Stopped Femara/Letrozole

[Westcoastgirl]

Hello Ladies,

It has been some time since last I visited this site. When I was first diagnosed and throughout my treatments I found this site to be one of support, knowledge, and experience, and have come once again seeking wisdom.

I am well over my 5 year mark now, have found my new normal, and the dread of breast cancer has passed (well to a degree it has but isn't it always nearby and easily nudged?). I had completed 4 years and 4 months of Femara when I decided to stop 2 months ago, much against my oncologist's wishes. We agreed on me stopping Fermara for 3 months. I have many problems I felt were side effects, but as my oncologist kept saying, the side effects I claimed could also be a result of ageing (62), not the result of taking Femara, so I kept taking it.

I am a much, much older version of myself than I should have been without breast cancer, having gone into this illness very fit and strong, I am now very careful, stumble and injure easily and struggle with my energy. I manage my pain with exercise but there are days it gets me down. I thought I could manage all of this to complete the Femara but the killer was I also went from very thick hair to extremely thin hair that barely covers the thin spots.

And now for the kicker~In two months I have not noticed any improvement in any of the problems I attributed to Femara and I know when I go back in a month to see my onc he will want me back on Femara and tell me all my side effects are a result of ageing...more than half my hair in 4 years...hmmm. I would think my body would need at least three months to adjust to being off Femara and then perhaps another 3 months to see a real difference. I suspect that for some of us the side effects in chemo/herceptin, or radiation, or hormonal therapy, or whatever therapy can be permanent.

I think I am ready to just move on now and accept whatever comes to pass in the future, take my chances. After everything I have done for breast cancer I can't see it coming down to 8 months of Femara. I don't think I will be able to go back on Femara.

As always your opinions are valued. Thank you, Carolyn

[tricia keegan]

Hi Carolyn, I'm nine years out and still on Arimidex, I do have joint/bone stiffness and not sure if its the drug or aging these past years since BC but scared to stop, still prefer this to BC any day so I continue but will be interested in how I feel when I stop too. Maybe it takes longer to adjust when we quit the A1's!!!

[roz123]

firstly congrats on being 5+ yrs out

I just read a study and I think someone posted it here that extended hormone therapy was shown to benefit er+ but her2 - BC but that they same benefit (therapy after 5yrs) was not shown for her2 positive er+ BC. Lani is usually up on all this stuff so maybe she can chime in.
ask your onc if this study is significant enough, applicable to your case etc

[sarah]

Hello,
Sorry you're suffering. I was on Femara for 6 years but if I had known what I know now, I would have stayed on it for 10. I took it at night - my onc said I would have less side effects.
Are you exercising? going to a gym? yoga is good also for strengthening the body and focusing the mind. Socializing is also important and having something to do especially if it is helping others.
I would dare to suggest that if your onc suggests re-starting Femara that you consider it. Being alive is so much fun, I think the costs we pay to be here are worth it.
Due to radiation I had a heart attack and angioplasty and stent put in, a lung now has fibrosis and breathing is a problem particularly with walking uphill but I am so happy to be here.
Your life is in you hands and being pro-active is good. For me the treatments were heavy and had hard side effects but the price to live is worth paying.
health and happiness
sarah

[Hopeful]

Carolyn,

I believe you are right, that many of the changes we experience due to bc drugs are permanent, not temporary, as the doctors want us to believe. I think we should be advised of that in order to make a fully informed decision to do treatment before hand. My permanent changes include tinnitus from the Femara and a drippy left nostril from the Herceptin. My hair has also thinned considerably. I went off the AI's at exactly 3 years; I did not have chemotherapy. I get the occasional carpel tunnel like twinges that I did not have before AI's, but no aches, and my energy levels are the same as they have always been. However, the sexual side effects of the AI's have been severe. My rads onc that I still see told me that efficacy was seen for 2 years on the AI's, and she was fine with me stopping. My onc didn't put up much resistance, he said they picked 5 years arbitrarily to do the clinical trials, and that is why they rx for that duration. He said the drug companies are probably unhappy that they didn't push for ten years at the start, it would be more profitable.

I am currently 60 years old; was dx at age 52. Take care, and best of luck to you.

Hopeful

[Laurel]

I stopped Femara after 3 years. Initially I took Tamoxifen until determined to be menopausal whereupon I switched to the A.I., but after 3 years I just could not continue due to the side effects. To finish out my five years I went back on Tamoxifen. My 5 year anti-hormonal tenure is complete, but of course my Onc. now urges 10 years. I am taking Tamoxifen until I develop side effects or just get too tired of the stuff. That was my commitment to her: I'll do it until it gets tough and then I quit.

Enjoying life is important too.

[Westcoastgirl]

Thank you ladies,

It has helped me to read your responses. Thank you for taking the time to respond to me. Despite some choosing a different path than me, I felt supported and thank you for the references to research, always helpful! It has been good for me to return to the site so I can once again be positive, count my blessings, read current information, and move on.

Cheers, Carolyn