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  • arabiansrock
    arabiansrock Member Posts: 98
    edited December 2020

    I just started letrozole this week. Am starting with taking every other day since these pills cant be split because of enteric coating. Any idea how long it takes side effects to start showing up? So far I've done 2 doses, and nothing bad has happened. If you are going to get hot flashes do they start right away? Thank you for any input!

  • quinnie
    quinnie Member Posts: 221
    edited December 2020

    My hot flashes started within 2 weeks or so. I have been on Letrozole since May 2020 and the joint pain didn't start until 6 weeks ago. My ankles, elbows, hands and thumbs ache. Not overwhellming but annoying. None of the aches and pains limit my activity but it takes a little longer to get going in the morning. The hot flashes are driving me crazy. Enough that i might ask my MO to change my meds. I see her next month but I am afraid that all the meds cause hot flashes so not sure if it is worth changing.

  • cm2020
    cm2020 Member Posts: 615
    edited December 2020

    quinnie...I have been on Letrozole since April 2020. My hot flashes have been brutal as well. The absolute worst of them is at night. I saw my MO for my regular appointment a few days ago. She put me on Neurontin (can't remember the other name of it) for the hot flashes. It has make a world of difference! I take it at night and it helps with sleep as well as the hot flashes. I have been dry and slept every night since starting it. It is wonderful not waking up in a pool of my own sweat. She offered 3 different meds that help with hot flashes. We chose this one because I am having horrible peripheral neuropathy in my hands (caused by Letrozole) and this drug helps with neuro pain. It has not helped my hands much. She also referred me to ortho to a hand specialist to get help with the increasing neuropathy. All of this to say, talk to your MO because there is help out there for the hot flashes. I also want to offer you some encouragement about your joint pain. Mine was horrible for several weeks. I start doing yoga and stretching daily and it helped a whole lot. After a few weeks I found the joint pain just went away and stayed away whether I did yoga or not. Hopefully yours will follow the same path. Hopefully you will also NOT develop peripheral neuropathy.

  • Kamboka
    Kamboka Member Posts: 975
    edited December 2020

    quinne: I was given the anti-depressant, Celexa, for the hot flashes. It definitely helps with the hot flashes and I think any mood problems as well. Good luck with finding the right thing that can help you with the side effects.

  • LillyIsHere
    LillyIsHere Member Posts: 830
    edited December 2020

    arabiansrock, in my case, I can't really say when Letrozole's SE started since I was on monthly lupron shots and going through surgeries while in letrozole. For sure, on the 6th month of letrozole and after all other crap, I start feeling SE mostly join and muscle pains. I am a yogi, and I push myself to continue yoga even through the pain. I can say lately, there are more good days than bad days. Actually, it is getting easier to manage pains or I am used to having them. I can't figure out what type of food or lifestyle change can flare SE of letrozole. But, it is getting better.

  • quinnie
    quinnie Member Posts: 221
    edited December 2020

    cm2020: thank you for your response. I will talk with my MO about adding a med or changing my letrozole. I'm sorry you have neuropathy. I do not have any symptoms of PN yet. I also do yoga a couple times a week and that really helps. Its interesting that some days are worse than others in regards to hot flashes. I haven't had one yet this morning but yesterday I was miserable. Taking letrozole at night didn;t change anything for me so I continue to taken in the am.

  • Nsbrown54
    Nsbrown54 Member Posts: 908
    edited December 2020

    Can you experience side effects shortly after starting letrozole? I stated taking it Tuesday and have been feeling exhausted the last two days. I’m making myself walk at least 20 min per day and doing some easy things around the house, but just general malaise. I’m also experiencing some nausea, treating it with zorfran.

    I’ve had issues with anemia, low potassium and low magnesium so I plan on calling my oncologist on Monday.

  • ThreeTree
    ThreeTree Member Posts: 709
    edited December 2020

    I've been taking letrozole since January and I seem to remember getting a back ache, stiffness, etc. pretty quickly. I continue with the general malaise, along with joint and body aches, plus more. I've had low potassium problems, but not magnesium. Also just outside of being anemic - low normal, but maybe there is a connection to letrozole. I try now to eat a food that has a lot of potassium (e.g. acorn squash, potatoes, coconut water). I also try to walk for 30 minutes every day. I average 4-5 days a week. It's a real struggle and I have to do all of these things just to maintain a level where I can at least continue to take the drug and not have to quit. The nausea I've had has been mild, and intermittent so I haven't really bothered to try and treat it with anything.

    Sorry you are having all these problems! Good luck in sorting it all out and finding a way that works.


  • Nsbrown54
    Nsbrown54 Member Posts: 908
    edited December 2020

    Thank you for the response ThreeTree.

  • LillyIsHere
    LillyIsHere Member Posts: 830
    edited December 2020

    Nsbrown54, the first time I started letrozole, the pharmacist told me the first few days you will get dizzy, etc. and then it goes away. For me, on the month of 5 and 6 I felt worst but now it is getting way better.

  • Nsbrown54
    Nsbrown54 Member Posts: 908
    edited December 2020

    Good to know. Thank you for the response LillyIsHere.

  • nyperr
    nyperr Member Posts: 8
    edited December 2020

    I just finished radiation and am to start taking femara - letrozole. There were no instructions as to whether to take with food or on an empty stomach? morning or evening? Any suggestions?

  • Nsbrown54
    Nsbrown54 Member Posts: 908
    edited December 2020

    From what I've read, there's no recommendation as to when to take it or with/without food. And my oncologist didn’t make a recommendation I've been taking it with dinner. I started 10 days ago

  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited December 2020
    When I took Anastrozole on an empty stomach, I felt horrible. Nausea and dizziness. I haven’t tried it with the letrozole, but I would think it would be the same reaction.
  • cm2020
    cm2020 Member Posts: 615
    edited December 2020

    I have been on Letrozole since April (with time off it for radiation) and have always taken it first thing in the morning without food. So far it hasn't bothered my stomach at all. You might need to try it different ways to see what works for you. Congratulations on finishing radiation!

  • moth
    moth Member Posts: 4,800
    edited December 2020

    cm2020, why did you have stop taking it during radiation? I've just started it and I'm doing rads right now. Nobody said anything about them being incompatible.

  • cm2020
    cm2020 Member Posts: 615
    edited December 2020

    My RO told me to stop taking it during radiation and for 2 weeks after. He said it was "probably okay to continue during radiation but would prefer to err on the side of caution and not take it". I was going to start it back the day after I finished radiation and his PA told me not to. She said that my body had been through a lot and to give it a bit of a rest (and then told me 2 weeks). Ask your RO and/or do some research if you aren't comfortable just stopping it for a bit. I want to say that I have seen others on the radiation boards also stop their AI during radiation.

  • Kanga_Roo
    Kanga_Roo Member Posts: 333
    edited December 2020

    HiNsbrown54,

    I have been on letrozole for 3 years now. When I first started I had terrible hot flashes which were always worse just after I took it. They would last for about 2minutes at intervals of about 30-40 min. I found if I took the medication a couple of hours after dinner, the worst of it happened at night and I quite often sleep through it.

    It is really important to let your onc know your if your side effects are affecting your quality of life, as there are many medications to help.

    It gets better :)

    Jackie

  • cm2020
    cm2020 Member Posts: 615
    edited December 2020

    Yes, like Kanga-Roo said, please let your dr know about side effects if they are affecting your quality of life. I take mine first thing in the morning and my hot flashes came fast and furious during the night, only they kept me up. I also have developed carpal tunnel syndrome as a result of Letrozole. My oncologist put me on Neurontin for the hot flashes (and I now stay dry all night long, it is heaven) and sent me to ortho for the carpal tunnel. Still working on dealing with the carpal tunnel. My ortho gave me splints and did steroid injections but, well, no consistent relief yet. Despite these issues, Letrozole is my "cancer be gone" pill and I will stick with it.

  • Nsbrown54
    Nsbrown54 Member Posts: 908
    edited December 2020

    Hi Kanga_Roo and cm2020 - thank you for the insight.

  • LillyIsHere
    LillyIsHere Member Posts: 830
    edited December 2020

    I take Letrozole a couple of hours after dinner and I have put the alarm on my phone to be exactly at 10 pm. Yes, I am a night owl :). A nurse told me hot flashes start 3-4 hr after you take the pill, that means I am sleeping or watching Netflix. Small waves of hot flashes may happen during the night because I don't feel them. From my own experience, I feel that taking the medication at the same time each day helps your body and mind to adjust better. Lots of water too, before, during, and after medication. In the morning when I wake up, I do stretches while still in bed. It does get better.

  • cm2020
    cm2020 Member Posts: 615
    edited December 2020

    LillyIsHere..That is interesting that you were told the hot flashes come 3-4 hours after taking the med. That has never been my experience with it. Like you, I take it at the same time each day. But I always take it first thing in the morning, yet my hot flashes would always become unbearable when I went to bed at night. I would wake up multiple times per night absolutely drenched in sweat. It was awful. I was prepared to just live with it, but my MO offered relief (bless her!). She told me that hot flashes are always worse at night. While I don't know if that is true for everyone, they certainly were for me. I take Neurontin every evening at 7 and no more night time hot flashes. I do get some during the day, but they aren't bad at all. I'm glad you are doing well on it. I agree that many of the side effects do get better. I wish the carpal tunnel would, but my MO said it won't, which is why she sent me to ortho.

  • Mskiles
    Mskiles Member Posts: 8
    edited December 2020

    Hello, all!

    I am finishing rads this week (hooray!) and will be starting on letrozole soon. Honestly, I’m a little freaked out by it. I already have arthritis in my hands, feet, and back, so I’m not sure if I can cope with MORE joint pain.

    I’m also almost always hot, so I dread the thought of hot flashes.

    And neuropathy? Noooooo! I had no idea this medication could cause that. I really feel like a full-on child/brat sometimes and just think, “But I don’t WANNA take it!” On the other hand, I don’t want cancer, so cue the big-girl panties. *sigh*

    Anyone on here have mild or no SEs

  • Nsbrown54
    Nsbrown54 Member Posts: 908
    edited December 2020

    Do the side effects improve after you’ve been on letrozole for a while? My nausea has subsided, but I’m still experiencing occasional headaches and bouts of general malaise, especially in the afternoon. I’m staying hydrated, drinking lots of water throughout the day. I start HP next week.

  • LillyIsHere
    LillyIsHere Member Posts: 830
    edited December 2020

    Nsbrown54, in my case the SE of letrozole had a peek of worst SE on 5-6 months and then start getting better. Lots of work on my end with yoga, massages, acupuncture, etc. I also learned that if you can take a nap or warm shower when you are feeling lousy helps a lot.

  • Mskiles
    Mskiles Member Posts: 8
    edited December 2020

    Thank you, Lilyishere

  • Nsbrown54
    Nsbrown54 Member Posts: 908
    edited December 2020

    Thank you LilyisHere.

  • cm2020
    cm2020 Member Posts: 615
    edited December 2020

    Nsbrown54....In my case as well, all of the side effects (except the neuropathy) went away after a few months. Listen to your body and give it what it needs. Hopefully you will also find that the worst is gone in a few months. Also I really hope you don't any any issues with neuropathy!

  • Nsbrown54
    Nsbrown54 Member Posts: 908
    edited December 2020

    Thanks cm2020. Unfortunately, I’ve been dealing with neuropathy since after my 4th TCHP. Some days are better than others (or maybe I deal with it a little better). Ugh

  • cm2020
    cm2020 Member Posts: 615
    edited December 2020

    Nsbrown54...Gosh I am so sorry you have to deal with it too. I can't sleep all night anymore due to the horrible pain in the hands waking me up. Ortho is sending me for nerve stimulation testing and, depending on what it shows, I am facing surgery. Cortisone shots didn't help. Sleeping in splints doesn't help. He wants to be sure where the pain is coming from given I am on Letrozole (and that caused it according to my MO and is also my belief since I had zero issues prior to this) and he says that is a bit of a "complicating factor". Is there anything at all that can be done to help you? Nerve pain is just a whole other level of miserable.

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