Wondering ...how many of you

Jean · 10-21-2012, 09:04 AM

are still taking AI after 5 yrs? Just went to see my onc.
for my 6 mo. check up and he is advising 10 yrs. on AI
I am feeling fine on Femara no bad side effects. I am also treated with Zometa.

http://www.dslrf.org/breastcancer/co...PID=20&CATID=0

Found this link on by Dr. Love..on AI
I was highly estrogen positive 90% so my dr. is recommending staying on AI.

Thank you ....
Jean

Becky · 10-21-2012, 09:26 AM

Although I am only moderately ER+ (and PR neg), I was on Tamoxifen for 3 months and then had my ovaries removed to be able to take an AI. I have been on Arimidex 7 years now and with no side effects, my doctor plans to keep me on. His rationale is more to hopefully prevent a new breast cancer from potentially forming rather than prevent the one I had from recurring. He feels that at 8 years, it is the Her2+ aspect of my cancer that is the "devil" and that tends to recur earlier. None the less, I am still on.

My mother has been on Arimidex for over 7.5 years. However, she is going off because her bones are so terrible, her bone risks (which have included 2 fractures at this point) are greater than a recurrance - especially since she has been on Arimidex for over the 5 year period. Her tumor was only 4mm, strongly ER and PR positive and not Her2+. Although the thought process is different for each of us, I believe she should stop.

sassy · 10-21-2012, 10:41 AM

I was triple positive and have been on Arimidex for 7 1/2 years (with a foray into both Femara and Exemestane to explore side effects).

My onc feels strongly that continuing is in my best interest. I am currently however looking into some options in how to continue because I do have significant side effects.

Donna · 10-21-2012, 10:48 AM

I was just having this conversation with another breast cancer survivor. The way I understand it - admittedly not well - is that fat produces aromatase which is then converted to estrogen. I am overweight and my tumors were super strong er so I expect to be on Femara for the rest of my life.

Am I understanding what little I do correctly? Have there been any further studies on taking these beyond 5 years? Wasn't 5 years a basically arbitrary number?

I am soooo grateful that my joint aches fell away, no more side effects of that nature. I think if I still had the pain that came from them I would have been more aggressive about investigating the time period necessary to stay on AI's.

Love to you all, Donna

and Pray for our Sheila!

karen z · 10-21-2012, 10:57 AM

Hi.
I was diagnosed at age 53 but still having periods (until that first round of chemo!!!). My oncologist had me on Tamoxifen for two years and I am now coming up on five years of Femara (so have had seven years of something or other). My doc was fine with me getting off Femara after four years but I talked to Eric Winer last year at SABCS and he said he would keep me on for an additional year (that would be until this upcoming January) and then "call it a day". My oncologist was fine with this recommendation. So, I am due to go off Femara (unless I insist on staying on longer or new results come in related to the issue) in just a few months. I am nervous to go off Femara although a bit bolstered by EW's recommendation last year. I will be listening carefully to what is being said on this issue this year at SABCS. I am guessing I will try to hunt down EW again !!! Right now, my oncologist (who has always been very aggressive with me- I had Herceptin/chemo for early stage in 2005) does not seem to be keeping people on AIs longer than 5 years. So, I am confused and will continue to investigate. I tolerate Femara well although do have joint issues. So far, my bone density scans have been normal. I am not sure how helpful this (o.k., I am confused still) but this is what I know so far.

Patb · 10-21-2012, 12:32 PM

I am coming up to six years, five on arimidex and one
femara and have some bone issues and stiffness.
Its my life line so when I see the Dr., we will discuss,
last year he said maybe 2% help with over five years?
patb

jaykay · 10-21-2012, 03:18 PM

I went off of Femara after five years about 2.5 years ago. My oncologist gave me the option of staying on, saying that studies were in progress but nothing definitive had come out of the studies yet.

With my recurrence (or new cancer), I've been 2nd guessing myself. I know her2 is aggressive and I also wonder how much of a brake Femara was providing.

As always, hindsight is 20/20. If I had the chance for a "do- over", I'd live with the minor aches and pains and stay on the AI.

Just IMHO ...

Janis

karen z · 10-21-2012, 05:06 PM

Is anyone aware of any very recent (last year or so) articles on this issue? This is an important issue and, as of last year, little data existed to guide doctors on future plans (I got that from my oncologist and actually two oncologists I talked to at SABCS- after I last posted I remembered that I had also talked to a second oncologist from Dana Farber whose recommendation was basically that he would give patients a choice between 4-6 years after 2 years of Tamoxifen- please note that he was speaking to me about my personal situation). The different recommendations and lack of consensus "out there" is troubling and I know (at this point) that oncologists may have different tolerance levels or decision criteria related to the lack of data. And I gathered last year that comparisons of five vs ten years on AIs were not getting a lot of research participant "takers" so I wonder what research is going on at present........

Jean · 10-21-2012, 11:30 PM

Thank you all dear sisters,
Karen that would be great while you are out at SABC to find an updated information for us.

As always I am grateful to hear from all.
Hugs,
Jean

karen z · 10-22-2012, 10:26 AM

Hi Jean,
I will do my best and be on the lookout !
K

tricia keegan · 10-22-2012, 03:20 PM

My Onc gave me the option of seven years Jean which In agreed to, happy to do longer if it keeps me cancer free!

Jean · 10-23-2012, 07:26 PM

Again, Thank you dear ones for your response.
May we all remain NED...

God Bless,
jean

tricia keegan · 10-24-2012, 01:22 PM

I'm six years now on Arimidex and noticing the "Trigger thumb" beginning again that I had in the early days of taking this drug, I can live with it but its annoying and just wondering if anyone else had noticed increased side effects after five years ??