How Many are doing 10 years on Aromatase Inhibitors
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mary625 I am on Arimidex, I'm not sure what the difference is, but my MO suggested stopping after 10 years. That's 3 years from now, so she could change her mind. Kind of disturbing there aren't enough women to do a study after 10 years? Why is that??
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Agree with HomeMom. It's downright scary to think that there aren't enough women beyond 10 years to do a study. Is this info really correct?
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I was on Tamoxin for 14 years and was asked to stop and 3 years later have mets.. I wish I had continued it, but that is my case.
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The first aromatase inhibitor was introduced to the market in 1994. That's just 28 years ago. It has been a game-changer for post-menopausal women with ER+ breast cancer; significantly decreasing recurrence and death as a result.
Like all new drugs, it takes time (a lot of it) and money (a lot of it) for research to understand its effects on the human body and compile reliable statistics about them. At first, recommendations were for a 5-year period of drug therapy after initial diagnosis. As time went on, research revealed there was a benefit for some people to extend their therapy to 10 years.
And that's where we are today. The drug simply hasn't been around long enough to know precisely what happens for those who take it longer than 10 years.
Mary625, I'm in almost exactly the same boat. I'll be at 10 years this coming July. I think my oncologist wants me to discontinue it, but I'm doing pretty well and have conflicted feelings. I'm borderline osteopenic but I'm taking a bisphosphonate that's helping. My lady bits think they're 100 years old, but I've learned to manage the symptoms. I would rather stay on letrozole than discover a recurrence down the line. And my cancer was pretty high risk.
Where's that crystal ball? Can you buy one on Amazon?
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I’ve berntaking Arimidex and getting Prolia injections for 5 years. After getting the results from the Breast Cancer Index - yes continue endocrine therapy along with high risk, I'll be staying on Arimidex for 5 more years. If you find that crystal ball let us know.
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I am on the ten year plan. I have 18 more months to go and I wonder what's next. I have tolerated Letrozole well. I am very unhappy with the rapid aging and I am always soooo tired but that likely is unrelated. If given the choice I would like to continue. The drug gives me peace of mind.
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notbrokejustbent - It's tough spot to be in. Love hate thing with this drug, yet the day will most likely come when you have to stop taking it and with that goes the peace of mind. But is it really what is keeping us disease free? I think I'm going to work on what I put in my body while making sure I keep myself physically healthy by exercising. Maybe it is all we can do
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Hi There My onc told me today that I can end my AI treatment. I was on Luporn and Tamoxifin for 2.5 years then dropped the Lupron and switched to Anastrozole. I am now at 7 years total. I am a little nervous about letting go of what feels like a life line to me. I am in great shape, and work out regularly. My bones have not been effected but I am always tired. Onc says I will get my energy back. He says that there are side effects the heart that I should think about. He also said that the risk of recurrence goes up 1% every year. Great so the older we get the higher chance of recurrence.
How did you feel after stopping treatment? Anyone out there? Thanks in advance
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I have one more year to go with my Letrozole. I think about going off all the time and it is scary. I feel I will have no protection then.
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I am in my ninth year of anastrozole. My MO wants me to complete ten years and then switch to tamoxifen or Evista.
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susanfca I'm at the same stage you are, diagnosed in 2014. I've been on Arimidex since Dec 2014. I feel the same way, it's like a safety net. I was going to go the 10 years after she said because of node involvement, it would be extra insurance to go the 10. Last appointment she said it is up to me, she doesn't want me to feel pressured. It has affected my bones and my weight has yo yo'd, but I have been pretty active exercising keeping it steady.
When I go get my bone scan next spring, we'll see if it is still affecting the bones - I get a Prolia shot every 6 months too.
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My doc told me that after the BCI results I can stop letrozole but I’m too scared to stop. What should I do? The thought of doing nothing to protect myself puts me in a panic si I’m still taking it. It’s about six years now.
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Thanks, @mudd, for bumping this important discussion! We understand how scary it can be to think about stopping treatment. Hope some of our community members can help you with this. Please share your thoughts If you've been through a similar situation or have knowledge about this!
Best,
The Mods
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Hi Mudd, have you looked at a copy of your BCI results to give you the percentages of recurrence? The results vary from low to high recurrence but also state whether you would benefit from extending beyond 5 years. I have read that only about 5% of people benefit from taking the meds beyond 5 years (of people who qualify for the BCI test).
My results came back with a high chance of late recurrence and a benefit from continuing the AI. I took the meds for a little over 8 years until I was diagnosed with osteoporosis a couple of months ago. It is scary since I should be going another two years but you also have to weigh the benefit vs. side effects. I tolerated the meds but felt much better when I took a break from them. Since I have quit, I have more energy, I was able to go off of one of my blood pressure meds, and my mood has lifted. However, I am still thinking of going back at some point along with the Prolia shot to protect my bones.
It is definitely a tough decision that only you can make based on what you are comfortable with. Many women here have said to try and think about what you would regret with what you decide. Good luck and let us know what you decide.
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I am completing my ten years on Anastrozole in two months and will stop taking it. Over the past year, my oncologist mentioned a few options including switching to tamoxifen, starting evista or doing nothing. Obviously that assumes my labs still look good in two months.
Anyone here who reached the ten year milestone? What are you doing if anything?
Have you seen any relevant stats? I stopped following or visiting these boards a while back.
Happy New Year to all!
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I will stop taking Arimidex on December 20, 2024 (ten years). It looks like we took this journey around the same time. My Dr said "You'll go off this on December 20th and there will be no tapering off". I have osteopenia in my lower back. My next Deca scan isn't for almost two years, so I am going to go back in the spring of 2025 to get a prolia shot only, then get my deca scan in the summer to see if going off of the Arimidex has helped.
She told me at 5 years the longer the better, but there is no evidence it helps after 10 years. I plan to get serious about a more alkaline diet and I MIGHT stop drinking - does red wine count? LOL😎
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Hi Everyone,
My sister was diagnosed with ILC stage 2A. She had double mastectomy in January. Her Cancer is 100% estrogen positive, 70% PR positive, HER 2 negative. Her tumor was 4.2cm . They took out 2 lymph nodes during surgery & one came back positive.Her Oncotype DX score was 20 and she is post menopausal. Her doctor said she won't benefit much from chemo so she decided not to do chemo. She met with radiation oncologist regarding radiation therapy & radiation oncologist said radiation therapy will only decrease her risk of reoccurrence by 10%. She is trying to decide if she wants to do radiation therapy. Anyone been in a similar situation? Any advice that might help? She also met with a breast cancer oncologist that has more ILC experience for second opinion & she recommended combo of AI and cdk 4 6 inhibitor. Anyone with ILC on that combo ? Appreciate your comments
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I didn't have ILC, but I believe in doing everything you can to prevent recurrence. Even at 10%, that is 10% greater chance of not having to face this again.
I've been on AI for almost 10 years because it decreases chance of recurrence by 30%. I didn't want to, but here I am and plan to go off of it in December this year.
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Yes. I couldn't agree more. We need to do everything we can to prevent reoccurrence. Good luck on coming off AI. Hope it would be a smooth transition 🙏 did you experience any major side effects on anastrozole?
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In the begining I remember having stiff ankles when I would get up out of bed. It would take several steps to work it out, but it would go away. I have had issues losing weight when I gain weight, and some hair thinning.
I've been fortunate to not have anything I would consider excessive like some I've seen post here.
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That's great to hear. Hopefully my sister won't have major side effects as well. She is pharmacist but not a huge fan of taking medications ( ironically enough)
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