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adenacb
adenacb Member Posts: 89
edited June 2014 in Hormonal Therapy - Before, During, and After

Hello, everyone,

It's hard to believe it's been 5 years since my diagnosis, and that I've been on Tamoxifen for almost 5 years. Things are going well overall, but I just went to a new oncologist (as my other 2 left the practice) and I am faced with some decisions. The new research shows that it's better to be on hormonal therapy for 10 instead of 5 years. I had a blood clot on Tamoxifen and my onc things that might be a reason to take me off. We are trying to determine if I'm pre or post menopausal via a blood test. He wants to switch me to an AI. I am worried about the side effects of AIs and also I would need to have my ovaries removed OR go on Lupron shots in order to take the AI (assume I'm not post menopausal). What do others think about the 10 year recommendation? How have you found AI side effects vs. Tamoxifen side effects? Thanks in advance for your advice.

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited May 2014

    Hi Adenabc I can't answer for the ten year bit as I have no choice as to how long I'm on the Al but your question about SE's of the AI's against Tamoxifen I can tell you my experience with both.

    I had a terrible reaction to Tamoxifen to the point that after three weeks on it, it put me in hospital.  The first AI for me was Arimidex and the SE's were as listed and I think I had them all so after fifteen months of hell I was changed to Femara.  This one for me has been a breeze........yes I do have SE's but they are mild and come and go........my major one was hot flashes but over the years they have eased and now I have very few.

    All of these meds are so different as are we and our reactions to them.  The only way to know how you are going to react is to try them and if the SE's are unbearable then ask your onc to change you over to one of the others.........there are always options.

    Hope this helps.

    Love n hugs.    Chrissy

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited May 2014

    adenacb - I'm only a year in but getting close to postmenopausal. I had the hormone test to see if I can switch, but I'm not there yet. I've decided to reframe the whole AI issue by focusing on the fact that compared to Tamoxifen (around 30% reduction in recurrence for me) AIs will give me a 50- 70% reduction in recurrence. As far as the 5 vs 10 year thing, I think I will do whatever my onco recommends. Congratulations on nearly five years! You go girl!

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited May 2014

    Hi

    congrats on the 5 years. I am at the 5.5. year mark and have my oncology appt next week where I plan to go off AI (I was on femara).  I was pre-menopausal at dx but could not take tamoxifen..so went on lupron and femara.  Was on lupron for at least 3 years (monthly shots)... then it seemed like I was in menopause so I went off after 3 years.

    My  onc is at Dana Farber--at our last meeting she said she was not convinced that 10 years was better.  She is also a major researcher.  I am going off regardless---if her position has changed, I will go back on in the fall--- the SE's have not been terrible but I just want to feel like "myself" again..... I am still young and have lots of life to live and I don't want to do it on drugs.  

    Every onc is different.... yours may have a different take on this.... but this is actually my decision--I had a slow growing tumore, I appear to be at a low risk for recurrence and I am just tired of the drugs.... need a break and so does my body....

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