half dose of Femara
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My dad was a research biochemist, died nearly 40 years ago. He used to regularly comment on deficiencies of pharmaceutical knowledge among doctors. I wonder if this is still true. Why would a medical oncologist not be more current on the drugs they prescribe'?
My MO always seemed surprised when I mentioned side effects that I see are common on AIs, usually sending me to other specialists. On another thread I wrote: '
This past year I became aware of having lost my sense of smell and taste and in retrospect realize I had marked changes four years ago, and because of the coincidence of taking the medication I began looking into a link. My MO knew of none, but the other day I found this on the drugs.com site:
Nervous systemVery common (10% or more): Headache (18%), depression (13%), insomnia (10%)
Common (1% to 10%): Dizziness, anxiety, paresthesia, hypertonia, cerebrovascular event (cerebrovascular accident, cerebral ischemia, cerebral infarct), somnolence, confusion, nervousness, carpal tunnel syndrome, sensory disturbances (e.g., taste loss and taste perversion)[Ref]
https://www.drugs.com/sfx/anastrozole-side-effects.html'
I know oncologists treat other types of cancer besides breast cancer, but I am not encouraged when mine seemed so clueless. And I can't imagine that most of us sufferers haven't questioned the "one size fits all" dosage. It seems a simple enough concern that deserves an explanation.
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I know this discussion is about Femara, but I'd like to add a bit of info about exemestane dosing. The original research papers also showed that lower doses of exemestane were as effective as the prescribed 25mg. Also, the half life of 25mg was approximately 48hrs. I'm not surprised patients are having SEs, which may be toxicities, associated with the high doses. I'm barely 100lbs and have no qualms taking only half dose, sometimes 1/4 dose when there are SEs.
I think instead of prescribing 25mg every 48hr, it's easier for instructions to say every day. And the 25mg would cover every woman's body type. Personally, I think it borders malpractice prescribing a single high dose for every woman every day, especially when so many are plagued with SEs.
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I'm not seeing how Beesie's article would lead people to reduce dosage to improve QoL.
In my reading of the study, intermittent doses and doses down to 1/24th have the same effectiveness (based on what they tested for), and the same sucky side effects.
I love the idea of taking less of any drugs, but I don't see a benefit that equals the risk at this point in time. They perceive the SEs to be the same, and you are risking that there is an unmeasured impact at the higher dose.
I also can't see how intermittent dosage would help with compliance. I think it is easiest to remember to take meds daily.
I'd love to see the 5 yr and 10 yr impact of lower dosage with a larger group of participants! And I'd love to feel safe taking a lower dosage!
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Like Mortmain, I have also noticed over the years that doctors seem to know very little about pharmacology. I do realize they cannot know everything about all of this stuff (they're only human), but I would think that they would make an effort to learn about the pharmaceutical implications of the drugs they prescribe most and those related to their specialty areas. In the early 1990's I complained to a dr once about side effects I was having from steroid sprays for asthma and allergies. He was an ENT, but he told me that most of what he and his associates knew about drugs prescribed for allergies came from the drug salesmen. I was shocked. I had read all the symptoms I was having in one of the old inserts that they used to put in packages before the internet made look-ups easy. I told that dr that everything that was making me ill was described in the package insert and he said it didn't sound like anything the drug salesmen told him about, so he was wary about chalking my symptoms up to the drugs. I stopped the steroids and all the symptoms went away.
I also worked as a social work member of an interdisciplinary geriatric team that included a pharmacist, back in the 1980's and she always remarked about how little doctors know about pharmacology and that most pharmacists found it appalling. She added though, that the doctors had the final word on prescribed drugs, though, no matter how appropriate a pharmacist might think the drug might or might not be for a given patient. They always had to defer to the doctors even though they knew so much more about the prescriptions. I don't know if it is still like that, but it doesn't sound like it's a lot different.
Many of the side effects I have been experiencing throughout this cancer treatment have been dismissed by my oncologist as "not a common side effect" of the whatever drug I'm being given, e.g. chemo, letrozole. Not only does she seem to not be familiar with the drugs in general, she only seems to be concerned about "common" side effects. These AI's have numerous side effects, some more common than others. Some of the less common ones are the worst ones. For doctors not to be aware of or particularly concerned about the less common side effects could wreak some real havoc on some patients.
I want to continue to take the letrozole of 2.5 mg every other day, but I would like some official "blessing" that it would be OK and I don't think I'm going to get it - not from the doctor at least. I thought I might try and ask a pharmacist what they think/know the next time I get a refill, but they might not be able to say anything that would contradict what the doctor has said. Even at every other day, it sounds like I am still getting more than is necessary to produce good estrogen suppression. These high doses could well be the reason for so many bad side effects and the inability many women have trying to take them.
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OnTarget, I agree. It makes sense actually that if a lower dose is as effective as the 2.5mg dose, then the side effects will be pretty much the same.
The side effects from Femara/letrozole are for the most part not from the drug itself, but from the reduction in estrogen in our bodies. That's what makes our bones ache and weaken and our hair thin and.... These are normal things that happen as women age and estrogen levels drop, but on AIs we speed up and exaggerate this process. If women on a lower dose of letrozole have the same low estrogen levels as someone on the full dose, then logically the effects on the body, and the impact on QOL, will also be the same, despite taking a lower dosage of the drug.
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I too read in the study about side effects being the same regardless of dosing, so I understand what Beesie and OnTarget are saying. What I wonder though, is why estrogen levels aren't checked. It seems that if someone's estrogen level is low enough to experience side effects, dosage would matter. I assume that everyone's estrogen levels are different and that at any given time, mine is likely to be different than another cancer patient's. If I already have a low level of estrogen (just "naturally) and then I take the 2.5 mg every day, I can't help believing that my side effects would not be worse than someone else's because their natural baseline level is higher. I wonder if the side effects being similar at the various doses isn't due to everyone's natural or baseline levels being different in the first place. All that is out there seems to presume that we all start with the same estrogen levels and all take the same 2.5 mg every day. If someone has a low baseline level it would follow that most any dose would cause more pronounced side effects. Likewise, if someone's baseline estrogen level was higher, any dose might not drop that person's level to a place where they had intolerable side effects. The study suggests that the level of side effects encountered might be independent of the dose, but I'm just not so sure, since to my understanding no baseline estrogen levels are obtained, nor are they checked routinely throughout treatment and compared to the level of side effects experienced. Like OnTarget, I would like to see some 5 and 10 year studies with the alternate doses.
I hope I am making sense. I'm getting tired, as it is late and I can't tell if what I just wrote is what I actually mean. What does seem apparent is that there is a lot of missing information and apparently no real effort or concern about filling in the gaps. I'm still not convinced that dosage isn't the reason many cannot take this or quit taking it.
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I want to post a couple of things and then comment separately.
The company's own drug insert says that a dose of 0.5mg is 75-95% effective in lowering estrogen below detectable levels:
12.2 Pharmacodynamics
In postmenopausal patients with advanced breast cancer, daily doses of 0.1 mg to 5 mg Femara (letrozole) suppress plasma concentrations of estradiol, estrone, and estrone sulfate by 75% to 95% from baseline with maximal suppression achieved within two-three days. Suppression is dose-related, with doses of 0.5 mg and higher giving many values of estrone and estrone sulfate that were below the limit of detection in the assays. Estrogen suppression was maintained throughout treatment in all patients treated at 0.5 mg or higher.
Letrozole is highly specific in inhibiting aromatase activity. There is no impairment of adrenal steroidogenesis. No clinically-relevant changes were found in the plasma concentrations of cortisol, aldosterone, 11-deoxycortisol, 17-hydroxy-progesterone, ACTH or in plasma renin activity among postmenopausal patients treated with a daily dose of Femara 0.1 mg to 5 mg. The ACTH stimulation test performed after 6 and 12 weeks of treatment with daily doses of 0.1, 0.25, 0.5, 1, 2.5, and 5 mg did not indicate any attenuation of aldosterone or cortisol production. Glucocorticoid or mineralocorticoid supplementation is, therefore, not necessary.
No changes were noted in plasma concentrations of androgens (androstenedione and testosterone) among healthy postmenopausal women after 0.1, 0.5, and 2.5 mg single doses of Femara or in plasma concentrations of androstenedione among postmenopausal patients treated with daily doses of 0.1 mg to 5 mg. This indicates that the blockade of estrogen biosynthesis does not lead to accumulation of androgenic precursors. Plasma levels of LH and FSH were not affected by letrozole in patients, nor was thyroid function as evaluated by TSH levels, T3 uptake, and T4 levels.
And in the link that Beesie posted, a study showed tat a dose as low as 0.25 taken only MWF was also effective:
Abstract
Aromatase inhibitors (AIs) profoundly suppress estrogen levels in postmenopausal women and are effective in breast cancer prevention among high-risk postmenopausal women. Unfortunately, AI treatment is associated with undesirable side effects that limit patient acceptance for primary prevention of breast cancer. A double-blind, randomized trial was conducted to determine whether low and intermittent doses of letrozole can achieve effective estrogen suppression with a more favorable side effect profile. Overall, 112 postmenopausal women at increased risk for breast cancer were randomized to receive letrozole at 2.5 mg once daily (QD, standard dose arm), 2.5 mg every Monday, Wednesday, and Friday (Q-MWF), 1.0 mg Q-MWF or 0.25 mg Q-MWF for 24 weeks. Primary endpoint was suppression in serum estradiol levels at the end of letrozole intervention. Secondary endpoints included changes in serum estrone, testosterone, C-telopeptide (marker of bone resorption), lipid profile and quality of life measures (QoL) following treatment. Significant estrogen suppression was observed in all dose arms with an average of 75 – 78% and 86 – 93% reduction in serum estradiol and estrone levels, respectively. There were no differences among dose arms with respect to changes in C-telopeptide levels, lipid profile, adverse events (AEs) or QoL measures. We conclude that low and intermittent doses of letrozole are not inferior to standard dose in estrogen suppression and resulted in a similar side effect profile compared to standard dose. Further studies are needed to determine the feasibility of selecting an effective AI dosing schedule with better tolerability.
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So a few years ago my oncologist said it was okay to reduce my dose either by taking 1/2 pill or taking my Femara every other day, in order to "reduce side effects." To me, that made no sense clinically. Either a drug reduces estrogen levels below detectable levels, or it doesn't. If the much lower dose works, then the side effects caused by estrogen deprivation would logically be the same, right? (I would change doses for money reasons though. I have to pay for brand name because I react to fillers in the generic.)
To me, the real question is about what OTHER effects these meds have on our bodies, other than estrogen deprivation. Are there benefits to taking the full 2.5mg that relate to other effects of the drug than eliminating adrenal-sourced estrogen?
Are there benefits to taking a lower dose of 1.25 mg, 0.5 or even 0.25mg? Are there side effects related to some unknown effect on the body, including adrenal function, that could be improved somehow with a lower dose? The linked drug insert above does address some of these questions, including adrenal function and other hormones such as testosterone, which the drug insert claims are not affected. But we all know how mysterious the workings of our bodies are.
We really don't know what improvements we might feel with a lower dose, whether a 1/2 dose, alternating days, or even 0.25mg MWF. If all of our side effects are from estrogen deprivation, and if Femara ONLY affects adrenal estrogen production, then a dose change would not make any difference.
I do have trouble believing that these drugs are that narrowly targeting the body, but there is no research saying otherwise and studies cited by the drug insert would seem to eliminate a lot of the possibilities in terms of collateral damage, so to speak.
I wonder if the drug company makes more money with the larger dose? Does weight make a difference so that a heavier person needs more and the drug company therefore makes a one size fits all pill rather than spend on three doses? I have no idea. It is hard to understand why they made a pill for 2.5mg when lower doses work. is there a liability issue where overdoing is safer legally for the company? Do some people have natural estrogen levels that require a higher dose to work? Etc.
Another point, a little bit of a tangent: I am nervous about just stopping Femara cold turkey. Has anyone seen any studies on whether this results in a flood of estrogen? Do our bodies need time to adjust to changes in hormonal levels when we want to go off these meds? Just in case, I have started a taper. I will try to get down to the 0.25 MWF dose by my next oncology appointment and then ask how to further taper, since the study says that low a dose still reduces estrogen levels to near zero.
One oncologist told me I could go off two years and go back on for my last two years, for a total of 7 years. Another approach is to do 9 months on, 3 months off. I was told these drugs are preventative (prevent estrogen from feeding cancer cells), not treatment, so taking these breaks is okay. I would like to know more about this as well.
To people who are afraid of taking these medications, I hope you will try and not panic at the first sign of joint pain or whatever. I have found that exercising for 20 minutes hurts but if I keep going, I feel much better. I do tai chi and walk and 45 minutes of either really helps that particular side effect. After a few years, I think fatigue is hard, but then again, maybe I would have that anyway. I know several women who don't suffer much at all. I really hope that most women at least decide to try, but everyone can choose based on their own needs.
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Winding Shores - I really appreciate reading all of your comments and can relate to all of your observations and concerns. They are mostly mine also. Thanks too for posting the info from the drug insert. What you and Beesie have posted are a good deal of what I read, and I was hoping to post some of this info also, but this pill has created some sort of brain fog, cognitive disorganization, or something where I just cannot collect my thoughts enough to organize and post things in a rational manner. I've been taking this every other day now for about a week and one half, and the side effects have been both increasing and varying. One day my back hurts terribly, then it goes away and I get sleepy. Another day I get this terrible brain fog, low mood, and agitated feeling, then that goes away and I feel normal for a while and then my lower leg starts aching. All of this sort of thing has come on since I started taking this pill.
This issue with the side effects I'm experiencing is another one where it causes me to wonder about dosage and side effects. I understand the the available research suggests that side effects are not dose related, but given what I have been experiencing, I don't know if I would know if a lower dose altered my side effects or not. They vary so much within the dose range I'm taking now, I can't help but think that on a lower or higher dose I would not be able to distinguish whether my side effects were different due to the dose difference, or just the seemingly natural varying nature of the side effects themselves.
I have read on this site where some have reduced their doses and do feel that the side effects improved.
Side effects aside, I too wonder if there aren't other benefits to the lower doses, given that most all of them produce acceptably low estrogen levels. If we all could take half the standard dose, that would mean half of the dyes and fillers, etc. that are often responsible for some of the bad side effects. It would also mean lower cost for someone - either the patient and/or the insurance company. I too wonder if the drug companies just urged this to be set at 2.5 mg for profit reasons. I am far from being an active environmentalist, but I also do care very much about the environment and I understand that drugs of all kinds get into the water table, etc. and are causing all sorts of genetic mutations in fish and more. If everyone took less of this, it seems it would be better for the environment also. I just can't believe they approved this based on such a paucity of information and that no further studies, other than the original ones appear to have been done on any major scale. The original research was done in the late 1990's I believe, and nothing seems to have been revisited or updated in over 20 years.
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ThreeTree I know you are taking Femara every other day (and again, my oncologist said that was okay), but how long have you been on it ? Were you taking a full dose and went down, or are you just starting? There is no info at the end of your post so I can't tell.
I do think there is a period of time when the body is adjusting to the lower estrogen level, just as happens with menopause. In my experience, the side effects during that initial adjustment are different from the side effects a few years later, from longer term deprivation.
I expect side effects when I go off too, since it is an adjustment for the body, so that is why I am tapering.
Hope your doc okays the alternate day dosing! You can do what you want but it is always nice to get the doc on board and telling them what we are actually doing is what true compliance is
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Windingshores - I have been taking this since mid January. I had read of all of the terrible side effects and the comments by so many who were having an extremely difficult time, quit taking it, or refused to start all together due to what they had read, and was of course, very scared to try it myself. I did think I owed it to myself (and possibly the medical people) to at least give it a try, so I decided to start with the every other day dosing. I thought that if that worked out OK for about a month or two, I would then try the full dose. In the mean time, I read what I could find on the internet about the lower and alternative dosing. I don't know what to do at this point about taking more, because the side effects are so erratic. It's hard to pin down specifics about them so far. They are inconsistent and intensity and duration are all over the map.
I am encouraged to hear that your doctor told you at one time that an every other day dose would be OK. Mine did not think so, but she doesn't seem to really know much about it at all, but just goes by the FDA recommendation, period. She does not seem interested in anything but what the current FDA recommendation is.
I've read on these boards that some people's side effects did not appear for weeks, months, or years and that makes it hard to gauge side effects vs dosing also. Again, the side effects seem to be inconsistent and quite variable. Maybe related to how much estrogen we might have in our bodies at any given time?
Another benefit to lower and alternate doses would be the amount of drug that our kidneys and liver have to process.
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I appreciate the above discussion re: AI dosage and collateral side effects. And thank you for posting those abstracts. What has really hit home to me is that it is the decreased estrogen that is likely causing or at least accelerating most side effects: osteoporosis, arthritis, vision issues. As Beesie states: "The side effects from Femara/letrozole are for the most part not from the drug itself, but from the reduction in estrogen in our bodies." I don't know enough to link anything other than the AI to my loss of smell/taste.
But I take windingshores point:
"To me, the real question is about what OTHER effects these meds have on our bodies, other than estrogen deprivation. Are there benefits to taking the full 2.5mg that relate to other effects of the drug than eliminating adrenal-sourced estrogen?"
Perhaps it is simplistic to be astonished by the lack of hereditary links to these problems. While my family is small, none of my known forebears had breast cancer, osteoporosis, arthritis. My mom will be 90 this year and was only just diagnosed with osteopenia. Then ThreeTree makes the interesting point about differences in baseline estrogen levels by patient and wondering about future studies with this criterion considered.And while options for post-menopausal women are limited, there are differences in listed side effects for the three, leading me to believe that other systems besides estrogen suppression are affected. Thoughts?
ThreeTree, remind me, you have been experiencing side effects from your initial use of the AI in the past month? It's been so long ago for me, that I've forgotten but windingshore's statement "In my experience, the side effects during that initial adjustment are different from the side effects a few years later, from longer term deprivation." sounds right.
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Yes Mortmain, I have been having side effect during this initial month on the every other day dose.
I do think side effects are due to estrogen deprivation and it would make sense that longer term deprivation might produce more pronounced, severe, or even new and different side effects. What always seems to be missing here for me, is what I presume would be naturally varying levels of estrogen in all of us. My understanding is that exercise, diet, weight, and natural body make-up, i.e. genetics, all influence our estrogen levels. I can't help but think that the standard dose of these AI's could be too much for some, and maybe even not enough for others. I wonder if the extremely severe side effects that cause many to stop taking AI's altogether aren't due to the standard doses just being "too much" for some. I think the long term issue would be similar, i.e. the longer you take it, the more estrogen deprived you might become, and then you would experience possibly new and more severe side effects. Again though, it seems that lifestyle factors and genetic make-up would also influence this.
I continue to fail to understand why they do not seem to check estrogen levels before, during, and after AI treatment. My understanding is that an acceptable level of estrogen suppression is the goal, and if that is the true and sole goal of the treatment, estrogen levels should be the important marker, not whether or not the one size fits all standard dose is religiously complied with.
I work in a field that puts me in frequent contact with people who take psych meds, and I know that with many of those drugs, blood levels are checked routinely and doses are adjusted accordingly. If that is not done, severe and deadly side effects can often occur. I know that not all drugs work the same, and it is also my understanding that body weight is not necessarily a salient factor in the administration of all drugs (I know some on here question why a 300 pound man would be given the same standard dose of an AI as a 110 pound woman), but I can't help but wonder if AI's shouldn't be investigated further to see if routine estrogen blood level checks and respective dose level adjustments wouldn't help.
We all need at least some estrogen in our bodies in spite of the threat of cancer recurrence. I would think that an exceptionally low level or the elimination of estrogen altogether, might even cause death. When a substance in your body is causing the intolerable level of side effects that some people have described - to the point where they no longer feel they can take it, it is probably just too much and may be reaching an extremely dangerous and unacceptable level. I'm no expert, just my thoughts after reading and observing others' thoughts.
Interesting Mortmain, that you relate your loss of taste and smell possibly to the AI. Just this morning I had some cereal with soy milk on it and the soy milk tasted very strange. I couldn't tell if it was starting to go bad, or if it is one of these erratic side effects from letrozole.
Also, unlike you, I have had family members with breast cancer and arthritis - probably osteoporosis too, but unchecked/diagnosed. It is odd how genetic factors appear to be strongly associated with some, and not at all with others. Another real conundrum.
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Windingshores - was the oncologist who told you it would be OK to take an every other day dose an MD?
Also, I too would taper off like you are doing. I have often wondered about a "flooding" effect from going off drugs or supplements in general - other drugs and other situations. Your suggestion for more research in that area is a good one.
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Hello THREE TREE
I started my first dose of letrozole (Femara) 2.5 mg last night, I to have decided to start out with every other day. My common sense after reading up on the drugs and reading post on this site AND after a discussion with my surgeon not my oncologist (he is by the book) I have always thought there is a gray area in-between everything including my treatment.
I hope I can handle it on half a dose with out any of the joint pain, weight gain, ect.... (dare to dream) I am glad to read that some doctors are ok with it. My surgeon at one time relaxed me during a visit when I spoke of my Epic hot flashes before any treatment started and he looked at me and said there have been studies that half of doses are just as good as taking the hole pill. That alone gave me hope. I fine hope is what keeps me going during this journey of BC that has scared the he,,, out of me. But I do need quality of life not quantity.
Thanks everyone for all your support on this site, so much knowledge out there on this site. To bad we all are not given a lab and the money to do trials on these pills.
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Good morning ThreeTree, Since I also started taking letrozole every other day on March 24th, and like you plan to ease into a pill everyday after a month or so.
I am wondering if you are now taking it every day and if so how you are doing?
I am having minimal side affects already not terrible but they are there, fussy head off and on during the day but not every day, slight head ache , and a few time my right risk has throbbing pain! I am also not sleeping very long, I also have so many hot flashes during the day some days better than others.
I fear as I continue with the letrozole my side affects might get worse .
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Hello Walking - So far, I have not changed from the every other day dose, and I'm not sure that I will. I have side effects that I can deal with at this point, and am worried that if I take more, the side effects could become worse and intolerable. Right now I have occasional headaches, joint and muscle aches, occasional hot spells, brain fog, fatigue, "the blahs" most every day all day, irritated eyes, and sometimes more. Most of the side effects fluctuate and vary in intensity. So far and knock on wood, I have not had the insomnia that so many describe. If anything, I sleep more soundly due to the fatigue, and at least in that department, I may have lucked out. I wake up real, real stiff though.
I don't know about posting links here (or if I could find the articles again), but I have read a lot about this drug from info published by Novartis, and reports for the FDA approval, and those documents all say that estrogen suppression with letrozole appears to be dose dependent and that at doses of .5 and above estrogen levels often fall below detection levels. Well 2.5 is a lot more than .5, and according to their own research, the company that makes the drug says that .5 might actually be enough.
The half life of this drug is said to be 48 hours and that too is a factor. My understanding from reading some articles and some other comments posted elsewhere on this site, with a 48 hour half life the drug is in your system at about 100% of the given dose at the beginning of the 48 hours, and then eventually falls to 50% of the dose by the end of the 48 hours. This means that if you take 2.5 mg, you are getting most all of that during the first day and that by the end of the second day (assuming an every other day dose), you still have about 1.25 mg in your system. Since Novartis and the FDA have claimed that doses at .5 and above can often suppress estrogen to undetectable levels, having 1.25 mg in your system at the end of the 48 hours, should be plenty to continue doing the job.
Theoretically it seems to me that a person could take even half a dose (1.25 mg) every other day and still likely achieve sufficient estrogen suppression. That would be 1.25 mg (100%) the first day, and down to half of that (.625 mg) by the end of the 2nd day. Since I am no expert, I don't want to go quite that far on my own, but I think there might be an argument for taking even less than the 2.5 mg every other day. Just my take after reading all of this stuff.
On the other hand one of the articles I read said that all of those doses above .5 do a seemingly effective job, but that research suggested that side effects might not be dose related, i.e. if people are going to get side effects they're going to get them regardless of the dose. That was a minor aspect of what was looked at in that paper though, so I am sure there is room for more research there and that conclusion could have been erroneous for various reasons. Again, just my take after doing some reading - I am no expert.
One big problem here though, is that they do not measure our estrogen levels before, during, or after our AI treatment, so how do any of us (or "they") know just how much estrogen suppression any one of us might actually be getting from any dose of these drugs? There is so much they have not researched, yet want all of us to simply take this one size fits all pill.
Walking - I hope this is some sort of help and that whatever you decide to do you are comfortable with it, and I really, really hope for you that the side effects you do have lighten up and do not get worse.
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Thank you TreeTree, I feel comfortable taking it every other day .
My side affects like yours also fluctuate and vary in intensity, tho I woke up this morning feeling normal (rare) I started walking for an hour a day when I started taking the Letrozole, if I can't walk I have a small fitness trampoline I jump on. I think the exercise does help with side affects, I walked for 2 hours yesterday and wonder if that is why I woke up feeling normal for the first time since I started Letrozole. I am glad I am retired while going thru this BC journey, its mentally and physically tuff. I sit here typing this out and I am getting fuzzy headed ,so much for waking up normal feeling.
I haven't had my radiation yet, my young Russian Radiologist spoke to me about being compromised during the treatment with the Virus going around ( I live in WA state not far from the Epic center of Seattle) he also spoke to me about a study made in BC Canada in 1994/98 because of a shortage of radiation machines in the area they had women lined up to get treated and found that low grade and stage/ small tumors like mine could safely wait up to 20 weeks to have treatment with same results long term down the road, as long as they did the hormonal therapy during the wait and after radiation treatment.
He also said it was a matter of time and women with my stats and tumor size will forgo radiation treatment altogeather in the near future, only to do hormonal therapy.. He let me decide if I wanted to move forward with radiation, I chose to wait. I am now going to be an add on to that study from long ago. ( I did go home and researched the article to make sure I made the correct decision) Also if I could not take any of the hormonal therapy pills during the wait, we would go forward with radiation treatment.
Hopefully by June 8th the virus will have settled down in my area, regardless I will still have to start my radiationin early June.
I do hope my side affects do not worsen as I get more time under my belt.
Thank you for your answer and all the info, its food for thought and I plan to do more research!
If you ever do decide to start taking it everyday I would like to know how it works out. If I ever decide to start taking it every day I will do the same.
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Hello again Walking - While I am very reluctant to put this info out there, I too live in the greater Puget Sound area. A few years ago I used to make monthly visits to the nursing home where it all started, as part of my job. Even though I haven't been there for some time, I can't help once in a while thinking I might have dodged a bullet, just due to the changing patterns of where I go for work.
I only manage to walk for about 30 minutes a day and have considered getting a mini trampoline, but I live in an apartment and have a serious space issue, plus I worry that the sound could bother the neighbors. I still might do it, if I can think of a way to find space and keep the sound down.
My tumor was also on the left side, and for that reason I got proton therapy at the Seattle Proton Therapy place at the old Northwest Hospital site that is now all UW Medicine. I had a reasonable good experience there, and they say it is better for left sided breast cancer. Since you are retired, you might be on Medicare and Medicare does cover it when most private insurances decline to, calling proton therapy still "experimental". Just something you might want to explore while you wait on your current radiation plans. You can call them directly just for a consultation to see what they think about your individual situation. My own oncologist only goes by current standard of care stuff only, only what the FDA recommends, etc., so I had to explore this on my own when I read about it. I discovered that the majority of people who get proton therapy have found it and arranged for it all on their own. We are just lucky to have one of these proton centers in our area when so many don't. When I was going there last fall, I ran into all sorts of people from Idaho, Alaska, etc. - who were all staying in hotels and had traveled far and wide to Seattle, just to get proton radiation.
You mentioned that you are glad you are retired because of how difficult all of this is. I am not retired yet, but I can absolutely relate! During this past year, I have only done tiny amounts of work from home (a few emails and phone calls), but my absolutely wonderful employer (very small family business) have been beyond belief in terms of support and have just kept me on the payroll as usual. It was the physical and mental fatigue of all of this that kept me from being able to really do my job. Just over these last couple of months did I feel well enough to get back out there and start working again, and I visited a handful of nearby nursing and adult family homes (part of my job). Right after those few days of feeling better and like I was finally "getting back out there again" the outbreak happened, so I have been sidelined all over again, and am back to doing just minimal email and phone call work from home.
During those few days in which I did get back out there I did find that the letrozole is a problem. I went steady for about 3 days in a row, just like I did pre-cancer, but on the 4th day, I just had to stay home again and could not do any more for a few days, due to the fatigue. Whenever I can get back to it again (when the virus threat subsides) I will have to learn some way to pace myself so that I don't go all out and then totally collapse for a few days. If I was retired though, I think I could basically handle it, so you have that on your side. Just doing routine daily tasks, taking walks, etc. seem doable with the letrozole. It is trying to do more, both mentally and physically, that causes me problems. Bad fatigue, brain fog, and inability to really focus and concentrate. I can sit and talk to people just fine, and can write these rambling "stream of consciousness" style messages, but anything that requires real concentration, specific organization, and brain power is beyond me these days, and I chalk it up to letrozole.
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Wow ThreeTree, Thank you for the Proton site, I will check into it! I am so lucky to be retired and I wish you all the best during you journey! I hope you start to have less side affects while waiting out the May 4th dead line in our state. Your bosses sound so wonderful, I am glad you have such support during your work. Feel free to private message if you want to.
the trampoline jumping does not make to much noise while jumping on it, put it on a pad or a few throw rugs under the legs and you will not have a problem with noise, also if you have a large chair or table you can move that you don't use do it and set up a trampoline in its place. I moved my comfy chair in my bedroom I used to read at night or day in and I loved the chair but I moved it out crammed it into living room and started jumping, I tried to diet a bit while jumping on it, the first year I only lost 4 pounds very depressing but I did notice my cloths fit way better and I looked better in them so that alone pleased me.
Than I got breast cancer I had to put a hold on jumping until now and I am back at it. I did have to start out slow as I was out of shape at jumping on it, I am up to 15 mins a day plus a walk. I am looking forward to getting back up to an hour of jumping which I like better than having to walk outside in the rain. Get one, it will help. You can also look up how to jump and ideas on youtube. I jump to music , have my own routine that works for me.
take care and thank you again for all your help!
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I started Letrozole 2.5mg on March 20th.The first night I think it kept me awake (took it in the pm). I've been taking it with my lunch now which is better. I have noticed my feet hurt especially 1st thing in the am and also some joint stiffness. My left index finger also hurts more ( I have osteo arthritis in both hands). As far as brain fog I feel like that started prior to my dx. Only one hot flash so far upon waking. I am walking 45 min to an hr when it's not raining/or too cold. I think I felt the cold more this past winter. I haven't been working because of the virus (dental hygienist) so I'm hoping SE don't get any worse. Maybe every other day would be enough? My ER was high 98%. That's what worries me. Everyone stay safe.
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KIDI919, I started taking Letrozole at half a dose on March 24th, the fuzzy head and occasional slight head ache have lightened up, if I sit for a long time my knees are stiff until I move around a bit and it leaves. I still take it at night before bed.
After I have my radiation, I might try to take the hole pill, but if my side affects increase I will drop back down to half a dose.
My ER was 95%.
I also take liquid vitamin D-3 and Calcium & Magnesium Citrate with D3 ,brand name (natural factors) all my vitamins are organic. I think they help with less stiffness.
Walking 45 mins a day also helps. I also jump on my fitness trampoline daily, I am up to between 15 and 20 mins a day. I know we must exrcise to ward off side affects.
I am sorry your feet hurt and your index finger hurts . Hang in there and remember you can also try another hormone therapy if this one does not ease up.
stay safe and healthy.
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Walkingmydestiny: I started taking the 2.5mg every other day. I'm going to see if that makes a difference. I should look into some kind of exercise equipment... so far today we have had snow, rain and hail. I do floor exercises but I don't think that is as good as a walk.
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This has been a really helpful and interesting thread. I had triple negative breast cancer in 2017 and the saving grace was no medication after. But this new primary on the other side (yep, estimated that I'm in the special 1% that get a new primary on the other side) was ER+ PR+ HER2-. After a lumpectomy and three weeks of radiation (thank you, radiology staff, for hanging in there through this!), I just started Letrozole three days ago. I'm pretty concered about being on meds as this is completely new for me. I've had slight nausea but tried eating more for breakfast today when I took the pill so we'll se how the day goes.
I think the "every other day" discussion is a worthwhile one that I hadn't considered and haven't talked to my MO about. It's hard to decide to just keep on daily dose and deal with little or no side effects or consider going to half dose and what that could or would mean. There are a lot of threads to this question. I wonder if you estrogen level correlates with the half dose/full dose question. I can see I still have a lot to learn. My first round of bc was really put in my MO, surgeon, and ROs hands as it was nearly too much for me to handle when I had no support, an adult daughter's life falling apart, and she and two grandkids staying in my 600 sq ft 1-bed condo for two months during chemo. This time is completely different and more positive in every way. I'm willing to ferret through the questions and answers to this Letrozole issue. Thanks, everyone. Julie
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I wanted to add on to this thread that before I started the half dose of Letrozole I also am taking CBD Oil along with it, I take two types (yes my Oncologist and radiologist and surgeon are ok with it. They never once said anything against my taking it.
I take 10 drops of: 4850 Full Spectrum CBD OIL, HIGH GRADE HEMP EXTRACT (50MG/ML) by NuLeaf Naturals, twice a day 5 drops in the morning and evening. The other is: Real Scientific Hemp Oil, Blue Label 10G CBD Hemp Oil (1700MG CBD) twice a day, the size of a grain of rice for this one. sold by: Medical Marijuana, Inc
My side affects are all over the charts with lots of little off and on stuff going on, mostly and foremost the worst are my SUPER NOVA hot flashes. However I carry around in a pocket a blow me cool fan I ordered online from Canada, it saves me from the flashes. Once I have my 3 weeks of radiation I will give the Letrozole a 3 month try to see if I want to try something else that might not give me such intense hot flashes.
Everyone stay safe and healthy.
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OK I am adding on to the above post, I started taking two types of oil after my SUPER NOVA hot flashes started, I doubled down, However I still get one everything evening which a cool shower takes care of but before I started the second type of CBD oil the
SUPER NOVA hot flashes where almost all night long, no rest! My day flashes are not so intense and they have gotten better with the CBD oil double down so maybe just maybe as time goes on the Oil will make an impact of lessening all of the hot flashes. I do sleep better also.
I also drink lots and lots of water, eat healthy, just enough to get by as I am worried about a weight gain on the Letrozole..... as I stated above I also take some vitamins and get lots of exercise daily. I love my little fitness trampoline from costco on line last year. NO sugar (which I miss) I get sugar when I buy the vanilla Almond milk, which I will quite and go to plain. I started to drink goat milk instead of cows milk, it took some time to get used to the taste but now I prefer it over cow dairy. My milk intake is very low so I do not worry about drinking it. OK I THINK THIS SHOULD WRAP UP MY ADD ON,S.
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Hello KID1919 and anyone else taking half a dose of letrozole, I started taking it everyday 1 week out from my radiation which was June1st.
before radiation I was taking letrozole every other day, I have been on it for 2 weeks now and so far the SE are not to bad, I will keep posting as time goes on with any SE that suck! I have added Claritin to my daily pill intake, I have read on this site from women in the past that Claritin regular not D, helps with SE, sore, stiff joints so I am going to keep taking it with all my other supplements.
So as of today I feel ok on the letrozole daily dose. I am kind of tall 5"7 1/2 tall, weight 168 # age 64. I hope to get my weight down to 155 which is where I was at before my diagnosis of BC. I gained all the weight from my pity party and just being nervous during the beginning. I think if I were petite and a smaller size of women I would continue to take the letrozole every other day.
I will also have to start getting a shot twice a year (Prolia) my DEXA RESULTS showed I have osteopenia in my lower back (that would explain my back pain these past years) the Prolia shot twice a year should keep the letrozole from turning the osteopenia into to osteoporosis. I guess I will have the shots for 3 years and we will see where my osteopenia is at.The letrozole does cause bone loss, thats why my oncologist at the start of my lertozole road trip had the DEXA test ran.
I am kind of bummed out that I will have yet another drug in my system. oh well.
I will post if my SE get to where I can't stand them I will tell my Oncologist and he will switch me to something else, I feel I will try them all if need be and choose the less of all evils with AL's.
My radiologist on my last day and visit talked to me about side affects and said do not put up with any terrible side affects for to long, there are other Al's I could try that might work better for me.
I will go with his advice.....take care all!
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The thing about the study where people took Letrozole on MWF only and on MWF at lower doses, is that while all the groups still had estrogen blocked, they also all had the same side effects. In other words, taking lower doses had the same cancer prevetion effect, but even at very low doses they still had all the side effects. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4740217/
I read about a case with severe depression (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC60489...) that sounds quite like my reaction to Letrozole. However, notice that the woman felt worse immediately after she went off of it. I am suspicious that taking a full dose every other day would cause mood swings due to hormone fluctuation. My theory is that half doses every day woudl be better than whole does on M W F. I can't find any studies on this but If I do, I will post them on this thread.
I currently take whole doses 5 days a week and half doses 2 days a week. I told my oncologist I thought it was better than not taking it at all and true to form (as with many of these oncologists) she disagreed. She thought I should "see someone" about the depression Like going to a therapist and saying "I"m taking Letrozole and it causes severe depression" would accomplish anything.
So, statistically people who take less than the full dosage have the same side effects. But if *you* are one of those who can reduce side effects with lower doses, that study reassures you that you are not losing the protective benefits.
I also found a study where people took letrozole full dose daily for 9 months each year and had 3 months each year off, taking it for a full year on the 5th and final year with good results. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4740217/ I mention it in case that sort of regime would be helpful to anyone.
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Babalou - I think the MWF having the same side effects demonstrates that the side effects are the result of estrogen deprivation and that all of these dosing levels produce the same effect - presumably the same protective effect also. There is something in one of the studies (don't have which one handy right now) that says that actually in terms of protective effect, every other day is better than half a pill every day. It has to do with the half life of the drug. When you take it every other day, you start with the "full dose" and after 48 hours you are down to having about half of that still in your system when you take the pill again. If you take half a pill every day, you only ever have a "half dose" in your system (although some of these studies do suggest that even that is enough to provide a protective effect). I think your suggestion that every other day might increase mood swings does have merit and maybe they should study that. I think that some people just get more mood swings though, and maybe more intensely so than others, no matter what dose schedule they use. Like some get more body aches, some get more mood swings, etc. Some of the original research that Novartis did seems to show that lower doses provide adequate levels of estrogen protection, so I'm not sure why they went with such a seemingly large dose. I think some people are actually overdosed on the standard dose.
I totally understand what you are saying about the oncologists not even being open to the idea of anything but the 2.5 mg per day. Apparently that is the CDC (FDA?) recommendation and they won't budge from it, no matter what other evidence is out there. Not until the CDC or FDA say otherwise.
I also agree wholeheartedly about the "maybe you should see someone" stuff. Exactly - the pill causes the side effects/depression and the effects are supposed to just stop from "seeing someone". Please!
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I would give serious thought before taking an AI, especially if I was grade 1, stage 1. Most likely, all grade 3 patients who are offered it by their MO would benefit, and those with grade 2, stage 1 may or may not. I was grade 2 stage 1 and only stayed on Letrozole for 6 months. I wish I never went on Letrozole to begin with as it doubled my cholesterol level and gave me joint/bone pain.
I refused Tamoxifen in 2003 and never got IDC again. Yes, I was diagnosed with a tiny ILC, in December of 2018 in the same breast, but a year and a half after my mastectomy with no other treatment, I am cancer free and have normal cholesterol levels!
Sadly, we all must do our homework on this and apply it to our body.
AI's are theoretical preventatives. You are being treated for a "possible risk," unlike other preventatives like those for high blood pressure (hypertension) which is a condition you either have or don't have.
Regardless, I wouldn't even consider half a pill.
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