@cashemire Which days do you take it? I'm doing half pill daily right now (only two weeks in) and I'm curious about your schedule. Have you told your oncologist?
I take it Mon, Wed, Fri, Sat, 4 times a week instead of every other day so easy to remember what day.
Yes, I have mentioned this to my oncologist who doesn't admonish me, but probably not happy about flouting the recommended dosing.
Careful that halving a pill not always good unless there is a demarcation line on the pill, from what I understand.
Has your oncologist advised taking it everyother day ?
I'm asking as I asked this question to my oncologist as I had awful side effects.
I was told if you do not take every day the medication will not work & I'd be at high risk of a recurrance. I only thought it would stop the side effects & not affect cause the medication not to work.
Please ask your oncologist get a 2nd opion too if it's not clear. I went to 3 oncologists & asked a mass of questions. Good luck
@brightside21
To say that it won’t work makes no sense. It has a 50 hour half-life. Sometimes I think that people in the medical profession think we’re naïve. I’m considering going every other day myself. I have over 30 side effects. I’ve been taking it over four years. I am more likely at my age of 79to die from a Cardiac event or a stroke or getting a brain bleed from falling.
I take it Mon, Wed, Fri, Sat, 4 times a week instead of every other day so easy to remember what day.
Yes, I have mentioned this to my oncologist who doesn't admonish me, but probably not happy about flouting the recommended dosing.
Careful that halving a pill not always good unless there is a demarcation line on the pill, from what I understand.
@cashemire I do too. I take it every other day. My oncologist is happy that I did not give up as I had severe side effects and tried the other formulations too (like Letrozole). She felt that if this worked for me and that I could do this schedule for 5+ years then she was fine with it.
@cashemire I do too. I take it every other day. My oncologist is happy that I did not give up as I had severe side effects and tried the other formulations too (like Letrozole). She felt that if this worked for me and that I could do this schedule for 5+ years then she was fine with it.
@ecwilmot Thank you so much for sharing. I just started and taking half a pill daily right now, but thinking of taking one pill every other day. It's still less than recommended, but fewer side effects, so I'm okay so far. I had terrible side effects with the other two. Gentle is best for me.
@cashemire I do too. I take it every other day. My oncologist is happy that I did not give up as I had severe side effects and tried the other formulations too (like Letrozole). She felt that if this worked for me and that I could do this schedule for 5+ years then she was fine with it.
@ecwilmot
I’m taking letrozole, now in 7th month pre/lumpectomy surgery in March. But the tiredness is getting to me, along with overall fatigue and anxiety knowing this is going to be a long time (5-10 years post surgery). Further, I have had this breast lump over two years but was told “nothing to worry about”—until it WAS . So angry with the medical staff I went to during all this as it was not diagnosed until I saw a gynecologist who pursued the lump then my life was in a tailspin with numerous tests and biopsies. Was told “mastectomy” but switched to oncologist who said I could take the letrozole 6-9 months then have lumpectomy. Now being told if pathology report requires more “removal “, it could still result in a mastectomy. So I am continuing to take the letrozole until 9 month mark in hopes tumor will continue to shrink and lumpectomy will suffice. I’m going to be hugely disappointed if it becomes a more aggressive surgery and an ensuing mastectomy is needed. Anyone else have similar experience? And any side effects from the letrozole? Dreading the thought of having to take it for several years… Maybe the every-other-day would help (?) and will be asking about that—or just taking my chances w/o any drugs since I’m turning 79 soon.
My take on the AI side effects situation is that one should **first** find out one's risk of recurrence, before making a decision to stop them or even not to start them. Your medical oncologist should be able to tell you your risk or order a test of your tumor to find out (e.g. Oncotype test). Also, you should try all 3 AIs, because there may be one you can tolerate. I tried Letrozole and exemestane, got some side effects, tried Anastrozole--no side effects.
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Thanks. I'll be looking up research on Tamoxifen.
@cashemire Which days do you take it? I'm doing half pill daily right now (only two weeks in) and I'm curious about your schedule. Have you told your oncologist?
I take it Mon, Wed, Fri, Sat, 4 times a week instead of every other day so easy to remember what day.
Yes, I have mentioned this to my oncologist who doesn't admonish me, but probably not happy about flouting the recommended dosing.
Careful that halving a pill not always good unless there is a demarcation line on the pill, from what I understand.
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2 Reactions@brightside21
To say that it won’t work makes no sense. It has a 50 hour half-life. Sometimes I think that people in the medical profession think we’re naïve. I’m considering going every other day myself. I have over 30 side effects. I’ve been taking it over four years. I am more likely at my age of 79to die from a Cardiac event or a stroke or getting a brain bleed from falling.
I take it every day!! I’m a crabb! I hate having to take t for so long.
@cashemire I do too. I take it every other day. My oncologist is happy that I did not give up as I had severe side effects and tried the other formulations too (like Letrozole). She felt that if this worked for me and that I could do this schedule for 5+ years then she was fine with it.
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3 Reactions@ecwilmot Thank you so much for sharing. I just started and taking half a pill daily right now, but thinking of taking one pill every other day. It's still less than recommended, but fewer side effects, so I'm okay so far. I had terrible side effects with the other two. Gentle is best for me.
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1 Reaction@ecwilmot
I’m taking letrozole, now in 7th month pre/lumpectomy surgery in March. But the tiredness is getting to me, along with overall fatigue and anxiety knowing this is going to be a long time (5-10 years post surgery). Further, I have had this breast lump over two years but was told “nothing to worry about”—until it WAS . So angry with the medical staff I went to during all this as it was not diagnosed until I saw a gynecologist who pursued the lump then my life was in a tailspin with numerous tests and biopsies. Was told “mastectomy” but switched to oncologist who said I could take the letrozole 6-9 months then have lumpectomy. Now being told if pathology report requires more “removal “, it could still result in a mastectomy. So I am continuing to take the letrozole until 9 month mark in hopes tumor will continue to shrink and lumpectomy will suffice. I’m going to be hugely disappointed if it becomes a more aggressive surgery and an ensuing mastectomy is needed. Anyone else have similar experience? And any side effects from the letrozole? Dreading the thought of having to take it for several years… Maybe the every-other-day would help (?) and will be asking about that—or just taking my chances w/o any drugs since I’m turning 79 soon.
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2 ReactionsMy take on the AI side effects situation is that one should **first** find out one's risk of recurrence, before making a decision to stop them or even not to start them. Your medical oncologist should be able to tell you your risk or order a test of your tumor to find out (e.g. Oncotype test). Also, you should try all 3 AIs, because there may be one you can tolerate. I tried Letrozole and exemestane, got some side effects, tried Anastrozole--no side effects.
Here's some scientific research on taking a lower dose of AIs, and on not taking them at all.
Alternative dosage aromatase inhibitors
Letrozole: https://pmc.ncbi.nlm.nih.gov/articles/PMC4740217/
Exemestane: https://pubmed.ncbi.nlm.nih.gov/36951827/
Tamoxifen: https://www.droracle.ai/articles/79964/what-are-the-options-for-low-dose-tamoxifen-tamoxifen-citrate
No studies for anastrozole that I could find. Also as best I can tell, they all report that estrogen is lowered, but they don’t address the question of whether the lower dose prevents recurrence as well.
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Taking anastrozole vs not taking it: https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(19)32955-1/fulltext
Tamoxifen vs placebo: https://www.nature.com/articles/s41416-023-02158-5
Refusing AIs: https://www.breastcancer.org/treatment/hormonal-therapy/refusing-hormone-therapy
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2 ReactionsSee my post below.