10 yrs or forever? Hopefully someone else can add their thoughts. Take care. Linny
  • New Flower
    New Flower Member Posts: 4,294
    #3
    linny b said:

    aromasin
    Hi, I was also told I would be on it for 5 years, after having been on tamoxifen for 2 1/2 years. I believe the 5 years is based on studies and percentages concerning the benefits of taking it for 5 years. I also wondered about the 5 years, why not 7yrs or 10 yrs or forever? Hopefully someone else can add their thoughts. Take care. Linny

    Clinical studies for 5 years
    Clinical studies for aromatase inhibitors were done for 5 years. When I was doing e my research 2 years ago I have not came across any studies which went beyond 5 years. Please Let us know what your oncologist will say.
    Hugs
  • mamasurvivor
    mamasurvivor Member Posts: 5
    #4
    New Flower said:

    Clinical studies for 5 years
    Clinical studies for aromatase inhibitors were done for 5 years. When I was doing e my research 2 years ago I have not came across any studies which went beyond 5 years. Please Let us know what your oncologist will say.
    Hugs

    aromasin
    My oncologist confirmed what you have said; the studies were only done for 5 years and are not yet conclusive for whether it is beneficial to take it longer. She said it was my choice so for now I decided to continue. Now that it is available in generic form it is much cheaper which is nice. Thanks for your responses. We will have to continue to monitor studies.
  • Rague
    Rague Member Posts: 3,653 Member
    #5
    I've been on Femara for
    I've been on Femara for almost 2 years. When I started it, I was told I'd be on it for 5 years. The last time I saw Dr.T he siad that the latest research was showing that IBC should never come off what they are on.
  • cabbott
    cabbott Member Posts: 1,039 Member
    #6
    linny b said:

    aromasin
    Hi, I was also told I would be on it for 5 years, after having been on tamoxifen for 2 1/2 years. I believe the 5 years is based on studies and percentages concerning the benefits of taking it for 5 years. I also wondered about the 5 years, why not 7yrs or 10 yrs or forever? Hopefully someone else can add their thoughts. Take care. Linny

    Longer studies
    Longer studies are not conclusive so far. Right now I'm past my 5 year mark and off the aromatase inhibitors. However, my oncologist has asked me to come back yearly in case the long range study shows that staying on the drug could be helpful. I will hear from him again in August. Perhaps by then we will have an answer.
  • tufi000
    tufi000 Member Posts: 745 Member
    #7
    Since 2002
    I have been on arimidex since 2002. At 5 yrs my doc said there were no studies yet for beyond that though it did not appear to lessen in its effectiveness like tamoxafin does and it was up to me. I said I would like to continue and he said I am doing so well it can't hurt and called me the poster lady for arimidex. We both see no reason to stop and I know I feel less anxious about a recurrence.
  • SIROD
    SIROD Member Posts: 2,194 Member
    #8
    Five Is The Norm
    Aromatase Inhibitor have lots of serious side effects, among them are bones being deprived of estrogen. I hope they have given you some sort of bone strengthener which is very important on AI (Fosamax, Boniva or any of the other bisphosphonates). I fell while using Arimidex and fractured three vertebrae. At that time, they were just beginning to see what AI's did to the body.

    We make estrogen all our life via the adrenal gland for those of us in past menopause. When a drug depletes the body of hormones for so long a time, it takes it's toll. Unless there is a reason to be on it such as stage IV or IBC, then you don't want to be on this drug.

    Best wishes using Aromasin.

    Doris

    PS: I have used Femara, Arimidex (both AI's) along with Tamoxifen and Faslodex. Aromasin is my reserve or last hope. I have had lots of experience.
  • SIROD
    SIROD Member Posts: 2,194 Member
    #9
    tufi000 said:

    Since 2002
    I have been on arimidex since 2002. At 5 yrs my doc said there were no studies yet for beyond that though it did not appear to lessen in its effectiveness like tamoxafin does and it was up to me. I said I would like to continue and he said I am doing so well it can't hurt and called me the poster lady for arimidex. We both see no reason to stop and I know I feel less anxious about a recurrence.

    Tufi000 - Bones??
    How about your bones? What are being done for them?

    Best,

    Doris
  • cb36
    cb36 Member Posts: 2
    #10
    How long Aromasin
    After a local recurrence in 1998, I took Femara for 5 years. After that, I went on Aromasin (since 2003) and I am still on it. I have debated pros and cons with my oncologist, but since I have no side effect (my bones did not lose density) it makes sense to continue as prevention.

    Interestingly, there is a study of the benefits of very long term hormonal therapy for prostate cancer that shows that continuing therapy over 10 years is beneficial.

    As to breast cancer, we do not yet know about long term benefits of anti-estrogen therapy simply because there are no statistical data beyond 5 years, but I suspect that, since breast cancer is often slow growing, long term therapy may be beneficial.
  • SIROD
    SIROD Member Posts: 2,194 Member
    #11
    cb36 said:

    How long Aromasin
    After a local recurrence in 1998, I took Femara for 5 years. After that, I went on Aromasin (since 2003) and I am still on it. I have debated pros and cons with my oncologist, but since I have no side effect (my bones did not lose density) it makes sense to continue as prevention.

    Interestingly, there is a study of the benefits of very long term hormonal therapy for prostate cancer that shows that continuing therapy over 10 years is beneficial.

    As to breast cancer, we do not yet know about long term benefits of anti-estrogen therapy simply because there are no statistical data beyond 5 years, but I suspect that, since breast cancer is often slow growing, long term therapy may be beneficial.

    Been Over 10 Years, at least with Arimidex, where are the stats?
    Dear CB,

    All the years I have been on AI's they would say, we only have statistics for 5 years. How come? It was in trial before being allowed to be given to the general public. I was on Arimidex in early '99, it will be almost 13 years soon so why not 10 years of data.

    Wonder who would have these stats?

    Best,

    Doris
  • cb36
    cb36 Member Posts: 2
    #12
    SIROD said:

    Been Over 10 Years, at least with Arimidex, where are the stats?
    Dear CB,

    All the years I have been on AI's they would say, we only have statistics for 5 years. How come? It was in trial before being allowed to be given to the general public. I was on Arimidex in early '99, it will be almost 13 years soon so why not 10 years of data.

    Wonder who would have these stats?

    Best,

    Doris

    Over 10 years
    Doris,

    we are the guinea pigs. Most women stop taking AIs after 5 years, so there are no large numbers to draw upon. Statistics come from clinical trials, and I do not know of long term trials with AIs.

    There is anecdotal evidence, however, that women (like us) do very well on long term AIs. I am certainly not stopping taking Aromasin. My oncologist tells me many other women are in my condition: they refuse to quit. I wonder whether we will have long term negative affects of some sort that have not yet been discovered.

    Best,
    Cristina
  • tufi000
    tufi000 Member Posts: 745 Member
    #13
    SIROD said:

    Tufi000 - Bones??
    How about your bones? What are being done for them?

    Best,

    Doris

    Actonel, bones all good

    Actonel, bones all good
  • mollyz
    mollyz Member Posts: 756 Member
    #14
    cb36 said:

    Over 10 years
    Doris,

    we are the guinea pigs. Most women stop taking AIs after 5 years, so there are no large numbers to draw upon. Statistics come from clinical trials, and I do not know of long term trials with AIs.

    There is anecdotal evidence, however, that women (like us) do very well on long term AIs. I am certainly not stopping taking Aromasin. My oncologist tells me many other women are in my condition: they refuse to quit. I wonder whether we will have long term negative affects of some sort that have not yet been discovered.

    Best,
    Cristina

    I'm on femara
    I've been on femara for about 8 months and so much joint pain i don't think i would want to go past 5 years, I've been on pain relievers and they didn't seem to help i mean one day i feel fine and the next i can't hardly go,I have had a bone strengthening shot (prolia).I do believe we are guinea pigs because it's so much the Dr's can answer and you believe what they're saying and then it's some answers they give you you just don't believe.~~MollyZ~~
  • pittsburghbonnie
    pittsburghbonnie Member Posts: 1
    #15
    mollyz said:

    I'm on femara
    I've been on femara for about 8 months and so much joint pain i don't think i would want to go past 5 years, I've been on pain relievers and they didn't seem to help i mean one day i feel fine and the next i can't hardly go,I have had a bone strengthening shot (prolia).I do believe we are guinea pigs because it's so much the Dr's can answer and you believe what they're saying and then it's some answers they give you you just don't believe.~~MollyZ~~

    I quit after two weeks!
    I was on Tamoxifin for 1 year and recently was switched for femara. I had so much back pain I couldn't sit, or sleep, even standing for long periods of time hurt. I called my onc and she told me it is "protocol" and up to me. So I stopped. I haven'e felt better since before chemo!
  • mollyz
    mollyz Member Posts: 756 Member
    #16
    pittsburghbonnie said:

    I quit after two weeks!
    I was on Tamoxifin for 1 year and recently was switched for femara. I had so much back pain I couldn't sit, or sleep, even standing for long periods of time hurt. I called my onc and she told me it is "protocol" and up to me. So I stopped. I haven'e felt better since before chemo!

    @pittsburghbonnie
    So your not on any protection for recurrence? ~~MollyZ~~
  • Gayle Reich
    Gayle Reich Member Posts: 1
    #17
    Exemestane

    Hi everyone,

    I was diagnosed in August 2005 for stage 2 breast cancer. I had adouble mastectomy, months of hard core I.V. chemo, two years of tamoxifen, and am on my 6th year of exemestane. That's about 8 years total on some sort of chemo steroidal treatment.

    I've recently found myself having strange thoughts, angry thoughts that have never been a part of my personality. My heart was also pounding hard against my mattress when I went to bed every night. My Oncologist said I could go off it for 2 weeks, but he said it wasn't the drugs doing it.

    I do, however, feel much more like myself being off it 2 weeks and I am sure it was all the treatment finally catching up with me.

    Now I have to call the Dr. back soon and I know he's going to disagree with me. He wanted me to stay on it for 10 years total. I wonder if he's been guinea pigging me, as I've learned he has had zero patients take it longer than a year or two because of side effects  and they just wanted to get back to their lives.

    It's been 8 years and I want to get back to myself too ... but I'm scared.

    Any feedback would be greatly appreciatedLaughing

     

  • melia
    melia Member Posts: 1
    #18
    Gayle Reich said:

    Exemestane

    Hi everyone,

    I was diagnosed in August 2005 for stage 2 breast cancer. I had adouble mastectomy, months of hard core I.V. chemo, two years of tamoxifen, and am on my 6th year of exemestane. That's about 8 years total on some sort of chemo steroidal treatment.

    I've recently found myself having strange thoughts, angry thoughts that have never been a part of my personality. My heart was also pounding hard against my mattress when I went to bed every night. My Oncologist said I could go off it for 2 weeks, but he said it wasn't the drugs doing it.

    I do, however, feel much more like myself being off it 2 weeks and I am sure it was all the treatment finally catching up with me.

    Now I have to call the Dr. back soon and I know he's going to disagree with me. He wanted me to stay on it for 10 years total. I wonder if he's been guinea pigging me, as I've learned he has had zero patients take it longer than a year or two because of side effects  and they just wanted to get back to their lives.

    It's been 8 years and I want to get back to myself too ... but I'm scared.

    Any feedback would be greatly appreciatedLaughing

     

    exemestane

    hi Gayle! i have been on exemestane for past 7 years and i feel just like you do! I was stage one , had lumpectomy, radiation, tamoxifen for 2 years and exemestane for 5. im scared to stop also. recently my copay at pharmacy tripled so it just gets me wondering again. if you get any helpful feedback, id love to hear. 

    best regards Cool

  • birde1
    birde1 Member Posts: 1 *
    #19

    Hello Ladies,

    I strongly encourage everyone to take Aromasin as long as you can tolerate. I had breast cancer in 2000, by the end of 2001, I had the usual chemo, radiation, and double mastectomy. I took tamoxifin, but not faithfully ( it hurt my bones), I then tried Famora (which was better) - all in all, I would guess for about 5-7 years. Then in 2017 I was diagnosed with stage 4 breast cancer, it spread to my left lung and thoracic area (thank goodness it was not lung cancer). I had had to have chemo all over again, and now I take Aromasin.

    I’m not going to stop unless I have to.

  • thora
    thora Member Posts: 32 Member
    #20

    I was diagnosed with Stage 1 IBC and had lumpectomy and sentinel node biopsy. Margins clear and lymph nodes negative. I turned down radiation but considering aromatase inhibitors due to this is a contralateral tumor. I had a lumpectomy for DCIS in 2013 in my other breast. Trying to research what the exact percent reduction in recurrence for ER positive HER2 negative IBC using aromatase inhibitors. Does anyone know? Thanks in advance.

    thora

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