letrozole side effects

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bluepearl
bluepearl Member Posts: 961
edited November 2015 in Hormonal Therapy - Before, During, and After

I just switched from tamoxifen (no SE) to letrozole and notice wrist pain similar to carpel tunnel that goes up my arm. Is this a common sign and will it go away after a few months? If so and if not, I am thinking of going back on tamoxifen.

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  • tomo68
    tomo68 Member Posts: 1
    edited October 2015

    Hi Bluepearl

    Just wondered why you switched if you had no SE to tamoxifen? I have been taking for 4 months and the SEs are pretty bad. Hot flashes I can deal with now 11-12 per day, I don't know if that is normal or not as don't know anyone else taking it. It is the insomnia that is killing me and making it difficult to cope with the irritability and fatigue i'm left with after treatment. Due back to see my Oncologist in a month so will discuss an alternative treatment.. Injection in the stomach every month I think I remember her saying was the only other option!

    Feeling stressed :(

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  • bcincolorado
    bcincolorado Member Posts: 5,758
    edited October 2015

    I too just switch as well at the recommendation from oncologist. I was on tamox for 5 1/2 years. He said that tamox can cause blood clots and uterine cancer which are side effects that can kill you. Femara worst ones are bone loss and cholesterol and both can be treated. So far my worst effects are a metallic taste in my mouth and some dizziness. I don't notice hot flashes being worst at all. I split my tamox dose at 7 and 7 at night so now am doing Femara at 7 at night so maybe I am sleeping through some of the hot flashes.

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  • Kicks
    Kicks Member Posts: 4,131
    edited October 2015

    I have been on Femara/letrozole for 5 1/2+ yrs. Before going on it I was osteopenia and now osteoporosis but from my family HX of it, was to be expected anyway - Fosamax is keeping it stable.

    I have never had a 'hot flash' ever - not even when I went through natural menopause at 44 (19 yrs before my IBC DX) - still haven't in yrs on Femara/letrozole. My chloresterol is still the same it has been for yrs - total is high but LDL is low and HDL is high so nothing to worry about.

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited October 2015

    bluepearl - I switched in April and I've been having that wrist pain. I now sleep with a wrist splint. It helps a lot. Take care!

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  • bluepearl
    bluepearl Member Posts: 961
    edited October 2015

    Thank you for your advice. I have the wrist splints too and the shoulder/arm pain is receding as long as I don't lift anything too heavy. I have two and a half boxes of tamoxifen just in case...on stand by...until I see doctor...if I have to....but so far, so good. I started aspirin therapy too, using a coated slow release one and so far no stomach problems....aspirin is such a good med and maybe that is helping the joint issues. I hope to be able to keep on it as it thins the blood a bit and that could help with these meds too. Exercise really helps too. I am really good after my big walks (6km) and can't do my daily walk because they are putting in a bicycle lane.....how nice of them to consider my needs for this lane for my bike and my nikes! I was thinking of getting my ovaries removed too.....had breast cancer twice and my sister has stage 4....but docs aren't on the same page with that but I think I will persist.

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  • cbrogdon
    cbrogdon Member Posts: 12
    edited October 2015

    Bluepearl, Thanks for starting this post for letrozole side effects. You hang in there and definately talk to your oncologist about goin back to tamoxifen, if it is an option for you. 

    I would love to hear how ayone is coping with the side effects for the long term.  I have similar joint issues and think exercise really helps too. Personally I am finding that the longer I am on this drug, the worse I feel.  Hot flashes, fatigue, insomnia, total body aches all the time, and now osteopenia.  Some days I can't hardly walk because my hips and knees hurt so bad.  What do others do to help ease all this?

    Tomo68, what is the injection in the stomach you mentioned?  I feel your stress and want to stop but I know this drug is working to keep my mets from progressing at this point so stopping may not be an option unless there is something new and better out there...

     


     

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  • bcincolorado
    bcincolorado Member Posts: 5,758
    edited November 2015

    My dizziness stopped after switching from Tamox to Letrozole.  Still hae some pain in the bones.  Trying to move more at work too and get up from my desk at least twice an hour to walk down the hall at least.

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  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited November 2015

    Has anyone here found medical marijuana to provide relief from bone, joint and muscle pain of Femara? It just became legal in IL, and I am wondering if I should ask for an official recommendation for it (required for the application for a med-mar card), even though I am not getting chemo. I'm not crazy about smoking it (I have asthma, though some say it relieves that too), and worry about the unpredictability of its effects when ingesting it instead. (I understand the extract and oil taste awful). Not interested in enhancing my appetite, as I can definitely stand to miss a few meals. But if it can help with sleep and take the edge off bone pain, I’d be interested in having some on hand (lawfully) once I start Femara should I encounter those SEs.

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  • lisa137
    lisa137 Member Posts: 569
    edited November 2015

    I've been on letrozole for about a year now. My experience has been that the side effects seem to roam around a bit. This week it's a particular joint in my right thumb. For a couple of weeks before it was my left foot. Some days it's my right shoulder, other days it's my right elbow. One week my hips will bother me, and the next week they'll be fine. And yes, sometimes it's one, or both, of my wrists.

    I do get hot flashes, but I started getting those while I was still on chemo, and they got worse after my hysterectomy, so I can't blame those on letrozole.

    I don't have insomnia exactly, but I do go through phases where night after night I'll ALMOST fall asleep, and then suddenly be wide awake for no apparent reason, and it will take me a while to get sleepy again. I hate those....but, it does come in phases, so I'll go weeks without having that happen, and then it will come back for a week or two.

    All of it seems to have gotten better in the last three months or so though, really. Exercise does help, but at the same time, I find that if a particular joint or limb or whatever is really hurting, resting it for a few days if I can helps it to get better more quickly.

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  • bcincolorado
    bcincolorado Member Posts: 5,758
    edited November 2015

    Hi:

    In Colorado medical MJ has been legal for a very long time. Now recreational is as well. If it is medical though you don't have to pay the taxes (very high) when you purchase and you are allowed to grow at home (under locked area) up to 4 or 5 plants I believe. My husband who has numerous health issues had it actually recommended to him for his pain. I know there are different strains. He did try the edibles but they did not do anything. He found that if he smokes though a little before bed he can at least get the pain to subside enough to allow him to rest well at night. I would definitely say to talk to your docs and see what they think first if they would recommend it for you.

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  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited November 2015

    lisa137,

    We must be twins! I also have the joint pain move around. Sometimes my knees hurt, sometimes my ankles or feet, then the left hip, then the right elbow, the thumbs.... So weird. But I do feel better with daily exercise and I started taking my statin at at a different time of day from Letrozole. That helped a lot with the joint pain. When I get up in the morning, my husband hears me say, Oo, oo, oo, oo, oo all the way to the kitchen for coffee. LOL

    I also have the form of insomnia I call broken sleep. Sleep well from 10-midnight...then wide awake until 2AM. I take my Letrozole in the morning because taking it at night caused me to be unable to get to sleep at all. I have been taking it for 2 years now, so maybe I will start taking my meds at night and see what happens.

    I do not have hot flashes except at night during that wide awake period. I wonder if that is what is causing me to awaken.

    The other SE I have is the inability to lose weight no matter how many calories I burn in excess of taking in. Before BC, I could easily lose that extra holiday pound or two by upping my exercise or cutting out a few goodies. I am too chicken to take a Letrozole holiday to see if the weight drops. Does anyone else notice this?

    Because all medications have SE, I report these to my onc and internist but since they are not affecting my ability to function yet, I try to minimize them as I do not want to take more meds.

    MsP



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  • cwayman650
    cwayman650 Member Posts: 102
    edited November 2015

    I'm so glad you started this post. I have been on Femara for about 8 weeks. I flunked out on Aremidex and Aromasin due to the side effects. I have been having wandering pain also. Yesterday tho, it was at it's worst in my knees. I just wanted to cry. It didn't matter how I stood or sat, It just hurt. (I was at work). The night before I took a Norco to try to help it. It didn't touch it. When I got back up for work, (I work 12 hr. night shift), it hurt so bad. After I got to work I took an 800 motrin. That helped for a few hrs. When it came back it wasn't as bad. The few days before that, I was walking like Frankenstein when I got up. My knees, ankles and hips didn't want to move. Has anyone else had their heels hurt from it?

    Carolynn

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  • ml143333
    ml143333 Member Posts: 658
    edited November 2015

    I have been on letrozole for about 6 months. 

    My SEs are also wandering so it is comforting to know it isn't just me.  My knees almost always hurt but only when walking or going up and down steps.  The other joint aches and pains are in my hips, feet, ankles, wrists, elbows and shoulders.  They do wander so it is rarely that they all hurt at the same time.

    After I have been sitting or at night, if I get up, my feet kill me and I have to walk a bit to get them going I guess.

    I have yucky hot flashes, but they have gotten better lately.  When I first started, they were horrible and embarassing.

    I also have the inability to lose weight since being on letrozole.  No matter what I do or eat, the weight won't come off.  I am on the waiting list at the hospital I work with for non-medical weight loss.  I have spoken with the doctor and although I am overweight, I am not categorized as obese.  She says that once I can get in the program, she will know from the blood tests and metabolism testing how she can help me. 

    I fortunately, have been able to sleep better since on letrozole.  I never have slept well even before breast cancer and medication, but there are nights now that I actually sleep through the night.

    I take my letrozole in the evenings after dinner.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited November 2015

    I had a lot of joint pain and had difficulty losing the weight gained from chemo and AIs, but about 18 months ago I went on an anti-inflammatory diet and had drastically reduced joint pain, finally could lose the 22 extra lbs. (with no exercise due to three back-to-back surgeries), and had reduced intensity hot flashes.  I had a hyst/oophabout 15 years ago and had a hot flash an hour, around the clock, since then.  Chemo and AIs did not make it worse, or better.  This diet is hard, not gonna lie, but it did work for me - completely cut out sugar, dairy, gluten, corn, peanuts, soy and eggs.  This is a food elimination diet, so you can add things back in, one at a time for a week, to see if you are sensitive to them.  I did add eggs back in, but still eat them sparingly.  The theory behind this is that inflammation is keeping you from losing weight - once I started on this I lost a pound a week for six months straight, and ended up just under the weight I was at diagnosis.  It is the only thing that worked for me, including 1200 calories a day with a daily 5 mile very brisk walk, which had previously worked with no problem - I lost zero pounds doing that this time.  I also found that changing the manufacturer of my generic made a difference - I had some issues with trigger thumb initially on one brand, switched to Arimidex for 18 months and had trigger ankle, toe and another finger, so switched back to Femara.  I ended up with a different brand and have tolerated it much better than the first one I tried.

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  • bcincolorado
    bcincolorado Member Posts: 5,758
    edited November 2015

    Weight is an issue with tamox and from what my onco said it will be with Letro as well.  He laughed when I said I was trying to get back to my pre-cancer weight.  He said it probably will not happen as long as I'm on meds.  I eat salads and low cal and abot 800 cals a day max.  Nothing works. 

    Bottom of my big toe joint has been killing me most of the week.  Last week it was my hips.

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