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half dose of Femara

Has anyone heard of successful treatment using only 1.25 mg of femara daily?

Has anyone gone from 2.5 mg to 1.25 mg for management of SE's, did it work?

I would love to hear some success stories:)

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Comments

  • 3jaysmom
    3jaysmom Member Posts: 2,604
    edited April 2010

    don't know! would like 2 hear answers too. i got so sick,crazy onco. took me off it. said lower doses w/not work.anyone ?..3jaysmom

  • Alcie1
    Alcie1 Member Posts: 7
    edited April 2010

    I was also taken off AIs because of side effects, was not given an option of a half a pill.  Of course no matter your age, weight, hormone status or anything else, there is only one dose.  So your doc has no option.  It's take it or don't take it.

    I've read of several women on this forum who have taken half pills, taken them every other day, half pills every other day, and so on.  If I had been allowed this option I would have tried it.  Being off AIs altogether is frankly frightening.

    If I had been told that "lower doses will not work," I would ask where is it written?  I would sincerely like to read any study that came up with that notion.  Until proven otherwise (and I am just a mom, not a researcher), I feel that we should have our hormone levels tested to see how much we need to get us to a "safe" level.  I know that my pre-med hormone level was so low it was causing me to have clinical symptoms like osteoporosis and more.

    AIs are not the only meds that are given one-size-fits-all.  Plavix is another example.  I had to ask to stop that one (tolerated badly for a year post heart attack)  because I was tired of the constant bruising and nosebleeds.  It's the same dose for a 90 ld old woman and a 400 lb man.  Ridiculous!  There has to be a better way.

  • Heathersmom
    Heathersmom Member Posts: 4
    edited May 2010

    Thanks Alcie 1, I will see my onc next week and request to do every other day or something like that and see what he says.

    He told me when I started Femara that if I couldn't tolerate it that we would look into seeing how well I metabolize Tamoxifen, then put me back on it if I am an excellent metabolizer.

    I didn't like Tamoxifen, I would rather be on the Femara, because of the libido problems I had on Tamoxifen and the foggy brain issues,however  the Femara joint pain is a real pain. I would like to see if I could tolerate the pain better and have better quality of life if I could cut the dosage in half.

     If I am successful in getting the onc to agreeing to this I will definitely post it here!!

     Here's HOPING!!!!!

  • Alcie1
    Alcie1 Member Posts: 7
    edited May 2010

    I quit the AIs because it wasn't worth becoming a cripple for the very small risk I was adding.  My oncotype was only 7 and my normal estrogen level is very low to begin with.  After nearly 2 months off I feel like I can function again.

    I can't take Tamoxifen because I have a history of heart attack, have all my parts, and a fibroid (or something) on my uterus.

    My life expectancy - for age 65 + having had a solid tumor + heart attack is only 21% for the next 7 years (De Meester score).  I'd rather live comfortably.

  • carol1949
    carol1949 Member Posts: 48
    edited May 2010

    I have seen on this site women from other countries who say that their DR. ok'd half pill or even every other day.  I tried Femara for a few months and chose not to take it.  I feel much better without it, not to mention the long term s/e's.  I work with the public and have met several women also w/in my support group who are long term survivors and who chose to take nothing for various reasons.

    Do your research.  There are so many other options out there.  I take Lugol's iodine which does much of the same thing the Femara does.  It blocks estrogen.

    Good luck.

  • nursecal
    nursecal Member Posts: 34
    edited May 2010

    I have been on femara for 5+ years now, 6 as of October of this year.  Onc kept me on it since I had 14/32 node involvement.  However, over the past couple of months I have been having extreme joint and bone pain.  I had some bone pain during some of the time of taking it.  I just recently weaned myself off Effexor that I had been on for hot flashes.  I was attributing the additional pain to the no Effexor, but now am wondering if it is the Femara.  I plan on contacting my onc next week about this but was wondering if anyone else has completed the 5 years and then continued or stopped and what the results were like.  It sounds to me like once some are getting off the Femara the pain gets better.  I know I have some arthritis now, but I feel like I am 90, not 57.  When in church this evening or sitting and standing my knees are unbearable....ortho says it is arthritis.  Is the Femara causing the arthritis to occur faster?  I know it has caused trigger fingers in the past.

  • carol1949
    carol1949 Member Posts: 48
    edited May 2010

    Yes,
    Femara caused joint pain, and I could bearly get up from the sofa!  Now that I am off it, I feel "normal" once again.   I am taking tap dancing also!  60 years old.... not ready to deal with all the s/e's and/or the bombardment of meds to counteract each other.

    Fortunately, my onc is very open minded and said the less medical intervention, the better I will be!

    I have met too many women who chose to just live their life holistically that are long term survivors (some 20 years!)   so I not willing  to succomb to all these horrible drugs.

  • sbuchheit
    sbuchheit Member Posts: 1
    edited November 2010

    I am most concerned about losing hair taking Femara - is that a given - all your hair?

  • EWB
    EWB Member Posts: 592
    edited November 2010

    never heard of total hair loss w Femara. So experience some thinning but never heard of anything severe.

  • mavrikt
    mavrikt Member Posts: 2
    edited November 2010

    Had been on arimidex for a year after 3 yrs or so of tamoxifen.  S/E's, mainly joint pain, brought about discussion with Onc.  She said she was good with either arimidex or femara, so I started Femara 4 months ago.  Joint pain remains, maybe worse actually, and now after 4 1/2 yrs of no period, it's back!  I'm nearly 50, haven't had any since before my bi-lat in April, 2006.  Going for blood work in next day or so to see what's up with my hormones.  Weird thing's started 2 months or so after starting Femara.  I started feeling bloated with no relief. Last month's ultrasound with TransVag was clean...now this.  Anybody had their period come back after 4 1/2 yrs?

  • Kay9
    Kay9 Member Posts: 2
    edited April 2012

    Did you have succes using 1.25 femara?

  • Kay9
    Kay9 Member Posts: 2
    edited April 2012

      

    Any success using 1.25 femara

  • Windy5
    Windy5 Member Posts: 1
    edited September 2012

    I was suppose to start taking the al's last January and did not start until 2 days ago, eight months later. Every dr. I saw kept scaring me and telling me to take it. I finally started taking it out of fear. Not sure if I will continue, so far no side effects but I am definitly fearful. I am seeing a different oncologist next week and hoping I could get some support not to take it.



    My oncotyle was only 6 and they said if I did not take the drugs it would double to 12. When they tested me for estrogene mine was very low. I am 65 and do not understand why we need to take it if our estrogene is low.

  • lightandwind
    lightandwind Member Posts: 97
    edited September 2012

    I am interested in knowing if anyone else has split their dose of femara of they've talked to their oncs about this.

  • Jacqui42
    Jacqui42 Member Posts: 1
    edited August 2013

    I started developing hideous side effects a little over a year into my Femara chemo--which i am to take the rest of my life.  I may have a damaged left kidney as a result of Femara. I cut my dose in half last night because I had bloody urine and it was midnight and I feared to take the full nasty dose.  I'm sure my oncologist will scream.  All the other chemo therapies are worse than Femara.  I don't know what to do.  I do feel better on this half dose.  I'll talk to the doctors tomorrow.

    The Medical World tends to use a big hammer when it comes to medication. When they first started out with birthcontrol, the doses were way too high.  When the medical world went to hormone replacement therapy for menopause, the doses were way too high as well and they used horse urine.  I guess I'm betting my life, but I am in terrible pain with what is probably a kidney infection.  I hadn't had a UTI in 50 years prior to going on the Femara.  

    I think the Medical World may have this Femara dose too high as well.  I'll see if I have enough nerve to take another half dose tonight.

  • KR13
    KR13 Member Posts: 5
    edited November 2013


    I found this information on a Novartis study website, take from it whatever you will, as for me I am going to try half doses.


    Femara dosing:


    "In postmenopausal patients with advanced breast cancer, daily doses of 0.1 to 5 mg letrozole suppressed plasma concentrations of oestradiol, oestrone, and oestrone sulphate by 75 - 95% from baseline in all patients treated. With doses of 0.5 mg and higher, many values of oestrone and oestrone sulphate were below the limit of detection in the assays, indicating that higher oestrogen suppression is achieved with these doses. Oestrogen suppression was maintained throughout treatment in all patients."

  • friscosmom
    friscosmom Member Posts: 15
    edited May 2014

    I have not had my period in over 4 years after chemo induced menopause. Have been on Tamoxafin for almost 4 years now and just started 'menstrating' 4 days ago. I'm 46, was 42 when diagnosed, I'm a bit concerned... Anyone here had similar experience???  

  • friscosmom
    friscosmom Member Posts: 15
    edited May 2014

    sorry wrong board...

  • yorana
    yorana Member Posts: 1
    edited October 2014

    KR13, thanks so much for this info!  So, it appears that 0.5 mgs works as well as larger doses, in that anything at or above 0.5 mgs makes estrogen undetectable.  I started splitting my pills a few nights ago because of hot flashes and insomnia, and it has helped.  If 0.5 makes estrogen undetectable, then using over twice that amount (1.25) should be just dandy if not overkill.  I don't know if I'm going to mention that I'm doing this to my doctor, but if I do, I will probably have these results printed up when I talk to him.  

  • AmyQ
    AmyQ Member Posts: 821
    edited October 2014

    Yorana, 

    I wonder what would happen if you took half a pill in the morning and the other half at night?  Just a thought...

    Amy

  • Mary_g92844
    Mary_g92844 Member Posts: 5
    edited October 2014

     

    The real question here seems to be "will altering my dosing keep my estrogen levels low enough so that any estrogen receptive cancer cells lurking in my body cannot use my estrogen to stimulate growth".   We know that is why we're offered these drugs, not because our doctors want to torture us.


    Estradiol in the blood and saliva can be measured.  When I was first diagnosed, before starting Femara, my oncologist ran lots of blood tests, and estradiol was one of them.  Perhaps your oncologist would agree to let you try it every other day or a half pill, then measure your blood estradiol to see how it works for you?  If he/she will not, there are online kits and labs who will measure it for you without your Dr approval (in the U.S.), but using your own doctor is always best (IMO).

    I still do take it every day until I feel sick again.  Then I go to 4 days a week until I catch up on my sleep and get rid of the nausea.  I have an appt with my oncologist soon and I do plan to talk it over with him again, although with my oncotype he is sure I need the AI for at least 10 years (He hinted at forever). 

  • mortmain
    mortmain Member Posts: 25
    edited October 2014

    I too am very curious about lower dosages. The 'one size fits all' has always struck me as strange although I'm sure researchers came to this conclusion for some reason. For example, when used birth control pills, I was on the lightest effective dose because I experienced breakthrough bleeding with anything higher.

    Anyone find any other studies on lower dosages of AIs? I will take my first AI pill this evening (Anastrozole) and dread it.

    Amy

  • meow13
    meow13 Member Posts: 1,363
    edited October 2014

    My tongue felt fat when I start anastrozole. It was a little scary but it seemed to go away.

    The final straw was when I couldn't get out of bed one morning really achy. I was switched to exemestane.

    I'm ok but tired oh yah the ringing in my one ear and the degenerative arthitis in my neck(That does feel a little better).

  • farmerjo
    farmerjo Member Posts: 239
    edited July 2015

    Bump, please!

  • threetree
    threetree Member Posts: 1,159
    edited January 2020

    Bump, and could people please answer the originally posed question about whether they tried a half dose and what the effects might have been, rather than simply describing the negative side effects of AI's that they've taken? Not to minimize anyone's negative experience with AI's in general, but the question is about noted effects of taking only half the dose of Femara/letrozole.

    I am supposed to start taking this and like so many am quite scared, so would really like to hear anyone's response to the original question here.


  • Fiddler22
    Fiddler22 Member Posts: 2
    edited February 2020

    I was mystified to read in the materials given to me by the oncologist that, even though everybody is given 2.5, the amount supposedly needed to do the job is 1. I've been meaning to ask her about this.

  • threetree
    threetree Member Posts: 1,159
    edited February 2020

    I have read that doses of .5 all the way to 5.0 can result in undetectable levels of estrogen. I continue to be baffled as to why everyone is supposed to take 2.5 per day in our cases. I have also read that taking 1.25 each day (half the 2.5 prescribed) is not the same as taking the 2.5 every other day, and that 2.5 every other day actually provides better coverage. It supposedly has to do with the half life of the drug which is 48 hours according to most sources, although I did see one that indicated the half life of letrozole is 72 hours.

    I would really like to hear other people's thoughts and experiences about this, because it would be so much better to just take this pill every other day, if even these lower doses can result in effective estrogen suppression. Aside from the side effects, taking it every other day would cut the cost in half and only half of the dyes, fillers, etc. would wind up in our bodies - and in the water table, etc. (causing damage to fish and more).

    Has anyone heard why the 2.5 per day dose is prescribed, when lower doses have been shown to produce undetectable levels of estrogen? Has anyone had their estrogen levels checked routinely during the course of their letrozole treatment? I also fail to understand why my oncologist at least, has not done any estrogen level checking. I thought the goal was to achieve an acceptably low level of estrogen. If lower doses can do that, why is everyone prescribed the 2.5 mg per day without even knowing what their estrogen levels are? When I asked the oncologist why estrogen levels aren't checked, she said, "We just don't do that", and seemed to not want to talk about it any more.

    Very curious about this whole issue.

  • michrsm
    michrsm Member Posts: 3
    edited February 2020

    I started Femara yesterday. I am esp. worried about the bones & joint side effects because I have some arthritis and osteoporosis already. My oncologist said to try stay on the Femara for at least 4 weeks as the side effects (she claims) often get better after 4 to 6 weeks. I wonder if I will have any SE's and when they will show up. I am interested in hearing how others are doing with the side effects. Thanks!

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited February 2020

    Double-blind, Randomized Trial of Alternative Letrozole Dosing Regimens in Postmenopausal Women with Increased Breast Cancer Risk

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4740217/

    .

    "We conclude that low and intermittent doses of letrozole (as low as 1/24th of the total dose received in the standard dose arm) were not inferior to the standard dose in estrogen suppression at the end of agent intervention. The effective estrogen suppression with low and intermittent letrozole doses was accompanied by similar adverse effects on C-telopeptide levels when compared to standard dose. The changes in QoL and self-reported AEs were also similar among the dose groups."

  • threetree
    threetree Member Posts: 1,159
    edited February 2020

    Beesie - Thanks for posting the link to the study. I had read this study before and told my oncologist about the results and she was unimpressed. She said that she could only support what the FDA has approved and that is the 2.5 mg per day. I had told her I was taking the pill every other day after reading the results of the study you linked to and some other info. I told her I thought I could probably do this, but was not sure that I could muster up whatever it would take to start taking the daily dose. She insisted that I was only getting half the benefit if I continued to take the letrozole every other day. She said she thought I was short changing myself. My understanding is that the drug half life is 48 hours and as the study concluded, all these different lower and intermittent doses also achieved effective estrogen suppression levels.

    I do not understand why there is not more out there about this; why more people aren't talking about it, and why these lower and intermittent doses are not being suggested by medical providers. It could make a big difference in people's ability and willingness to take it.