FEMARA

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  • grandma3X
    grandma3X Member Posts: 759
    edited December 2016

    I have been on Letrozole for 9 months now and have not experienced any significant SEs that I can directly attribute to the drug. My hair is thinner, but I think it was thinning before I started on letrozole. Likewise, I have a lot of stiffness in my fingers, but I had that before as well, and find that extended computer work makes it worse. The most irritating thing is searching for words during conversation. I have had this problem before and took Gingko, which helped a lot. Now that I'm on letrozole, I don't take Gingko anymore because I am afraid of interactions. Does anyone have an alternative remedy for this?

  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2016

    Hi ladies. New here..started Letrozole a week ago (with zolodex injections) and finally searched out this thread. I was on Aromasin/zolodex for 8 mo and was taken off due to severe joint pain. Hoping this AI will treat me better!

    Hi MammaRay, I'm guessing you tried taking with food to combat nausea (if this is cause). What time of day do you take it? Maybe right before sleep would help. Just a thought. My pharmacy paperwork does list upset stomach as a SE.


  • Novmoon
    Novmoon Member Posts: 77
    edited December 2016

    On letrozol for 2 months now. I take in evening during supper. Have joint stiffness which subsides with movement. Seems like my heartburn had increased, but my diet is not the best. Also have had chronic back pain for years which is worse at night. My only complaint is constantly waking up at night and difficulty falling asleep at night. This has been since surgery in July, so not sure if letrozol exacerbates. Starting exercise program this week and hoping for results regarding sleep, stiffness and weight gain.

  • april485
    april485 Member Posts: 3,257
    edited December 2016

    Novmoon, at first I was taking the AI at night figuring that I would sleep through the worst of the side effects. Instead, it kept me awake all night so I switched to the AM schedule and it is better for me although the joint pain is bad no matter when I take it. You might want to try taking it in the AM or even the early afternoon?

  • Jenwith4kids
    Jenwith4kids Member Posts: 635
    edited December 2016

    Novmoon; I take mine in the morning. I also had trouble sleeping in the year or two after treatment ended. Your issues might just be related to where you are at in the process and not necessarily due to the femara. I used to take a half an ativan before bed - or when I woke up in the middle of the night. I did that until I didn't need it anymore - that just kind of happened naturally...... now they bottle of pills lives in my nightstand drawer and I only take one or half or even a quarter of one if I need to - which is very definitely not often enough that it concerns me.

    Good luck!


  • grandma3X
    grandma3X Member Posts: 759
    edited December 2016
    I also have trouble sleeping. I can fall asleep ok but then wake up at 3 or 4 and can't fall back to sleep. I thought it was just anxiety but now wonder if its the Femara. I'll try switching to mornings next week while I'm off work and see if it helps.
  • lala1
    lala1 Member Posts: 1,147
    edited December 2016

    Shortly after all this BC stuff started, I saw a holistic doctor for all my issues, one of which was not being able to stay asleep. He suggested very tiny doses of melatonin, as in 0.3mg. I found some on Amazon and started taking it and it worked great for me, He said if you take too high of a dose, it will actually cause the opposite effect and keep you awake. I took it for a few months till I felt my sleeping habits were better and then slowly weaned myself off it. I now sleep really well. I usually get 8 hours a night and only wake a couple of times when I hot flash but just for a couple of minutes too cool off. So maybe that might help some here.

  • Chloesmom
    Chloesmom Member Posts: 1,053
    edited December 2016

    I started hair thinning 12 months after starting it. Now 6 months lTer have 1/3 the hair I had.just got a Capillus laser cap to see if I can help this out as I don't want to go back to a wig

    Cholesterol goes up from eating sugar not fat. The liver metabolizes it. I gained 15 lbs in the first 15 months on this stuff was starving all the time. Depressed as I went from a size 10 to 14

    Went on a ketogenic diet and lost the weight over the last 4 months Eating Irish butter, healthy fats and protein, bullet proof coffee. Almost no carbs No longer hungry. Finally back in my old clothes.

  • stellamaris
    stellamaris Member Posts: 384
    edited December 2016

    mine started coming out first couple of months. I have been on it 1 year now. The hair loss stabilized about 8 months in. Everything seems be growing slower- finger and toenails too. Weird

  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited December 2016

    I started hair loss about 12 months later. That's when the weight gain happened. High cholesterol etc.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2016

    I have been belching like crazy lately and just started Femara two weeks ago. Can this be a SE? It's not listed on pharmacy info. Sorry if already covered..Didn't go back through previous pages.

  • wintersocks
    wintersocks Member Posts: 922
    edited December 2016

    Thinkingpositive

    That's pretty much the same for me too. hair loss at the crown.

    Wildtulip, I have not had this SE.

  • april485
    april485 Member Posts: 3,257
    edited December 2016

    I do have much more gas than I used to Wildtulip and when I was on exemestane (aka Aromasin) I did not have this side effect so I think this side effect is the result of letrozole. I am not a gassy person normally but I do find myself doing things I normally did not before this drug. (burping and otherwise)

  • LARock
    LARock Member Posts: 229
    edited December 2016

    It's been well over a year since I've posted anything. Things have been pretty good post surgery, chemo and rads. I've been on tamoxifen for about a year and a half. Doctors also had me on Lexapro for the hot flashes. My insomnia got so bad that I weaned myself off that about two months ago and my sleep quality has improved immensely without any obvious increase in hot flashes. It probably helps that I live in Switzerland now as opposed to Los Angeles! My one complaint with tamoxifen is the weight gain - I'm 10 lbs over my regular weight and can't get it off. For a while I blamed this on the Lexapro as well - I simply didn't have the energy or desire to be my normal, active self. I'm now back to running 25 miles a week and Pilates twice a week but I can't drop any of this weight. I was very excited this week that my oncologist confirmed I'm menapausal (had a hysterectomy 19 years ago) and switched me to Femara. At least I was until I started reading about the SEs on this blog. ☹️ Yesterday was my first day on it and by evening I was nauseous enough that I had to leave a holiday dinner early. I'm training for the Barcelona marathon in March and am really worried about the reports of joint pain. I wonder if I shouldn't seek out a new oncologist and consider another drug?

    Thank you for all the posts out here. This community has been very helpful at numerous stages of this fun little BC adventure.

  • KBeee
    KBeee Member Posts: 5,109
    edited December 2016

    All of the AIs have joint pain as a potential side effect, but not everyone has side effects

  • stellamaris
    stellamaris Member Posts: 384
    edited December 2016

    so true, I have no joint pain. My worst SE is urinary frequency and urgency. My next stop is to a urologist. I am just starting to get nervous about it and need to rule out the nasty alternative.

  • dtad
    dtad Member Posts: 2,323
    edited December 2016

    stellamaris...not sure if I already told you this but urinary problems are common while on anti hormone treatment. Its stems form the lack of estrogen. So if you don't have a UTI, you might have interstitial cystitis. Good luck and keep us posted.

  • stellamaris
    stellamaris Member Posts: 384
    edited December 2016

    thanks Dtad, I will. Merry Christmas to everyone and wishing you all a much better 2017!!!!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2016

    MammaRay, SO sorry. It must be very distressing. Hugs!!

  • Faith-840
    Faith-840 Member Posts: 995
    edited December 2016

    I'm also having lots more urgency and frequentcy lately. No pain, just the feeling of always having to go even if I just went. I had some of this before my recent recurrence of what is now MBC but never quite this bad. I guess I will call the doc's office and see what he recommends.. I sure hate to add another medication to my regimen.

    Mammaray, I'm also sorry about your sudden large hair loss. That is just such an awful feeling., I cried for days when I went bald 25 years ago from Chemo. I hope it is a one time thing for,you. It seems like my hair has finally stopped falling out so much (knock wood) after a year on these drugs for MBC. Of course it had gotten thinner as I got older but now it's worse. The shedding is better but the hair itself is very fine now. Just no body! I'm trying Nioxin products and they seemto help a bit to make it look thicker.

    Wishing everyone a healthier happy 2017.

    Faith (in the future

  • Chloesmom
    Chloesmom Member Posts: 1,053
    edited December 2016

    The hairdresser said hair goes in 4 month cycles. If you are super stressed 4 months later your hair shows it. Likewise it takes 4 months for hair and nail supplements to show they are working. Hang in their ladies. I have 1/2 the hair I had a year ago, but glad to be alive

  • KatieMarie
    KatieMarie Member Posts: 3
    edited December 2016

    hi. I see your post about losing your hair was in 2014. You said that it goes in four months cycles, about how one's hair falls out from the medicine and/or stress, according to what your hair dresser told you. (My sister has always said that too). You said you lost about half of your hair. I have lost about half of the thickness that I used to have. It's wicked depressing. Major receding hairline. I just wanted to ask you - did it ever grow back when you finished the medicine andor treatment?

  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2016

    Katie, Chloesmom's post was just an hour before yours. I think you saw she joined in 2014. That has thrown me off before too! Although she may still have input, I wanted you to know the post was current. Best wishes!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2016

    Iala1, I just read your post about melatonin and I'm passing on to someone. Just wanted you to know the info was helpful!

  • Meow13
    Meow13 Member Posts: 4,859
    edited December 2016

    Yes you are right bosum my onco also confirmed that no benefit to doing more than 5 years on AI. There was some news earlier this year but they just came out reversing the previous finding.

  • wintersocks
    wintersocks Member Posts: 922
    edited December 2016

    My BS also says 5 years only on Letrozole and the other 5 on Tamoxifen. I am hoping that the thinning hair will improve once off Letrozole. I don't know if hair loss happens on Tamoxifen?

  • Meow13
    Meow13 Member Posts: 4,859
    edited December 2016

    My onco suggested I could go on tamoxifen but really left it up to me. I am not doing it. It carries a risk with it and I don't see any evidence suggesting benefit. My onco agrees. Sometimes going off of treatment is too frieghtening for some but not me.

    Wintersocks, our situations are different I think I would continue with tamoxifen if I were you. My SIL was one of the very unfortunate few people that got GYN cancer from tamoxifen. Atleast that is what her doctor told her.

  • zarovka
    zarovka Member Posts: 3,607
    edited January 2017

    Mamma Ray. We're all tired. Go ahead and scream. Family is wonderful but they aren't going through this.

    >Z<

  • Tammy_M43
    Tammy_M43 Member Posts: 980
    edited January 2017

    Zarovka, how true! Thanks why where here with people who understand

  • Meow13
    Meow13 Member Posts: 4,859
    edited January 2017

    mammaray, tamoxifen is used for premenopausal women but also postmenopausal women too. AI drugs are for postmenopausal women. Hormone therapy can be tamoxifen alone, tamoxifen and AI, or AI alone. My onco says no more than 5 years on AI, you can change to tamoxifen for an extra 5 years.

    Each situation is considered before automatically taking either one. Tamoxifen has a risk of blood clots, possible strokes and in rare cases cancer. AI also have risks of bone loss and other problems.

    What was intriguing to me was being er+ and pr- AI drugs are more effective than tamoxifen.

    This stuff may be good at fighting cancer but otherwise not too great on your health.

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