Going off Arimidex BEFORE 5 years

Suz777....I took AI's for 3 1/2 years....I made the rounds of all of them...the last 2 1/2 years on Aromasin....for me the side effects were just getting too much to bear....I wanted my QOL of life back...its been 4 months since I stopped and I don't know if I will go back on them or not....I saw my onc in May after a 2 month break...his preference is that I take something, but he was willing to support my decision to stop since I had tried them all and as he said, "gave it my best shot"....cognitive functioning, memory, mood, joint pain and insomnia are all improved since stopping the AI's....are things back to before BC...no....but things are better.....I know that I am increasing my risk for reoccurance, but there is no guarantee that it wouldn't come back if I stayed on...rather take my chances....I think I would feel worse if I stayed on them and it came back and I strugged with lousy QOL, then feeling good and taking my chances....I know the statistics for me....and lately I've been able to ignore them....but I look at it this way its either 100% or 0%!!! Good luck in making your decision....

I agree with Member, you and your DOCTOR should be calling the shots!! And if the effexor is working for you, why on earth would you be going off it anyway?! DEMAND to talk to your doctor, you are the consumer and they are suppose to be working FOR you!!! And you would want to talk to him/her about your own personal risks/benefits of staying on or going off or of trying something else anyway; there are other Als that you might have less SE with. I would want to try one of them anyway before deciding to go together. Go back and make some waves!!! Good Luck! Ruth

Pam, I just had this conversation with my oncologist. Everyone's risk of reoccurence diminishes with time. Every year you go without a reoccurence drops your chance of it ever coming back. Here is where the words 'higher risk' comes in. For triple negative ladies, their risk of reoccurence is higher than estrogen positive ladies during the first 5 years (maybe because they can't do the anti-hormonals) and then really drops off at the 'magic' 5 year mark, so that they can feel pretty 'safe' if they've gotten that far. For us estrogen positive gals, our risk continues to decline, but never goes away entirely. Some estrogen driven cancers can resurface decades later. That is why the studies about 'do Als continue to be effective after 5 years' are so important. If they aren't there's no use taking them, if they are.....then that would have to be something to consider based on your own diagnosis, age etc. (I have 2 years left so hopefully they will have more answers then), but my oncologist said that, based on the studies he's seen, he is recommending that young(ish) ladies whose bones have held up and who haven't had bad SE at least consider extending their Als. Stay tuned!

What IS it with you people and this QOF stuff.?  My QOF is always to be miserable!  That is the best way to survive this pathetic life.  My daughter and I got into a big fight last night because she has been brainwashed by other people (certainly NOT me) that she is supposed to enjoy life and now when bad things happen she has a hard time handling them.  If you expect to be miserable think how wonderful it feels on the days you aren't!!  This is why I am able to cope with my second miserable go round with another hopefully 5 years of Arimidex.  It can't  mess up my QOF if I make sure I am already miserable.  I should go be a therapist for cancer survivors and teach them the secret to survival for ANY chronic disease.  It gives me such JOY to be able to share my life secrets with any who are brilliant enough to understand them   

Gosh, my quality of life is excellant, and if it weren't I would certainly be exploring ways to make it better!

Suz - I asked my onc the same question - what exactly are my specific, individual risk factors if I go off Arimidex?  I wanted him to consider the facts that my tumor was less than 1cm, Stage 1, Grade 1 and triple positive, as well as the fact that I used the "big guns" at the start - a mastecomy, chemo and a year of Herceptin. He never gave me the stats I wanted (he said being Her2+, Aduvant Online formulas don't work). Did you ever check out Aduvant Online? It should give you the numbers you want since you are Her2-. You need to sign-up as if you were a health-care professional - but it's free. Here's the link:

http://www.adjuvantonline.com/index.jsp

My Onc did agree to give me a "vacation" from Arimidex for the summer because after two and a half years, the cumulative SEs were causing me serious joint pain and exhaustion. Less than three weeks off the little white pill, I'm feeling soooo much more energetic it amazes me! My joint pain is better - not completely gone unfortunately (I read that takes quite a while) but at least I can enjoy the summer without collapsing with exhaustion. Have you asked your Onc if you can take a vacation? Perhaps if you switch to another AI your SEs will improve? Definitely talk to your Onc and I hope he has better answers for you as to your individual risk factors.