FEMARA

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  • gkbuser
    gkbuser Member Posts: 348
    edited November 2019

    yes I was on letrazole for about 1 1/2 years and during that time, had right and left hip pain, right and left elbow pain, back pain, rib pain , right shoulder and currently right hand pain. Been through 2 boughts of PT and a steroid shot to the shoulder. Also got an MRI of my spine. I was toally convinced it was all cancer. It wasnt! Psyched myself up each time and worried for nothing. I decided to live more and worry lesd. Hope this help ((😊

  • ChaCha57
    ChaCha57 Member Posts: 6
    edited November 2019

    I have recently broken out with red lesion like bumps on my hands, arms and legs. Saw the dermatologist and he thought it was Actinic Keratosis but it isn't, they biopsied. He said it wasn't normal, ha!, how often do we hear that? I've been on Anastrozole for 7 years, tried aromasin and Femara in the beginning but ended back on anastrozole. I have had terrible side effects when they changed manufacturers on me at the pharmacy so I have taken my first break from the AIs in 7 years (3 weeks off) and then I'm going to try the name brand arimidex to see if the skin issues will continue to improve. It has been getting much better in the last week but I have been using urea cream along with Shea butter and super mosturizers, spot treating about 50 or more of these lesions that have cropped up. I'm hopeful that the brand will make a difference as I'm too scared to stop taking them. 3 more years 😐 I am grateful to be here fighting the SEs everyday. Also, since taking the break I’ve been sleeping great and less irritable. Makes me sad to have to go back on anything but being high risk makes me regard the SEs as a nuisance I must live with

  • Moominmamma
    Moominmamma Member Posts: 40
    edited November 2019

    yes really really thin, receding hairline, light shines through the hair, it sticks out too. Like a baby chick. Blah. I wear wigs sometimes

  • wintersocks
    wintersocks Member Posts: 922
    edited November 2019

    Moominmama


    Yes exactly the same here, I used to have very thick hair. it makes me feel depressed

  • Taco1946
    Taco1946 Member Posts: 645
    edited November 2019

    I've just gotten a large hat collection. Not as hot as wigs although I do wear them for special occasions.










  • miranda2060
    miranda2060 Member Posts: 281
    edited November 2019

    ChaCha57, I had lesions on my palms. Switching to name brand Femara from generic letrozole almost completely eliminated the problem.

  • Magari
    Magari Member Posts: 354
    edited November 2019

    Doing Well on AIs thread:

    https://community.breastcancer.org/forum/78/topics/854403?page=40#idx_1189

    I was on Arimidex for about 14 months. It was causing previously resolved plantar fasciitis to flare, so I switched to Femara a few months ago. Minor joint achiness and some hot flashes, but SEs are manageable.

    I take Effexor ER 75 mg and melatonin. Naproxen as needed.


  • Moominmamma
    Moominmamma Member Posts: 40
    edited November 2019

    wintersocks I hear you. I have developed an obsession with other people's hair and how beautiful it is! Theres a tv commercial with a guy who is the same way about his hair loss - I find it very funny because I completely understand!. There are women who go bald - shave it all off - but I cant go there yet. Hats are a good idea. I am going to look at a better wig too as I cant imagine my hair will improve. I tell myself at least I am here even if my hair is not!!!

  • Mavericksmom
    Mavericksmom Member Posts: 635
    edited November 2019

    I have concerns that some with grade 3 tumors are deciding if they should go on the AI. Grade 3 is nothing to fool around with, take the AI!

    It doesn't matter how many take it without issues or how many have issues.

    If you have grade 3 and/or positive node(s) take it! Your doctor can help with side effects.

    I feel I am taking a chance by not taking it because I am grade 2! I made the choice based on other medical issues and beingnode negative.


  • Taco1946
    Taco1946 Member Posts: 645
    edited November 2019

    Hair is definitely an issue but I am developing a large hat collection. Always hit the thrift stores. I did think I looked pretty good bald but I haven't shaved it off yet although I threaten, especially right after I shampoo.

  • Abbidoodle
    Abbidoodle Member Posts: 41
    edited December 2019

    I will be receiving my last radiation treatment in 3 days, and my MO wants me to start on letrozole the next day. According to my biopsy results, my tumor was only 7% estrogen driven. I'm very concerned about side effects and I just wanted to join this forum to learn more about them. Any advice would be appreciated. Thanks everyone!

  • miranda2060
    miranda2060 Member Posts: 281
    edited December 2019

    Hi Abbidoodle. Congrats on almost completing radiation! I started on anastrazole and switched to letrozole, then to name-brand Femara (letrozole). I am tolerating it well. When I was on letrozole, I developed bumps on my palms -- almost none of that on Femara. Both the generic and name-brand were better for me in general than anastrazole. Keep an open mind about the drug -- you may have little or no side effects.

  • Abbidoodle
    Abbidoodle Member Posts: 41
    edited December 2019

    Thank you, Miranda 2050. I'm glad you're doing well

  • Nash54
    Nash54 Member Posts: 837
    edited December 2019

    HI Abbidoodle Ive been on letrozole for 5 years...I'll find out in Jan if I am to continue. I think the first couple of months there was some adjustment but overall have not had any major problems. I try to stay active...yoga mostly Best of luck!

  • KCKCKT5
    KCKCKT5 Member Posts: 16
    edited December 2019

    Good Afternoon,

    Wanted to reach out and see if anyone has been put on Metformin for high glucose and noticed joint pain better. I'm on femera and my glucose it high and I have heard it helps.

    Any feed back helps!

    Thanks

  • Taco1946
    Taco1946 Member Posts: 645
    edited December 2019

    I started metformin after about 8 months on AI's. Primary said there was evidence for joint relief and I was on the border line for high glucose. His comment, "I know you don't want to take another pill so it's up to you." Hard for me to evaluate how much it's relieved joint pain as mine were in pretty bad shape and I have had a knee replacement since BC. I have been able to lose a few pounds when everyone seems to be having trouble holding the weight down with these fun drugs so that's a plus for me regardless of joint pain change.

  • Annie60
    Annie60 Member Posts: 328
    edited December 2019

    I've been following and have learned a lot. Can someone explain trigger finger or in my case, it's my thumb. It locks up during the night and feels like it 'pops' back in place with I move it with the other hand. So sore and today swollen. What is the treatment? Also, what are you using for insomnia?

  • Magari
    Magari Member Posts: 354
    edited December 2019

    For insomnia, I take 5mg of melatonin before bed. My MO just prescribed low dose Gabapentin for my hot flashes, which I also take before bed since sleepiness is a SE.

  • Abbidoodle
    Abbidoodle Member Posts: 41
    edited December 2019

    Thanks for your input, Nash54. Happy holidays to you and yours and all my fellow breast cancer ladies@

  • miranda2060
    miranda2060 Member Posts: 281
    edited June 2020

    Has anyone else had skin lesions caused by letrozole/Femara?

    I had them a year ago, mostly on my hands, and asked my MO to switch me to brand-name Femara. It worked fine until just recently, when I got the WORST outbreak of itchy bumps, large and small, all over my hands (palms, especially fingers, backs of hands, wrists, all over), groin, torso, buttocks, legs). Mad itching that woke me in furious misery at night.

    I stopped taking the Femara and had a Zoom consult with my primary care doc. In the absence of other symptoms, and because I had them before, he agreed it was the letrozole, and recommended Benadryl and ibuprofen, which I'm taking. He said letrozole's the drug's half-life is at least 10 days, so could take time.

    Not sure where my AI journey will take me next. The angry red bumps/welts on my hands are unbelievably hideous. They are a bumpy mess. I hope they clear up soon.

    I sent my MO this paper about this particular side effect. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4129361/

  • Fairchild
    Fairchild Member Posts: 206
    edited August 2020

    Hey, folks, I'm wondering if any of you had muscle/bone pain severe enough to warrant discontinuing the letrozole. I've been on it about 2 years, without much in the way of side effects at all. But about 3 months ago I started having increasingly severe pain that is widespread, including in my lower back, hips, knees, elbows, hands and even the muscles on each side of my neck. It's gotten bad enough that I'm having marked pain at only 1/4th of my normal mile walk, and by the 1/2-way point, I thought I might not be able to make it back to the house. I finally decided to try a week off of it, and after only 3 days off, I can tell that this pain is much better. I guess I should tell my oncologist, but honestly, what's the point, because I know I need to take it for 5 years. I'm worried about breaking a hip, since my osteoporosis is pretty significant, so it scares me when my hips hurt that much when I'm walking. I know exercise is supposed to help, so I'm reluctant to stop walking. Is there any recommendation your doctors have made that really helped with this or is it pointless to talk with them about it? I'm 63, so this seems to be the drug of choice. Thanks!

  • PatsyKB
    PatsyKB Member Posts: 272
    edited August 2020

    I'm 69+ years old I've been on Letrozole (Femara) for over 2 years now and count myself among the fortunate as I have not had any discernable side effects. At one point last year, I developed a lot of hip pain in one hip. My first visit at that point was to my oncologist because I knew he would be able to help me figure out if this was Letrozole pain or something else. (It turned out to be something else in my case.)

    My advice would be to talk to your Medical Oncologist. There IS a point in doing so because there are OTHER Aromatase Inhibitors which might not cause the same pain side effects (if your pain is, in fact, due to the Femara). My oncologist had told me early on that we'd start with Letrozole and if I had negative reactions or side effects, we'd try another AI.

    As far as osteoporosis goes: I have osteoporosis and so when I went on Letrozole, my oncologist did a couple of things. He increased the amount of calcium I need to take each day. He also increased the amount of Vitamin D3 I need to take. He agreed that lots of weight bearing and resistance exercise is a necessity. And finally, he ordered twice yearly Prolia shots to reduce the bone loss caused by Letrozole. (Sometimes Prolia even reverses bone loss.) My yearly bone scans have either held steady or IMPROVED each year.

    In short - I urge you to talk to your oncologist. He or she is your go-to-cancer guru.

  • GeorgieGirlKC
    GeorgieGirlKC Member Posts: 132
    edited August 2020

    Fairchild, this is just an idea, you might check to see if the manufacturer is different on your latest script especially since you have tolerated the med for 2 years. Might be a slight difference between additives?? Hope you and your oncologist can figure out what is going on.

  • quinnie
    quinnie Member Posts: 221
    edited August 2020

    I am fortunate so far I have no joint pain with Letrozole. I have been on it only 2 months but have horrible hot flashes. My MO increased my lexapro but did not help. I know effexor can help but I do not want to change antidepressants. Does anyone know of any natural methods to decrease hot flashes? I guess I should tell my MO. I wonder if the other AL's have less SE's of hot flashes. I know hot flashes seem minimal but last night i didn;t get to sleep until 4 am. Fortunately i am retired and dont have to get up to work. The extremely warm weather here and wearing face masks don't help the situation

  • LillyIsHere
    LillyIsHere Member Posts: 830
    edited August 2020

    Fairchild, I start having muscle+ligaments+bone pain on my right side of the body in 6 months after starting letrozole. My MO recommended me to start Zometa for 2 reasons: 1. to protect bones in case cancer decides to go here, 2. several independent research, especially in Europe have shown to slightly reduce the recurrence. Took me a while to make up my mind and I did it last week. After a day of flu like symptoms, the rest of the days have been great! My joint+body pains are gone. I don't know why. I started letrozole with normal bone density. I assume lots of crap has happened since then. I'm showing my experience in case you want to ask your MO if Zometa would work for your osteoporosis and it may reduce the pains.

  • Lanne2389
    Lanne2389 Member Posts: 229
    edited September 2020

    Fairchild and LilyWasHere,

    I just finished my last Zometa infusion last week - I had them twice a year for 3 years, starting when I started Letrozole. My MO also said the evidence showed Zometa likely helped fight recurrence and protected against bone loss that the first few years of Letrozole can cause. I’ll have a bone scan in 6 months to see if there has been any loss. I had almost no side effects from Zometa, felt a little slow on day 2 but otherwise no problems.

    Lanne

  • Wheatscapes
    Wheatscapes Member Posts: 52
    edited September 2020

    Hello all - Started Letrozole a month ago. The first few days were OK, but I did have a bit of nausea and headaches, and nose bleeds. Weird. Then I had my final reconstruction surgery from BMX and it almost didn't happen because my blood pressure was incredibly high. Turns-out all my side effects were due to the Letrozole causing high blood pressure. Went off the Letrozole for a month and then started again - After only two days my blood pressure was through the roof! Leg and hip pain/spasms also bad. And nose started bleeding again. Mind you, my PCP had put me on a BP med. It seems the BP med is no match against the effects of Letrozole. Now my side effects are leg muscle cramps/pain, hip pain, neck stiffness, red eyes, and mega high blood pressure. Anyone have any advice on what tomdo

  • LillyIsHere
    LillyIsHere Member Posts: 830
    edited September 2020

    Wheatscapes, there are 3 types of AI, one of them is letrozole. Can your MO prescrible another one for you to use instead of letrozole?

  • Annie60
    Annie60 Member Posts: 328
    edited September 2020

    I was wondering if anyone here has developed tinnitus? The high pitched sound is driving me crazy. I've never had anything like this before and found some threads on different sites that some have developed this. If you have, has anything helped?

    Annie

  • cm2020
    cm2020 Member Posts: 615
    edited September 2020

    Annie60....I have been on Letrozole (Femara) since April and haven't had any tinnitus. I hope someone here is able to offer you some advice. I would say contact your MO about it. Good luck...I hope it goes away.

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