How Many are doing 10 years on Aromatase Inhibitors
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Hi, ladies,
I'm another one who isn't on BC.org very often anymore, but came back on due to this stupid 5 or 10 year situation. I was on femara for 5 years. Onc wasn't sure what he thought would be best for me so kind of left the decision up to me. Yeah, thanks....
I was only slightly ER positive (I think 10 or 12 percent) but my original onc who has since retired, made it seem like even if the Herceptin got all the HER2+ cells, the ER+ cells could still be hiding away and show up as a late recurrence. Ugh.
I quit the femara a few months ago because I was sick of the side effects--achy joints and osteopenia gradually was worsening, but now I'm second-guessing my decision.
Any words of wisdom?
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lago! Carafate! Great!!!! The liquid, though pricy, is worth every penny! Tablets? Not as good, but STILL good. Recommend it to family and friends
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This is an interesting discussion, and it lists some of the studies that are ongoing. https://www.researchgate.net/post/How_long_after_being_disease-free_from_breast_cancer_is_it_safe_to_stop_letrozole_Femara.
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OMG, it basically says 15 years is better than 10 or 5! How many of us can endure taking it for that long?
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voraciousreader Carafate Suspension is the liquid. Never took the pills
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No way, no how, not happening! 5 years and I'm quitting! Assuming I even make it that far.
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lago! I know the suspension is the liquid form! I always recommend it over the tablets! One of my close friends started taking it a few weeks ago and the relief came almost IMMEDIATELY! The DH and DD have been taking it for years. The DH takes the liquid and the DD takes the tablets. Although the tablets are usually prescribed one tablet 4 times a day, the DD's physician permits her to take up to 8 tablets a day. She suffers from bile reflux.
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My reflux resolved after 3+ months of suffering almost instantly. I had to use it again on Chemo but I don't need it anymore. I control with diet and reduce stress.
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posting to lurk along.
like others, I'm HER2+ and minimally ER+. Just started the Zoladex shots and Letrozole (femara) in February; already feeling it. Talked w/ PA other day - for now I can handle the hot flashes, the joint aches. My issue is that w/ estrogen leaving the building it's sent my metabolism on an endless vacation. Now my appetite is back, craving sugar like crazy but energy is down. no matter the diet and exercise, I keep gaining weight. Not sure how these SE will build, hoping it's only 5 and not 10 years of this. FWIW.
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Hi - I've been on Arimedex one year, and like Imisswine, above, I've tolerated the hot flashes and joint aches (or at least I stayed on the drug) because I'm a good girl who takes her meds. The past two months the joint aches have become a new beast and I can't do it. So I did what I tell others to do and asked MO for Arimedex vacation for 3 weeks until my next appointment. Can anyone tell me what you experienced if you did this? Day 4 and I know my knees aren't waking me in middle of night, hot flashes,still, and nauseau. Thanks to all my fellow guinea pigs on this thread.❤️✌️ Lindaa
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BookLady1 I was on Anastrozole (Arimidex) for 3 years. I have a high tolerance for pain but it got to the point that I couldn't even stand up straight. Everyone kept saying I lost an inch in height. I took the break like you and when I visited my oncologist she switched me to Exemestane. Did much better for 2 years. Physical pains almost gone and I got my inch back!
I just finished my 5 years on AIs last Tuesday. My MO initially wanted me to do the full 10 but the osteoporosis issue concerned her due to the fact I walked in with a boot due to a stress fracture in my foot. I'm on Prolia and she said I shouldn't be getting stress fractures when on Prolia. I was just walking when this happened.
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Iago - thank you for your quick reply! I've noticed you being so helpful all over these threads! I have osteoporosis in spine that has worsened this past year so start Zoledronic Acid tomorrow. Fingers crossed.
Hate you are suffering with stress fracture - hoping that's your last one. LINDA
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I've been on Anastrozole for 13 months now. Overall I'd say the side effects haven't been too bad. Stiffness in my hips and legs when I get up from sitting is the main issue. It seems to be worse on the days I exercise. Crazy...everyone says to exercise, exercise, exercise...because it helps. It makes it worse for me. I also seem to be more fatigued and started gaining weight in the last 4-5 months. Even though I've been luckier than most...I still can't imagine doing this another 8 1/2 years.
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Mommato3 - I had the same "luck" as you with Arimidex regarding side effects until they blew up over 2 months ago. Exercise made my joint pain worse, too. Same with fatigue and weight gain, etc. This is so tricky and infuriating.
I've been on a MO prescribed vacation from the drug for over two weeks and feel better than I have in a year. See MO Tuesday and want the cold, hard facts. I totally understand why others choose quality of life over the Aromatase Inhibitors. I will accept trying another drug and hoping for a reprieve from the collateral damage!
Had my Reclast last infusion last week - more hoping, that my osteoporosis doesn't worsen.
Tonight, hoping for no more thunderstorms so my sweet Beau Airedale doesn't wake me by panting in my face in the middle of my sleep! A peaceful Sunday for all of you. ✌🏼❤️ Linda
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I am still coming off the 9 years of Arimidex. Still glad that I extended the therapy. I believe that for some of us extending is the best idea. I just wish that there was more research for extending therapy and the benefit. Good luck to all!
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Aug24 - yes, research, research, research! ! I will pass on anything I learn from my MO after Tuesday. ✌️❤️ Lind
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BookLady - I was on Femara for 5 years, with every s/e in the book. With my onc's permission I took 4 separate 1-month "vacations" from Femara during that time. Like you, I found that the s/e eased almost immediately, but you may be heartened to know that once I went back on Femara, it took several weeks for the s/e to fully return. The relief I got from those "vacations" was the only thing that got me through my 5 years.
After consultation with my onc, and given the dearth of studies indicating benefit to extending AIs beyond 5 years for someone like me, I did not extend a single day after my 5 years were up. That was 3 years ago, and so far so good. After feeling like I was 85 years old while on Femara, it's kind of nice to just have the aches and pains of a normal 60 year old!
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I am wondering if with more studies they will ultimatlwy have people with ILC take it longer as ILC typically reoccurs later?
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I was advised by my 2nd oncologist to take Letrozole for minimum 8 years if I could tolerate it. I am now starting year 10 Letrozole and have tolerated the side effects. I do have osteopenia and was previously treated with Zometa and now Prolia which I much prefer. I was 100% ER+ and PR+, Her2neg, grade 2, 1/18 nodes positive. Compared to when I had Lyme disease symtoms I find the Letrozole is easy. My tumor was deep against chest wall and only found on routine mammogram. I was age 49 at dx and premenopause. I initially tried Tamoxifen and had problems with it. So I requested (demanded) an ooph so I could take an AI. This was 10 years ago when the mammoprint and other screening tests were not allowed for node positive patients. I feel there is no point in looking back - I did the chemo and radiation treatments after my lumpectomy. If my oncologist thinks I may benefit from a few extra years - I will seriously consider it.
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Dear cp418, again thanks for your post. You and I are similar in dx and I did almost 9 years of Arimidex. Thanks again. Love your posts.
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I just posted this on another link. Consider that some of us may become resistant to these AIs after taking them for a longer period of time, damn it. Seems like there's a gene mutation that contributes to this resistance in some.
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Chloe'smom, at my last oncologist check up I was told I'd be on Aromasin for most likely 10 years or perhaps even life. Because 1) I'm high risk and 2) have ILC which does, as you noted, tend to recur later, every time I see my MO I ask about "how long" for this drug and she ups the length of time. I'm resigned, provided I don't have a stupid gene that might contribute to resistance (see above), that I'll be on something the rest of my life, I guess. I hope they develop a drug that causes less side effects and more protection between now and when I die.
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Claire, thanks for that link. I, too, am on Femara for life (in both senses). The possibility, however, of becoming resistant does concern me, especially as I don't see much in the pipeline in the way of alternate therapies.0
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This should make the link live.
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It is very frustrating wondering if these drugs give us benefit long term. Those of us who are 5+ years out - we are the pioneers (or the human lab rats (no offense intended!) who are the first patients taking these drugs for extended treatment. We represent those patients written in the published research articles - we are living it. Some of us suffer worse side effects and stop while others tolerate and continue on. I always believed my having a positive node made me higher risk or maybe the Ki67 score of 20 and grade 2. Whatever the reason - I was treated aggressively when I was initially dx. I really feel like my onc simply tries to give me the best answer considering the current lack of information. I figure at age 59, I'm still at risk for a later recurrence - so I try to eat healthy, exercise, take some recommended supplements - and hope I can remain NED.
Regarding drug resistance - that situation always concerns me too. At the time BZA was acquired by Pfizer, I was hoping it might be used for those resistant patients. If I recall this drug destroyed ER receptor sites but maybe I am ignorant in understanding this mechanism.
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Regarding the article/study it's talking about metastatic resistance not early stage.
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True, Iago, and that's a good point. My concern is that resistance develops and thus allows metastasis to develop, which isn't the point of this research. Still, I chalk it up to a better understanding of the disease process overall and consider it both helpful and rather fascinating.0
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Hi Hopeful
If you don't mind me asking, can you advise why your oncologist wants you on Femara for life?
thanks Ched
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Went to MO a few weeks ago and did the BCI test. MO called yesterday with results. He told me I had a 2.5% chance of recurrence in 10 years if I don't continue taking the AI. He said if I do continue , my chances drop to 1.25 chance of recurrence. I told him that I was surprised by the BCI number because it aligned with the cancer math.net number which predicted my 15 year chance of recurrence. Surprisingly, he never heard of cancer math.net!!!🤔 He then told me he was going to check out the website and crunch my stats. Suffice, since I'm in year 6 of endocrine therapy, he wanted me to take some time and decide whether I wanted to continue the AI. Once I'm ready to decide, he wants to see me. Hmmmm....
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