How Many are doing 10 years on Aromatase Inhibitors
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Jackie that is based on your diagnosis and age. It will be different for others.
Right now its (In the USA):
- Sloan Kettering
- MD Anderson
- Mayo Clinic
- Dana-Farber/Brigham & Women's
- John Hopkins
- U of Washington
- Mass General
- UCSF
- UCLA
Standford
This list changes order all the time. MD Anderson had been #1 for several years in a row but not this year. All of these are tops. linky
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Lago-yes, mea culpa. I worded that poorly, just trying to say that one (as in me) automatically assumes chemo would always be more powerful than a pill you could take like an ai in averting recurrence I was wrong, and surprised. Hope I didn't send anyone down the wrong track.
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Jackiebirdie I know you understand. Just clarifying for some newbies who might not read it the right way.
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Like Ruth, I stopped AIs after 5 years. My MO has reviewed the studies and thus far nothing definitive has been published indicating that 10 years of AIs is best, especially given that AIs are not risk-free and can cause their own health issues (bone loss, weight gain, cholesterol, etc.). My MO said that if something came out to indicate otherwise for my status, she'd contact me prior to my normal annual appt to discuss. So far I've heard nothing. My next regularly-scheduled appt is in July, so we'll see what she says then. I will definitely post if I hear from my MO sooner than that on this issue.
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My five years on Anastrozole is up March 24th, 2015. When i was first diagnosed with Breast Cancer I had an Oncotype score of 29 which at that time was a "grey" area for chemo. Since I was also diagnosed with a chronic leukemia at the same time I decided to not take chemo. Now studies show that I have a high probability of the cancer returning. As a result, my oncologists wants me to take the Anastrozole for another five years. I am going forward with the continuation of the med but have also told myself I don't have to committ to another five years, just take it year by year.
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my dear Italychick: please don't post less about your bike rides and other exercise. I for one find it exciting and inspirational and helps motivate me to do what I can at my level. This is who you are. It's who you were before the beast tried to strike you down. You are loved because of who you are.
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Thanks LindaKR for referring me to this site.
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after being on aromasin for almost 9 years now, I am so used to taking it that I am wondering if I should just take it as long as I can!! I have finally lost some weight, and my cholesterol is coming down!! I feel pretty good, so I will ask my onc if she thinks. I should continue taking it after 10 years, which will be next April!!
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Kindergarten (Kathy), I hope I am not asking this question again. Did your oncologist provide the reason that you have been on AI for almost 10 years?
MsP
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MsPharoah- I believe it's due to the recent results from the SOFT study. My BS said same thing.
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MsP, no problem! I had Stage 2B bi-lateral Breast cancer, grade 3 with one positive node!! I may be on it longer, not sur
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Thanks, Kindergarten. I have been on Femara for 19 months and I am just getting to the point where I don't have random SE and have learned how to manage them. I now know what time of day to take the little pill, how much and what type of exercise is best for me and thanks to a kind woman on bco.org, I take my statin at a different time of day from the letrozole, with fantastic results. So that said, I am watching for all the news on extending aromatase inhibitors as I would be willing to continue if there is a good reason. Maybe there will be a cure before they know for sure about this. Wouldn't that be wonderful?
MsP
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of, course, MsP!! I wish you well on the Femara😊 so praying for that cure!! Have a wonderful day, Hon!!!
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So will be staying on arimidex for full 10 years. This is totally my choice though recommended by my MO.
New MO since my move to FL. Was initially wondering about her as she 'appears' no more than 19 years old! She actually is new in this area, came from the Mayo Clinic. I really like her and was impressed as she just talked about many things without being asked, trials, tumor markers, etc. She asked several times about my SE's on arimidex and when she was satisfied that I had few and now don't really have any, she then suggested I stay on for the full 10 years as long as the dexa scan she ordered does not show any bone loss. I have been on for about 6-1/2 years. If the trials now going on (another year or two probably) determine that 10 years is not indicated, then I stop but if they conclude that 10 years is of benefit then I will be right there on track.
Regarding tumor markers, she does not routinely recommend them as they are not reliable, creating many false positives or showing elevation where there is no purpose, and tends to create anxiety. I am not an 'anxious' type person and so chose to have them done just for the heck of it, I guess because my BC was ILC. They would have to be extremely high for us to go extra steps.
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http://www.biotheranostics.com/patients/bci/
Informational only. I'm not endorsing or making any claims.
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I just had the Breast Cancer Index performed and am awaiting the results.
"Breast Cancer Index (or BCI) is a new test to help determine if you are likely to benefit from an additional five years of anti-estrogen medication. BCI can also provide additional clarity around the risk of cancer returning between 5-10 years after diagnosis.
BCI requires no additional procedure for you. The test is run on the very same tumor specimen that was removed at diagnosis. BCI provides results that may help you and your doctor customize your treatment path."
There is more information here: http://www.biotheranostics.com/patients/bci/
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I've written this, I think I remember I did! on another board, but my MO told me in Sept at my last check up that I might as well plan on AIs for a full ten years because of my status, my risk, and my high ER+ rating. She told me that definitive research results for 10 yrs vs. 5 years for many of us will be released soon--I think she said this month, perhaps--but since I'm already so high risk I'll be on it for 10 years regardless, she said. So far exemestane has been the best of the worst, since I moved from tamox pre-meno to arimidex post meno, AWFUL side effects, to aromasin.
Sigh.
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claireinaz, I think for those of us with ILC we would rather err on the side of 'hitting it with everything we've got', staying on for the long haul, until told otherwise, especiallly if SE's are manageable. But I do know many do not have the success with SE's that I have had and my heart cries for each of them. I hope your MO is correct and results will be released soon. My MO said maybe one or two years left before studies are released.
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HI Everyone,
I am coming up on 5 years on an AI - yeah! I know that I will probably continue but I am sick of the side effects of AI (not complaining, but want a break/change). Anyone thinking of doing Tamoxifen after their 5 years of an AI? I am interested in getting a break from vaginal atrophy and arthritis and trying a different set of side effects - lol. Just wondering if anyone else is thinking about/doing this? I will see my onc in a couple of months and I know he will likely want me to stay on something (or so he has hinted..) Love to hear your thoughts!
Best
Beau
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Beau I did switch to Exemestane from Anastrozole and found for me the SE weren't as bad.
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Many here have donated . Thank you !........Wandering around and cheerleading again
Donate today, make a difference directly in all our lives. By supporting BCO, we support each other. Thanks and Hugs
https://community.breastcancer.org/forum/110/topic/834331?page=1
Link to the mainboard donation page
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Just saw my MO today. She said the results have not been released on 10 years on AI. She stated that they won't release early info unless they see a dramatic change or when the study is done. The way the study works if 10 years on the AI then seeing what happens after the 10 years as far as increased/no increase in reduced recurrence. She is hoping that something will be said at the San Antonio Conference.
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My MO told me today at my semi-annual checkup that absolutely I am a perfect candidate for 10 years on AIs -
high risk - big tumor - lots of nodes. And my bones are holding up 3 years into it.
He said, "plan on it."
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Denise-G my MO told me last April she wants me on it for 10 years due to tumor size.
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Hello ladies, Nice to see that the post I put up 2.5 years ago is still going.
I continue to take Femara and am now at the 7.5 years of taking it. My bone density started to take a real dive 12 months ago, and I am experiencing the full range of side affects that some of the other ladies are having, however at this stage the oncologist wants me to continue on Femara if I can cope.
He said if I really could not tolerate it anymore then the other option for me would be to start Tamoxifen as I needed to at least have 10 years of something. He said with the positive node and high percentage of ER & PR I need to continue taking something. He also mentioned there are a lot of late recurrences with the type I have. I am trying to hold out as long as I can on the AI, because there is now also talk that some of us should continue past the 10 years and should extend to 15 years on something if possible, so when I have to finally go onto Tamoxifen, then hopefully I might be able to do that for a few years also.
Let's hope the information on extended AI treatment comes out soon, so we have an idea if we are doing this extra time for some benefit, or if we are putting ourselves through many years of misery for no gain.
Ched
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aussieched - I have the same path report with left side too. I just started year 9 and have had to get several Zometa infusions over the years due to osteopenia. I've had my joint pain and stiffness issues but am tolerating it well. An Aleve now and then helps. I have concerns going off medication at year 10 being 100% ER+, PR+ and 1 positive node. I wouldn't be happy taking Tamoxifen as I tried it early on and had issues with it. Other concern is that so many women eventually develop resistance to these treatments.
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Aussieched and cp418, my path report is very similar. I had the BCI test and it did show benefit of continuing AIs. I see way too many women with our pathology who go to mets at 10-15 years. I have few symptoms just stiffness and joint pain. I am 60 and stay in great shape so I hope that I can continue two more years. I am at 8 years now.
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I've seen several of you talk about "women with our pathology". Are you referring to ER+, grade 1, oncotype score, ER %? My MO has said she isn't recommending 10 years because the studies right now don't show it's a benefit. I know I'm a long way off from worrying about ten years but I'm curious if it's in my future
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I'm a 100% ER/PR+, had one positive node, and a Grade 3 tumor. My onc was fine with me going off AIs after 5 years. That was two years ago in July. I posted in this thread back in March, before my last annual visit in July. My onc and I discussed it again at length, and she said that the studies still aren't showing the same kind of benefit of 10 years on an AI that they showed for tamox. Based on that, 5 years on AIs is still the recommendation. She said that since AIs are much stronger drugs, it stands to reason that there might not be additional benefits to longer dosage. We agreed that if the studies showed any definitive benefits, I could always go back on it.
As I wrote to another member in a PM a few days ago, I'm quite comfortable with my decision to go off AIs - I think had I wanted to stay on them my onc would have had no problems renewing the scrip since the studies aren't totally settled, but my QOL was really being affected and I wanted off. I was having a lot of s/e, including weight gain, high cholesterol, joint aches, and bone density decrease. I had not yet gotten to full blown osteoporosis, but was in osteopenia and heading downward. In my risk-benefit analysis, I not only considered cancer recurrence risk, but the risks from the other s/e as well (broken hips and vertebrae can certainly have a negative affect on QOL, as can a stroke, heart attack, diabetes, etc.which are associated with weight gain and high cholesterol levels). In my case, I felt my overall QOL and health were better going off AIs. I'm pleased to say I've lost some weight, I feel much more active, my cholesterol levels are back to normal, and most importantly, I have normal bone density again.
It's a tough decision to let go of the AIs, and I think it comes down to one of those "gut feeling" decisions. I did all my research and talked with my onc, and in the end it was my gut feeling it was OK to go off AIs. Not very scientific, but sometimes a gut feeling is all we have go on.
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Nats, I agree with the 'gut feeling'. Mine tells me to stay on. I think initially I had weight gain but over the last 2 years have dropped and kept off just under 40 lbs. Trying now to keep up with food and exercise to control blood glucose (diabetes) and cholesterol (not high but a little elevated). My bone density has not suffered and initial joint issues have disappeared so I'm okay with staying on the full 10.
It's all very individual between you, your MO and your gut!
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