How Many are doing 10 years on Aromatase Inhibitors
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Hopeful resistance is the problem with metastatic disease. It keeps building a resistance to the treatments so a different treatment is needed. Early stage is really a different disease than metastatic. Your oncologist should be able to explain it better.
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voraciousreader my MO told me that BCI test isn't recommended. She doesn't do them because she doesn't trust them. Since she has been practicing many more years then the BCI test had been on the market I think I rather trust her for now till the BCI had been out several more years.
But since you are stage I it makes sense your risk is so low.
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My last onc. check up--the MO filling in for my regular MO--told me that I would probably be on 10 years of AI because I'm high risk. Then he went on to say--"and perhaps longer", intimating that I could also, like some others who've posted, be on an AI for life. I'm resigned to it unless I wind up with terrible side effects over time. Or the baddie appears. Fingers crossed that neither happens.
Meanwhile, I'm off to hike with my dog and then have coffee with a friend. It's the daily joys that give life to, well, life
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Ched, I use the term "for life" rather loosely but that's the way it's shaping up; when I started, I was told 5 years minimum and most likely 10. Now I'm being told to count on 10 and possibly indefinitely. There are several reasons:
We know that I'm a very strong responder to AIs, since I took Femara neoadjuvantly.
Chemo offered minimal benefit (1-3% probable reduction in risk of recurrence) and I had huge, truly overwhelming family needs at the time. My MO felt I could probably do o.k. w/out chemo as long as I committed to staying with AIs as long as needed.
There's increasing evidence that longer-term treatment with AIs is better than limiting use to 5 years or even 10 years.
I'm at somewhat increased risk for recurrence, due to genetic issues
Really, the only SE I have from Femara is a lower metabolism, which DOES drive me nuts admittedly, but as long as that's the worst of it, I don't mind staying on it and would be afraid/terrified to go off. Now, if 5 or 8 years down the road the research shows that it's safe to go off of it, or if by some miracle another drug comes along that works better and doesn't cost a fortune, we'll certainly revisit the issue. In the meantime, she's told me that we can discuss 'medication breaks' if ever needed but, again, I'd have to be pretty desperate to go that route.
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the resistance is due to the breast cancer cells mutating
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lago, I pestered my MO for the last few years. He was less than enthusiastic about the test. This time, I hadn't bothered to bring up the test. Of course, now, HE brings it up! I was surprised!
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Hopefull where did you get the information that states
"There's increasing evidence that longer-term treatment with AIs is better than limiting use to 5 years or even 10 years."
My MO says nothing has been released regarding more than 5 years on AIs yet.Interesting voraciousreader
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lago - check out this link previously posted above. It contains details of ongoing studies for extended AI treatment. The current guideline is from 2014 and there are patients who are in/past that timeline for 8-10 year treatment.
https://www.researchgate.net/post/How_long_after_b...
I'm going off topic but what I feel is critical for patients taking AI medication - is the prevention of bone loss at the start of their treatment. Back when Zometa was in the news for "possibly" preventing bone mets - a patient was not allowed access to this medication without a dx of osteopenia. This was dictated by the Insurance companies - I don't know if it changed from 8 years ago. Recently with the approval of Prolia (which is a bone drug but is NOT a bisphoshonate) these medications should be allowed for BC patients even prior to development of bone issues. For what it's worth, I seem to be responding to Prolia better than my 8 previous Zometa infusions. Besides as an injection it is far easier than IV and I don't seem to have to the post bone pain issues. If I could continue to get Prolia for my bone health then I might be able to tolerate letrozole for 10+ years.
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Iago, that link from cp418 is one of the more succinct discussions I've seen of the issue. I'm sure that there will be a lot more released before I hit the 5-year mark, let alone the 10 year. In the meantime, my MO knows that I'm interested in the research and we discuss it regularly.0
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My MO in her gut believes that 10 years will be better but states there is no evidence yet. Since this could change I could go back on the AI in the future. As far as BCI test she said it is not recommended.
Dr. Susan Love posted on her facebook page about the "liquid" Cancer test (alternative to biopsies). I feel it applies to the BCI test too:
"While this technology is very promising, there are several caveats. First it is not a liquid biopsy but a blood test! 2. We do not yet know that the cells and DNA that are found floating in the blood are representative of the cells that successfully arrive at other organs to become metastasis. They may be the rejects, or be able to get out of tumor but not successfully get into another organ! Sometimes the hype for new technology extends beyond what we really know! Cautious optimism that this will help!"
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https://www.washingtonpost.com/news/to-your-health...
I'll be finishing 10 (6 months Tamoxifen, 9.5 years Femara (Letrozole). I saw my oncologist for my annual well baby check and she told me that the 10 year study was about to hit, and here it is
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Pretty much the same as what the ten year Tamoxifen studies showed....fewer recurrences especially in higher risk patients, but little difference SO FAR in survival. ER + tumors usually recur late, so that is good news, but over all, it is going to take decades longer to see if it improves survival. Regarding protection of the other breast, as I stated in an earlier response, my doctor believed in my situation, I was less likely to recur, however, he thought taking endocrine therapy was doing more to protect my other breast. Clearly, he was proven correct.
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Not sure my MO will put me back on it due to my bone issues. (Been off Exemestane for exactly a month now.)
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FYI the FREE full text article is available for reading here.
http://www.nejm.org/doi/full/10.1056/NEJMoa1604700#t=articleResults
I was age 66 when I started taking an AI, I'm 72 now. At my age I could care less about the prevention of contra lateral breast cancer in coming years, with a positive node it was the possibility of distant progression that concerned me more. I had osteoporosis at the start.
Kathy0 -
I am on the 10 year to life plan. I started in April. I Iam VERY high risk and 99% ER+. So far, no side effects that are unmanageable, but I start Prolia next month due to osteopenia at 35.
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Haven't been on this thread in ages. Glad to see that it is still an active discussion. Hi LAGO! I've been on AI for almost 6 years now. My MO is adamant about sticking with it for 10 years. I am considering compromising at 8 years depending on how I am feeling at that time. The side effects from generic letrozole are NO fun for sure... stiffness, hair thinning, weight gain. I have been working with my local pharmacist at experimenting with different drug manufacturers. I recently switched to Roxane's letrozole and so far things have been far better. Hope it stays that way.
I was diagnosed with osteoporosis a few years ago and have been getting Zometa infustion every 6 months since then. My last DEXA was much improved. I will have another DEXA next March. If that shows more improvement, then I can stop the Zometa. Last fall, I developed two torn meniscus in my knee and also diagnosed with bone on bone arthritis in that knee. So, that led to a larthroscopic knee surgery. Uggh!!!
And my MO here in AZ says that I must keep seeing her every six months while I am on letrozole. I really don't mind as she is quite vigilant with exams, blood work, etc. Between her, my PCP and my GYN, I guess my follow up is almost over kill!
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The American Oncology conference just released the study for staying on AIs 10 years and it did show as beneficial. I did 8.5 years and now will go back on for another 1.5 years.
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Hormone Therapy: 10 Years of Anti-Estrogen Reduces Breast Cancer Recurrence, Research Says
Extending the use of letrozole for 10 years in post-menopausal women can also help prevent cancer in a healthy breast, said a study presented at the American Society of Clinical Oncology on Sunday.0 -
Yes, my oncologist in Chicago took me off Exemestane at 7 years, but when I moved to California , my new onc put me back on it! She also wanted 10 years!! I just finished my 10 1/2 year stint!! I am done!! I think!😃
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Haven't been on in a while either. I have been waiting on the results of this clinical trial. My MO is one of the doctor's listed in the NEJM article. I had been asking him when they were going to release the results and I am glad they finally have. My MO let me stay on letrozole for 10 years. I take my last pill in August of this year. I have an apt around the same time and will ask him if I can stay on until 15 but doubt he will let me. Constantine on researchgate mentioned taking some type of hormone therapy for 15 years if high risk. I consider myself high risk with a positive lymph node. Anyway, if I have to go off Femara in August, I am okay with it because I feel that I have done everything I could to keep the cancer from coming back. It's a bummer that we hormone positive bc ladies have a lifetime recurrence risk but we also have a lot of treatment options so I'm not complaining. Anyway, glad to see some of the old timers return to comment on the news.
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Aug242007
Thanks for posting the new information from the American Society of Clinical Oncology re benefit of 10 years of AI. Makes it a little easier to pop the pill each day knowing that it may be helping, especially when some of us are suffering from all the side affects of it.
Kindergarten
I notice that you had 28 nodes taken out, I often looks at people's stats and find it hard to find a lot of women having had so many nodes taken out as I have. When I asked the surgeon why he had taken so many out, he said "because they were there". Have you suffered from lymphedema. I have had terrible ongoing problems with lymphedema and have also been diagnosed with lymphangioma circumscriptum which I have been told is very rare, and all the doctors I have been to in Australia, have never seen it before. They say it has been caused by the number of lymph glands taken, plus having the radiation.
Ched
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Haven't been on in a while either. I have been waiting on the results of this clinical trial. My MO is one of the doctor's listed in the NEJM article. I had been asking him when they were going to release the results and I am glad they finally have. My MO let me stay on letrozole for 10 years. I take my last pill in August of this year. I have an apt around the same time and will ask him if I can stay on until 15 but doubt he will let me. Constantine on researchgate mentioned taking some type of hormone therapy for 15 years if high risk. I consider myself high risk with a positive lymph node. Anyway, if I have to go off Femara in August, I am okay with it because I feel that I have done everything I could to keep the cancer from coming back. It's a bummer that we hormone positive bc ladies have a lifetime recurrence risk but we also have a lot of treatment options so I'm not complaining. Anyway, glad to see some of the old timers return to comment on the news.
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Hi Joan! Miss you in Chicago
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So, I guess it's good news, bad news. Ha! Good news AI's still help & bad news is we have to continue with negative side effects. I'm sure my MO will have me on Arimidex another 5 years when I see her August 1st. At least now I am a 5 year survivor!!! Praise God
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Well I was pretty much expecting that news. Now will we hear 15!
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I also was told I was on the 10 year minimum plan for Letrozole. I'll be thrilled if I live that long. I would love to see what the new normal feels like off of the AI if I am lucky enough to get to that point! I also suspect we may hear 15 by then. Once my kids are grown though, I will consider quality of life to be as important as quantity. For now however, I tolerate it (and Prolia) ok
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Yes Kbeee. I wondered if I would be a lifer. I have felt it too presumptuous to ask. I might just love to do 15 with some achiness as opposed to the alternative.
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http://www.bbc.com/news/uk-36455719
Breast cancer: Taking hormonal drugs for up to 15 years can reduce risk - study
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Is anyone here watching for the results from the SOLE trial in the UK? It was mentioned here on a different thread. It is testing to compare continuous dosing vs. intermittent dosing for Letrozole. The intermittent dosing is 9 months on, 3 months off. The hypothesis is that the intermittent dosing is not just equivalent but may be better because it will lessen resistence. The trial started in 2007. No results released yet. I am thinking that 10+ years is more acceptable if every year has a 3 month break.
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Love the idea of a 3 month break but wonder, for those who had miserable SE's which they got used to, will taking a break bring back the SE's when starting up the next 9-month stint? I understand the thought about building up a resistance but there may be other issues with taking a break?
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