CSN Login
Members Online: 6

how long to take aromasin?

mamasurvivor
Posts: 4
Joined: Dec 2011

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)

linny b's picture
linny b
Posts: 25
Joined: Jul 2011

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
Posts: 4140
Joined: Aug 2009

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
Posts: 4
Joined: Dec 2011

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.

cabbott
Posts: 1046
Joined: Aug 2006

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.

Rague
Posts: 3388
Joined: Aug 2009

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.

tufi000's picture
tufi000
Posts: 471
Joined: Jun 2005

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's picture
SIROD
Posts: 2204
Joined: Jun 2010

How about your bones? What are being done for them?

Best,

Doris

tufi000's picture
tufi000
Posts: 471
Joined: Jun 2005

Actonel, bones all good

SIROD's picture
SIROD
Posts: 2204
Joined: Jun 2010

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.

cb36
Posts: 2
Joined: Dec 2011

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's picture
SIROD
Posts: 2204
Joined: Jun 2010

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
Posts: 2
Joined: Dec 2011

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

mollyz's picture
mollyz
Posts: 739
Joined: Sep 2010

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
Posts: 1
Joined: Dec 2011

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's picture
mollyz
Posts: 739
Joined: Sep 2010

So your not on any protection for recurrence? ~~MollyZ~~

Gayle Reich's picture
Gayle Reich
Posts: 1
Joined: Sep 2013

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

 

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network