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Fitmom04 Member Posts: 40

I've completed chemo and radiation but when I met my MO & RO in September they both said that hormone therapy wasn't an option as my hormones were Estrogen 3% positive and Progesterone and Her2 negative. Now, they are both telling me I should do Letrozole. I've heard many horror stories from it. Has anyone taken it and how did it go? My Oncotype was 32%. I spoke to my RO on Tuesday after my last radiation treatment and he said that my cancer was very aggressive and I should do it. I just don't know what to do. ARGH!!!!!


  • exbrnxgrl
    exbrnxgrl Member Posts: 4,749
    edited March 2023

    Has anyone taken it? My dear, this is a breast cancer forum and letrozole is a well established drug that has been used for many, many years. Let me address “horror” stories. They do exist and some women have found the side effects to be intolerable. These are the folks who will post on this forum and other sites about the negative experiences they have had. Those who experience few to tolerable se’s rarely post because it’s not an issue for them. I have been on letrozole, anastrozole and Exemestane (one at a time!) fir over 11 years as I am stage IV and AI’s have been my almost sole tx. I do have some joint and bone pain which I manage and lead a fairly normal life. So while true that it becomes impossible for some to tolerate that is not the case for most. Unfortunately, there is no way to predict, in advance, how this class of drugs might affect you.

    I think you need to speak with your mo about why they said no AI’s earlier but are now recommending them as I think they hold the answers to that. These messages boards tend to lean heavily towards those who are having issues or side effects from treatments and/or procedures and those not having issues are sorely under represented (as most message boards of this nature do). IRL, I know many women who have or are currently taking AI’s. Most, not all, actually tolerate them well.

  • sarahsmilesatme
    sarahsmilesatme Member Posts: 53
    edited March 2023

    Bohartois; I’m on my 3rd year of Letrozole; and am tolerating it well. I categorize my side effects as “inconsistent and somewhat annoying.” For example; I have sporadic instances of calf and arch cramps; intense sweating, joint pain and stiffness -never all at once and not day-after-day. My side effects come and they go, and blessedly, they are not severe. My thought is that Letrozole is no different than any other drug, you won’t know your side effects until you start the drug. Good luck in your discussions with your MO and any future treatment.

  • moderators
    moderators Posts: 7,913
    edited March 2023

    Hi Bohartis,

    Letrozole is also known as the brand name Femara -- There's a very well-established thread here on Femara where members share their experiences. It's sure to be helpful, in addition to the responses you receive here.

    We hope this helps!

    --The Mods

  • wren44
    wren44 Member Posts: 7,865
    edited March 2023

    I've been taking Letrozole since May with no side effects at all.

  • kaynotrealname
    kaynotrealname Member Posts: 369
    edited March 2023

    I was very nervous with taking endocrine therapy and started an ovarian suppressor and letrozole in November 2022. No huge side effects except what I consider normal menopausal ones which are easily worked around. My oncologist told me that in her experience people who lead an active lifestyle normally do very well on them.

  • lef
    lef Member Posts: 32

    I had also heard many horror stories about Letrozole, but I've now been taking it for 3 months and, so far, no problems.

  • ruthbru
    ruthbru Member Posts: 46,930
    edited May 2023

    I was 11% estrogen positive; PR negative, Her2 negative. I took Arimidex for 5 years (as was recommend). Other than being a little 'creaky' in the beginning as my body adjusted, I had no negative side effects. Naturally, it is people who DO have problems who are talking about them. The others are out living their lives. My thought was that, since the biggest chance of recurrence happens early on, I wanted to give it my best shot of preventing that from happening.

    *and after giving it a good shot, if you find that you do have bad SE's, you can always quit.

  • gailmary
    gailmary Member Posts: 426

    I've taken it twice. The first time se were manageable aches and pains. After 3 yrs insomnia. Then 4 yrs later I took it again with no SE till insomnia again after 2 yrs. Always been insomniac but lack of estrogen made it worse.

    Look at it this way. Would you rather maybe deal eith side effects or maybe cancer coming back.

    Good luck.

  • wondering44
    wondering44 Member Posts: 252


    I used Letrozole and found it not tolerable to my lifestyle. I, too, fretted over the suggestion of an AI after reading about the SEs. However, I read on these boards that any treatment affects each patient differently, and by reading this, I learned to adjust–trial and error. I had to learn to take it one day at a time and figure out how to recognize what worked or did not work for me. Exbrnxgrl stated it perfectly that there is no way to predict how a drug may affect you in advance. The only way to know is to jump in and get your feet wet.

    While I was unsuccessful with Letrozole and was at a point where I didn't want to use an AI, I didn't give up. I was switched to Exemestane, which has given me almost zero side effects except joint aches. I work with a Chiro and Ortho for help with joint aches.

    There is more than one AI option or Tamoxifen. You can discuss all the options and concerns with your MO to make a plan to switch your AI ahead of your start if you begin to experience intolerable SEs. Unfortunately, you won't know your SEs, if any, until to try the AI.

    I read the horror stories, too, and was terrified to take it. Now that I am on one that works well for me, I don't post the positives. Maybe someone could start a thread for "positive AI results" to share too.

    I wish you luck moving forward.