Letrozole(femara), anti-depressants, depression

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I tried searching the forums, but it frustrated me so I'm just jumping in with a a new topic. I've been on Letrozole since mid August. Since that time, I've had the severe sweating (I am also overweight), depression seemed to worsen (event tho I've been on an antidepressant for years), my hair is thinning even more and now I'm having horrible muscle pain.

Just wondering if any of this sounds familiar to anyone else? I saw my oncologist in November and mentioned the depression issue specifically. I was in very bad shape - crying for days at a time, no energy, couldn't get out of bed, etc., etc. He said he'd not heard of that with Letrozole, yet I did a little research and saw that it is a side effect.

He had told me that losing my hair wouldn't be a problem, but it is thinning very noticeably now. I'm going to look into getting a hair piece or something it is so bad.

In the last couple of weeks I have had severe muscle pain in my arms. The last two days, my thighs felt as if I'd tried running up and down flights of stair. I had trouble standing up earlier today. The muscles in my upper arms tighten and I'm in extreme pain. I regained full range of motion after the bi-lateral mastectomy - this pain is on the outer arms, if that makes sense.

I want to quite taking the Letrozole! I plan to call my regular doctor and the oncologist this week to discuss further, but am wondering if any of this sounds familiar? I find it hard to believe that all these new health problems just came out of nowhere after starting Letrozole.

Comments

  • dtad
    dtad Member Posts: 2,323
    edited March 2019

    Hi there. So sorry you are suffering from side effects of Lettrozole. Of course we have all heard of these symptoms being a side effect of anti hormone treatment! Your MO is doing you a disservice by denying it. What really scares me is his denial of the depression being a side effect. Depression is miserable and can have very dangerous outcomes. To start I would find a new MO who will work with you to find a solution. IMO the compliance rate would be much higher than 40-50 percent if these docs would be open to discussion about the side effects. Many have found changing to another anti hormone helps. Good luck and keep us posted.

  • Jor
    Jor Member Posts: 10
    edited March 2019

    Thanks for the response dtad. When I saw this oncologist 21 years ago, I felt he gave me tons of information and had no complaints. I would read about other people's complaints about their MO and was so thankful mine was not that way. This time around - not sure what has changed -, but I'm frustrated.

    I have the exchange, implants, being done 3/22. I'm going to experiment and not take the Letrozole for two weeks before the surgery instead of one. If I feel even the slightest bit better, I'm making an appointment ASAP to discuss other options. My quality of life is important (I never realized just how much). I will switch to a different med, but I will also not hesitate to stop completely if I am so uncomfortable. Talked to a woman at church yesterday and she tried many options and is now currently taking no hormone suppressants. I would be okay if it came to that as well.

  • GrandmaV
    GrandmaV Member Posts: 1,267
    edited March 2019

    jor, I can so relate. I've been on Ai's for 7 years. I started having really bad side effects (especially knees) at 9 months. Had to walk with a cane. I wanted to quit. Onco talked me into staying on a couple more months cause my body would adjust and symptoms would get better. He was right. After a couple more months the pain was tolerable and I no longer needed the cane, but took lots of Advil, Tylenol, or aspirin. I rotated them every couple of days. I've had this all this time plus fatigue. My legs hurt all the time now. He let me have a month break last November and wanted me to try a different Ai. I didn't start to improve until the 3rd week. Then after a month started a different Ai and now I feel worse then before, with pains in back shoulders and hands along with legs. I think I'm at the end of my treatment. I see onco in April and will stick with it at least til then. Hang in there for a while longer, your body may adjust to a point you feel you can you can do it. Also don't think of it as a 5year, or 10 year treatment. Think of it as a month or two and then re-evaluate. That's what's got me to this point. Same way you eat an elephant, 1bite at a time.

  • Jor
    Jor Member Posts: 10
    edited March 2019

    My depression has gotten to the point where I only want to die. I have stopped the Letrozole. What 'life' I had was not living. I slept for four out of five days.

    I called the office and I'm sure the oncologist is going to try to convince me to go back on. The depression has pushed me to that decision. Who can 'live' wanting to die every day? I'll take the risk of the cancer returning.


  • tinker-bell
    tinker-bell Member Posts: 62
    edited March 2019

    I am so sorry you’re feeling so bad. I hope your oncologist can find some solution for you. Have you tried anti depressants? They helped me after diagnosis and during treatment.

    I think I’ve reached the point where the side effects are starting to get me down. Achiness, fatigue and weight gain. I’m on Tamoxifen and objectively, it’s not that bad - but my tolerance and resilience are low. I’m doing an MA and finding it quite challenging and all I want to do is tell anyone who disagrees with me to f&£k off! I’m exercising 2/3 times a week but can’t keep my mood much above gloom and fury.cant decide if I should go back on Escitalopram or try more therapy or what. You’re not alone

  • Jor
    Jor Member Posts: 10
    edited March 2019

    I've been on antidepressants since my second child was born (almost 25 years). I have tried switching antidepressants more than once. Tried again with this issue and I am worse than I have ever been. Slept four of the last five days and seriously was trying to find a way to kill myself. The only reason I hesitated was because I didn't want to be found alive. I wanted to be sure I was gone and I couldn't be sure.

    I know these drugs are important. I took Tamoxifen with no issues except hot flashes when I was 36. At 56 I cannot have a life with Letrozole. And I am not sure I'm willing to try anything else. Not with how frightening an experience this has been. I have been overweight since before my first cancer diagnosis, but have gained more. I can deal with everything except this horrible depression. Wanting to die every day is awful.

    My history isn't here but I had Stage 2 at age 35 (1997) with a lumpectomy, chemo, radiation and Tamoxifen. Stage 2 in same breast (right) in April 2018. Double mastectomy still working on reconstruction.

  • diannemc1957
    diannemc1957 Member Posts: 16
    edited March 2019

    You lasted longer than I did...I was on anastrozole for 1 1/2 months and was in such a awful state of mind.I had to stop.. Anxiety and depression was awful..I wanted to die...it was so bad...I had mild OCD and it caused it to become a monster! I wish I had been told it could cause depression.. I am still fighting the effects of it...I would have never taken it.. you are not alone...I am still trying to find the right anti-depressant to help with the OCD and depression.. I am taking xanax daily for the anxiety...just awful

  • diannemc1957
    diannemc1957 Member Posts: 16
    edited March 2019

    You lasted longer than I did...I was on anastrozole for 1 1/2 months and was in such a awful state of mind.I had to stop.. Anxiety and depression was awful..I wanted to die...it was so bad...I had mild OCD and it caused it to become a monster! I wish I had been told it could cause depression.. I am still fighting the effects of it...I would have never taken it.. you are not alone...I am still trying to find the right anti-depressant to help with the OCD and depression.. I am taking xanax daily for the anxiety...just awful

  • dtad
    dtad Member Posts: 2,323
    edited March 2019

    Jor...find a new oncologist ASAP! I know that's hard to do when you are depressed and unmotivated. Is there anyone in your life that can help you? I've been where you are from a drug, its hell! You need a MO that will work for you. Right now your depression/suicidal thoughts need to be treated. You cannot work with a MO who denies all the side effects of aromatase inhibitors! You said you did well on Tamoxifen. Once your depression is under control, there is no reason why you can't take it again. Yes, aromatase inhibitors might work a little better now but you also need to be alive and not have to live with debilitating depression. My best advise is to tell someone, anyone what you are going through. You cannot do this alone. We are here for you, but you need more. Good luck and please keep us posted.

  • pippy1963
    pippy1963 Member Posts: 36
    edited April 2019

    Jor I am so sorry that your going through this. Does your cancer clinic have any emotional help or some sort of help? You should not be going through this alone. I am newly diagnosed with lung mets. I have been on letrozole for over a month now my side effect have been muscle crap that hurt mostly at night waking me up in extreme pain. I have been using CBD roll on that seems to help. I have been crying more than i have cried in the last 40 years I just thought it was because the reality of my mets are setting in. I'm tired and really have no energy to do this but I have no choice. I have decided to change how I eat. I am buying a juicer and eating organic. I have nothing to lose. I love my coffee and my sweets but I love my life more. I really hope that my dietary life change will make a big difference in every aspect. please Jor get the help you need and dont stop until you find it.I hope you have people who are supporting you.

    pip

  • KCMC
    KCMC Member Posts: 208
    edited April 2019

    I was on Tamoxifen for a year and was switched to Anastrozole in February. Within a week I was severely depressed. I called my psychiatrist and he upped my anti depressant to no avail.

    Completely awful couldn’t get out of bed, crying for hours at a time. I felt worse than I was first diagnosed. I have dealt with depression for over 25 years and was pretty proud of myself the way I handled my surgery treatments etc. I was also doing good on Tamoxifen. I went in to visit my psychiatrist he called my Oncologist they both decided to take me off anastrozole and put me back on Tamoxifen. Within 4 days I was back to normal. I may try again in the future. This was definitely the Anastrozole no doubt about it. I just can’t believe how fast my mood changed. Feeling good now

  • Jor
    Jor Member Posts: 10
    edited April 2019

    Thanks for the support all. I stopped taking the Letrozole a few weeks ago and immediately felt better. I am meeting with my oncologist next week and will definitely be giving him an earful! I am feeling much, much better but still not 100%. Once I get a few more things under control (hopefully only one more surgery, and a few other non cancer related appointments), I am going to find a psychiatrist again and see about what else can be done. My regular doctor is awesome and we tried something but she recommends a psychiatrist and I will do that. I am no longer suicidal just still sleep and lack motivation.

    I appreciate all the advice and it does help that I'm not alone in this. My onocologist made it sound like he'd never heard of the depression being a side effect!


  • DaraB
    DaraB Member Posts: 945
    edited June 2019

    It seems many of us have the similar reactions. I've been on letrozole for 2 1/2 years. Anastrozole gave me terrible joint pain so switched to letrozole. That's not too bad now, but the sweating is downright embarrassing! When I get warm, sweat literally drips off my head, plastering hair to my head, and gets in eyes. Has anyone been given or found anything to help with the sweating issues? During the night, I'll have to take a towel to my head, and change a t-shirt as it's dripping wet! Any I never even had hot flashes during menopause! Any help is appreciated. Thanks, Dara

  • wintersocks
    wintersocks Member Posts: 922
    edited June 2019

    Dara

    Wearing cotton/linen all clothes where possible as advised by my BS. Carrying around cooled and compressed water sprays help me and carrying absorbent tissues to pat myself down with where I can. I was on fluoxetine that was supposed to help with the sweating. I weaned myself off this as I felt it was not really helping with either the depression (on it over 8 years) or indeed the flushes.

    I am on Letrozole nearly 7 years and am desperate to stop it but know there will be worse if I do. I am unsure whether to switch to Arimidex or Tamoxifen because of resistance. so tired of it all as I am sure we all are.

  • Jor
    Jor Member Posts: 10
    edited June 2019

    I didn't realize I hadn't given an update on my situation since I saw my oncologist! I was all upset and mad at him for no reason. The minute I explained TO HIM (not his nurse) what was happening, he immediately said "we can't have you feeling like that". He was very accommodating, yet wanted to make sure I was still doing the best I could to avoid a recurrence. I switched to Tamoxifen which I took for five years when I first had cancer treatment in '97. I have had no issues. It may be giving me more hot flashes, but since it is now summer and warmer weather I can't be sure that it is truly from that.

    Dara - I had those intense night sweats as well. Since it was winter time, I would open the window and stand in front of it with the 20 degree temps to cool me down. It still took at least 5-10 mins. I wish I could give you more advice on that, but I never found anything that really helped.

    I feel badly that I misspoke about my oncologist in this post. He really was very caring about getting me switched to something else. I had myself worked up over something that didn't happen (I tend to do that, you'd think I'd learn).

    Hoping that cancer will be eliminated from this world SOON.


  • sweetp6217
    sweetp6217 Member Posts: 365
    edited July 2019

    Dear Jor and everyone here,

    Wishing we could get together to chat and I know how that feels. Can any of you recall what the odds were of recurrence of cancer is if not taking Letrozole (for 5 years)? My oncology team wants me to seek help with social workers, psychologists, etc. In other words, they don't blame the medicine. I'm due for an appointment with them, but I feel like I want to switch MOs. In the past, they poo pooed the side effects of chemo before I began treatment and I had most of those usual side effects. Now that I've taken the medicine for a year now, I'm wondering why they don't link my emotional experiences to that medicine. By the way, I get warm, turning the fans on at work and at home, numbness in the feet, weakness in the limbs, sometimes afraid to go down stairways.

    My worst issues are tinnitus and lack of sleep most nights. For tinnitus, a specialist has me using a white noise app (with a blue tooth speaker) at night which sometimes works. I also wonder if the tinnitus is what is "driving me crazy" at times.

    P.S. Thank you all for posting. You are the best!

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