Is anyone taking letrozole and have side effects

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lakelady1952
lakelady1952 Member Posts: 1
edited October 2023 in Breast Cancer #1

I was diagnosed with breast cancer last year, had a mastomy in June last year. I have been on letrozole since August. I have gain about 20 pounds, joint and bones ache, and very depressed. Has anyone had similar side effects?  My husband also was diagnosed with lung cancer in Dec 2012. He also battles with side effects of chemo for over a year. We go back to Duke May 8th for his scans. 

I just can't seem to lose the belly fat!  Taking the pill has been very hard for me, lots of side ffects. I just finished a wonderful book, Radical Remission. It makes so much sense. Highly recommend reading it!

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  • camul
    camul Member Posts: 2,537
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    Welcome. Glad you found this site.
    I was on it for about 7 weeks. The muscle pain combined with bone pain from bone mets, and joint pain was too much. Switched to Aromasin. Even with that there.are se. My bone pain increased and I have gained about 10 lbs. Aromasin is working better pain wiseand I will find out if it is working ok slowing the cancer. But I dont know of too many people who do not have se from any of the hormonal drugs. I just had to find one that was slowing down the cancer, yet affording me some quality of life.
    There were a few.others here on it, hopefully they will seee your post and chime in.
    Best to you,
    Carol
  • tahiti
    tahiti Member Posts: 1
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    letrozole

    I took letrozole for several months and lost half my hair.  I stopped over a month ago and it is still falling out.  Reading this site I see that all my bone, joint and foot pain is largely due to this drug.  When will the pain subside ??  when will my hair stop falling out ?  ever ?  will it grow back ??  I have to say that reading this site has helped me to realize all my pain is very real and is not my fault !!

     

     

  • 300 blossoms
    300 blossoms Member Posts: 1
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    tahiti said:

    letrozole

    I took letrozole for several months and lost half my hair.  I stopped over a month ago and it is still falling out.  Reading this site I see that all my bone, joint and foot pain is largely due to this drug.  When will the pain subside ??  when will my hair stop falling out ?  ever ?  will it grow back ??  I have to say that reading this site has helped me to realize all my pain is very real and is not my fault !!

     

     

    I take Letrozole and have no

    I take Letrozole and have no noticeable side effects.

  • davisvicky1
    davisvicky1 Member Posts: 3
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    I am supposed to start

    I am supposed to start letrozole and I am putting it off......trying to read blogs to find which one has the least side effects.  Cannot afford to gain weight......I already struggle with that.  DO not want to lose my hair, do not want joint pain.....I work full time and live alone.  I already struggle with sleep too.  Anyone else NOT take it?  I am leaning toward not!

     

  • davisvicky1
    davisvicky1 Member Posts: 3
    edited March 2018 #6
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    I take Letrozole and have no

    I take Letrozole and have no noticeable side effects.

    what manufacturer is the one

    what manufacturer is the one you are taking?  how long have you been taking it?  You are either lucky or on a good one!!!!!

     

  • Beepositive
    Beepositive Member Posts: 259 Member
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    Davisvicky1 hello

    hello Davisvicky1

    I have been on Letrozole for about a year and only side effects are the joint pains mostly legs when I first get out of bed and sit for long periods of time! but I get on treadmill for about 20 min a day when I first get out of bed and that really helps with the joint pain. no hair loss  and I am watching what I eat along with keep moving with some exercise daily (dr said there should not be maybe a little thinner over time) but everyone body reacts to medicine different . All drugs have some side effects even cough medication etc but the good should out weigh the bad. if I find it no longer manageable I will discuss with my medical Oncologist on other options...so far so good.

    Good Luck with everyThing   Hugs 

    BEEPOSITIVE

  • Teach76
    Teach76 Member Posts: 354 Member
    edited March 2018 #8
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    Loss of seratonin

    I have been on Letrozple for 14 months.  SE include thinning hair (taking Biotin and using a Biotin/ collagen shampoo), foot pain unexplained ( tried a variety of shoes, Crocs and Merrill found to be best), joint pain especially when I sit too long, and Anxiety!!!!  I spoke with my PCP and explained the research I found between letrozole and loss of seratonin.  For 2 months I have been on a low dose anit-anxiety drug.  Noticeable difference in mood and focus is better.

    As others stated, SE may be different for each of us, and it also depends on your tolerance and what other conditions may be just surfacing because of age.  For me, Letrozole for 10 years for the chance at a lower rate of recurrence is a gamble.  Not sure if I will continue years down the line, but giving it a chance for now.

    Kathy

  • az201013
    az201013 Member Posts: 1
    edited July 2021 #9
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    letrozole

    I have been taking letrozole for 3 years and I am wondering if that has caused my belly to blossom. I look like I am 9 months pregnant and can't figure out why....help...

  • yetti
    yetti Member Posts: 82 Member
    edited July 2021 #10
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    Letrozole since 4/2019

    I'm actually an endometrial cancer stage 4B survivor ! 

    I have been on Letrozole since April 20 2019. It has its side effects for sure!  I Started out with neck and shoulder pain first approx May,-June 2019. I didn't realize it was a side effect of the Letrozole, I was at a women's cancer support group, another survivor pointed out it was the Letrozole, she had been on it since Jan 2019; I had lost about 65#s from the cancer, no appetite, I had the weight to lose!  Once I had started to take Letrozole the weight had started to come back on ugh!  My only + to the cancer if there is one, was the weight loss!  I lost most of my hair from chemo, it was so thin I had what was left shaved off! It started to grow when I finished chemo late March 2019; It'has grown back but very thin and fine, and still short after 2 years now!  I also have leg and knee pain and stiffness! if I sit for too long, I have a difficult time standing up to walk! It's embarrassing it makes me feel like I'm 80! I'm 59! I have tried to get my Gyn onc to let me try a different hormone blocker!  She was not open to it, said they all have the same side effects!  I feel it's a cop out ! They all can't suck like Letrozole, besides I could have none or some, but perhaps it could be better! Since Letrozole is working, she won't change it! NED since April 2019  I hate the side effects !   Sincerely Yetti 

  • Trixie13
    Trixie13 Member Posts: 2 Member
    edited November 2021 #11
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    Letrozole and my experience

    I’ve been on letrozole for about a month.So far I have had thinning eyebrows and eyelashes. Sad to see this after i just grew them back recently! I have had anxiety, crying episodes, some low moods, and trouble with sleep.  I  am trying a low dose of Celexa (SSRI) to see if it will help. I have read that letrozole is quite effective for reducing my risk recurrence of cancer. I had invasive lobular, stage 3A. I appreciate hearing what others have experienced and how to deal with side effects.

  • gibby13
    gibby13 Member Posts: 5 Member
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    I have been on Letrozole for almost one month. This was after having too awful of side effects from anastrozole and exemestane. I thought I was tolerating the exemestane until I had my prescription refilled and it was filled with a different manufacturer than what I was using (out of stock and on back order). I am noticing some nausea and aches and stiffness. getting up from a squatting position is tough and sitting too long causes worse stiffness. My only salvation is going to the gym to use the treadmill and recumbent bike to loosen up my muscles and then stretching for at least 20 minutes. Days that I don't do this, I feel much worse. The endorphins your body gets with exercise help to relieve some of the side effects. I am hoping the SE don't get any worse. My quality of life is important to me. I am 61. My friend who was younger when she went through this gave up on the aromatase inhibitors to get back some quality to her life. She also had a double mastectomy and has been 11 years without recurrence. I am meeting with my oncologist next month and I plan to discuss what else I can do to deal with the nausea.

  • oldgirl
    oldgirl Member Posts: 6 Member
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    I changed brands about 4 months ago with Letrozole as I was getting hot flushes but now I have a chronic cough. It can be a side effect but my GP sent me for a chest x-ray, which was negative. Nothing seems to make it better. Does anyone else experience this? Thank you.

  • jsa
    jsa Member Posts: 1 Member
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    I quit taking my Letrozole last month. I just couldn’t stand the sore joints and feet. Also my night sweats were extreme. my joints are better although still a bit sore, but what I really notice is my mood is soooooo much more upbeat. I am scared that I stopped taking it. I have an appointment with my oncologist next month and will have the discussion about it then 😊

  • Cariem
    Cariem Member Posts: 4 Member
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    I have been on Letrozole for 1 month. The side effects I have noticed are belly weight gain, sore elbow & knee, sudden sadness in which I start crying for no reason, night sweats and trouble sleeping. I am also considering going off of it for a while and meet with my onco. I just don't know how to deal with the side effects as they make my quality of life worse.

  • Momschooling
    Momschooling Member Posts: 107 Member
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    I started letrozole a week ago (ovarian cancer), I get weird moments where I feel a bit faint and almost like crying, very strange. I am having stomach pain that comes and goes all throughout the day. When does the peak period start for side effects?

  • oldgirl
    oldgirl Member Posts: 6 Member
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    I have had a chronic cough since starting letrozole. It may or may not be a side effect. Sorry to hear about the trouble you’re having.

  • kderito
    kderito Member Posts: 3 Member
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    I’ve been talking Letrozole and I normally have joint pain from my past injuries. I’m only taking it every other day. I don’t really want to take it because of the side affects. The night sweats. Etc. I am cancer free and I had the radiation for what? Just to reduce the 20 percent chance of it coming back. Ok so now the 5 year pill to reduce the 3percent? I don’t know if I want this.

  • oldgirl
    oldgirl Member Posts: 6 Member
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    Good point. I’m on 1 a day, also having zoledronic acid bone infusions (the side effects of which are potentially horrendous - ie jaw necrosis) but didn’t have radiotherapy. The percentages of success rate/length of survival enhancement were pretty low and I’m 78. Why did I bother? Because I’d be more worried otherwise!

    I don’t know how bad your joint pain is or if it comes and goes? Mine isn’t too bad, mainly unable to lift my left arm when I get up. I don’t know how I’d react if it were bad - probably ask to go on another drug, which I was told I could do.

    Good luck

  • glendad
    glendad Member Posts: 3 Member
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    Cariem I have been on letrozole twice back in 2016 and now. In 2017 I quit all aromatase inhibitors for the reason you describe. Due to mets 7 years later I am back on letrozole. I exercise a lot to keep the joint pain minimal. My issue is night sweats, trouble sleeping, mood swings, and feeling like I am loosing control. I felt like I could not continue. The Dr gave me an antidepressant to help with the symptoms. Perhaps you can consider discussing that with your oncologist.

  • oldgirl
    oldgirl Member Posts: 6 Member
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    Yes! I changed brands for letrozole but have chronic cough. Now having awful pains in my arms which I suspect is bone infusions. I’m 78 and wonder if it’s worth continuing with the bone infusions. But they scared me with the possibility of bone cancer!! What shall we do??