FEMARA
Comments
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in regards to fingernails - mine were breaking much more than they had in the past. I started taking biotin (8000 mcg per day) and that has helped immensely.
in regards to closeness - IMHO it's really important (as Usha says) to keep it up - even on days when you may not feel a lot of desire - once things start up, the desire comes as well - and to be honest, even if there isn't a lot of desire, knowing that you are pleasing your husband and helping him feel close to you can be a real intense pleasure all of itself.
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My onc wants to switch me from tamoxifen to Femara. When I looked at the Hormone Therapy Comparison Chart on this site, Femara had more side effects than Arimidex or Aromasin. Why did your onc put you on Femara instead of the other AIs?
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I'm on Femara because I took the Arimidex first and besides the normal side effects, I became depressed and anxious. She said to switch and see if I felt better on a different one and I do have a lot of the usual side effects but the depression is gone and it's made a huge difference in how I feel. Much easier to deal with the SE's when you're not depressed...
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you know, I totally agree that dealing with the SE is easier when you are not depressed
I started on femara, switched to aromasin after a year as I was getting leg pains which I atributed to the femara but wonders of wonders, turned out to be side effect of a statin (zocor) which disappeared when I stopped that med
have had a bumpie year but have managed to get control over several persistant health problems that dated to before all this stuff started
guess what, feeling much better and even though my mamo had new calcifications this week. I am dealing with it much better
suggestion, before any and all big tests, treat your self to a massage, facial, manicure or pedicure or maybe all.
does wonders for depression but really addicting in a very nice way♥
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I was catching up on posts and I can relate to almost all the SEs....I just lost a toe nail...it just lifted off. There's a thin layer of new nail under it.
While traveling my meds got screwed up and I was having lots of issues....just went back on Femara nightly which works best for me....it was causing depression and lethargy during the day. I also take bupropion and so I take that in the AM so I have energy. It works.
I ran out of Femara for about 5 days - someone threw away my refill - now I started and got the SEs again...warm flashes, the angina-like pains that are scary; aches, lack of focus...inability to multi-task...and sore thumbs again...exhausted but can't sleep.
I had a tough year at work but I hardly missed any time post surgery during rads and after...it took its toll though as I was disorganized, messy, procrastinating....I want to tell my boss and assistant boss about my challenges and meds but I feel if I do that, I will be compromising my position and may raise doubts or lose respect. I need my job 2 more years to get medical for life.
Anyone else have job challenges? Anyone speak with bosses? Most know I had bc but I was so intent on being "normal" and not sick that I did not take time to rest and heal.
Joan
PS - I also had nosebleeds - I think it's from drying of skin. Not sure.0 -
Joan, I work for myself so I haven't had to deal with bosses, but I would certainly consider it a job challenge. I worked my first 8-hour day this week since August. And I used to be a workaholic. Now I am too tired, too dizzy, too distracted, unable to focus. I did recently discover I need B12 shots, but so far they have not helped.
I had the nosebleeds and nail issues from chemo...didn't even know they could be femara SE, too.
I wonder if it's worth talking to a lawyer first who is familiar with the ADA. If your company can make a "reasonable accommodation" for you, maybe reduced hours/responsibilites until you stablize on femara, then you might be able to take a bit more time to heal.
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@sling99: I was having lots of awful, and ever increasing, SE's from tamoxifen, so my Onc switched me to Femara on Valentine's Day as I am officially menopausal by a few months. The Femara has been mostly fine, even my hot flashes have diminished to almost nothing for the past 2 weeks. I have been having increasingly worse joint/bone pain since about a month into Femara. It was disrupting my sleep and my physical abilities, everything hurt from the neck down all the time. I saw my Naturopathic Oncologist this past week and told her about it. She said it was a very common SE and indicitave of the start of osteoporosis symptoms. She prescribed Osteo-K, a natural form of Boniva type drugs. I tried it with no expectations and voila', the pain diminished 50% after one dose and after 2 days, I am nearly pain free. It is unbelievable. I was eating Motrin like candy, sometimes it seemed to help, sometimes not. I have no other health issues besides the BC, I exercise regularly and do yoga. I will post again if anything changes, but I wanted to share this with all of you on AI's. You can order it directly from the manufacturer.
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phxsunshine:
Thanks for the info on Osteo-K. I've been having bone/joint pain too started out not too much but lately getting a little worse. I'm going to ask my MO about it on Monday. Now I'm fighting the beginning of a nasty summer cold, yuck!
Thanks again for sharing your experience with Femara, I appreciate it.
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cfdr,
Thanks for the encouragement to take it easy. I worked so hard to not miss any work and do all I usually do and more...so it is not physically apparent that I am dealing with SEs.
I am off from full time work for 2 months and I hope that time will be helpful for readjusting to the drugs again.
I am feeling overwhelmed by all that has been neglected and needs to be done. I just want to sleep for a few days.
It sounds like you took off some time from business. We have similar diagnoses but I did not take chemo. If I had, I think I would have taken a semester off.
Hope you are doing well.
Hugs,Joan
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Hi,
I am on Femara for 9 months already. At the beginning
everything was fine - almost no SE's. After being on Femara for three months I started getting some bouts of join pain. It
would last for a few weeks - and then disappear
without any obvious reason. Now I have very bad pain in my hands at night -
have to wake up and exercise my right hand. I know for sure that the pain is a
result of working with the computer mouse - it is diminishes over weekend. I
try to make some breaks during the day while working on PC - it helps somehow.Also I noticed that physical work with my hands helps a lot -something
like scrubbing the floor, pulling the weeds (works the best!).And regarding the nails - I used to have very strong and
long nails all my live - until I started my BC treatment (although I didn't
have chemo). I can't take calcium - something with my guts (I have celiac). So
I drink almond milk instead - at least a couple of glasses daily. My nails are
back, my hear is getting better too. I even had to shave my legs recently - I
didn't have to do it for many months, it didn't grow there since I started
Femara.Does anyone have advice what works with Femara SE's? Would love to hear it.
My best wishes to everyone :-)
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OK, so much for my advice. I woke up to vision problems on Sunday morning. At 2:30 AM on Monday, I awoke to a sharp pain in my right elbox which ran down the outside of my arm to my pinkie finger. Upon fully wakening, I realized my entire right side hurt, from the top of my head to my toes. I didn't feel ill or have a headache, things just hurt/burned. I was also very fuzzy headed and didn't get much done yesterday, I was unable to drive. Called my Onc and he has taken me off the Femara for 2 weeks, starting last night. The good news is, all the symptoms cleared up overnight. Nothing is permanent, so that's a relief. I have a friend who has bad neuropathy in her hands from 6 weeks on brand name Femara, that has never gone away. So, I feel like I've dodged a bullet now.
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Hi, all. Thanks for this thread (and the ones about the other AIs). It's both scary and reassuring to read about other experiences.
I started Femara (2.5 mg generic letrozole, dark gold) on May 1, 2012, about 6 weeks post my BMX surgery with DIEP reconstruction. While my nodes were technically negative (no tumors or clumping of cells), my BS did note that there were cancer cells found in a couple of them (they took 3) and has really urged me to do whatever my MO recommends for treatment. I did not have chemo nor radiation but did have the BMX as a risk reduction.
Initial opinion on the Femara is that I am handling it fairly well but not without some side effects. I should note that I also started Lexapro (10 mg generic escitalopram) about 5 days prior to starting the Femara, on my MO's recommendation. I take both drugs before bed based on my MO's recommendation, and because of some of your posts.
The following side effects are being listed because I can clearly attribute them to the Femara (and sometimes maybe the combo with the Lexapro) versus any of the other drugs I take and have been on long enough to know they are not causing these particular side effects.
Nausea: Both the Femara and the Lexapro had me constantly nauseous for 3-4 weeks. It was mild but uncomfortable, and I did feel better if I kept a little something in my stomach. I didn't have much nausea on the Lexapro alone (but a bit) but it definitely increased when I added the Femara so I'm guessing that, while I was getting it from both, the Femara kicked it up a notch. That has almost completely gone away in the last week or two.
Dizziness/Lightheadedness: This has gotten to be a constant issue and I have learned that I cannot get up from a sitting or laying position without standing a moment to let things settle down. Some days it is worse than others and it takes a lot longer to settle down, but it is a constant regardless of the severity. I do occasionally get lightheaded/dizzy when just sitting or standing but that's much more rare.
Fatigue/Unusual Tiredness: I still spend 1/3 to 1/2 of my day in bed. I usually feel better in the morning and use that energy to do a 45 minute/2+ mile walk, do some garden work, housekeeping and/or errands, etc. There are some mornings where I don't feel less fatigued but I make myself do the walk, some housekeeping and my garden watering anyway. I guess I just feel better psychologically knowing I was a little productive! By mid-afternoon I usually can barely keep my eyes open and just feel so tired I can hardly see straight so I get my shower, get into my pjs and lounge around the bed or couch. This still could be some leftover healing from my surgeries in late March. Some days are better than others and I allow myself to go with the flow on that.
Sleeplessness/Waking Up: I've rarely had trouble falling asleep until I started the Femara. Now I do, plus I find myself waking up anywhere from once to several times a night with my mind racing. I used to use Xanax (.25 mg to .5 mg) before I went to bed for a while but recently decided to try melatonin instead. That jury is still out. I find that the melatonin causes more nausea and dizziness and I feel really "flat" the next day, plus doesn't seem to make any difference in falling or staying asleep so far. I'm using 3 mg and may back it off a little more and give it more time to work before I decide whether to continue. I just don't want to keep using the Xanax on a daily basis unless I am really anxious.
Joint/Muscle Pain: This has been interesting. I don't have much (or any) on a lot of days but every so often everything just seems to hurt. I do have a partial tear in my left shoulder rotator cuff (getting that addressed got back-burnered with my cancer dx) and it does hurt a LOT more than it did before starting Femara. My MO did suggest glucosamine if I experienced joint pains but I haven't tried it yet. Mostly, it feels muscular when it happens, other than my shoulder. Again, this is (so far--knock on wood!) a much rarer SE for me.
Foot/Lower Leg Neuropathy: This took me totally by surprise. I often have really cold feet and wear little sockies in bed when they are that way; however, about 3 weeks ago I noticed that my feet (staring slowly from my toes and working its way up to my ankles) started feeling tingly and like they were actually burning--even though they were cold to the touch. Then they got so sensitive I had to take off my sockies because anything touching them felt awful...not even sure how to describe it. This seems to be getting slowly worse. I don't have it every day but I seem to be having it more and more often.
Hot Flashes: Maybe because of the Lexapro (one of the reasons it was prescribed), these have been mild and not frequent. I do get them and definitely KNOW when I'm having one but they are mild and usually only once or so a day at most.
Headaches: Definitely have had more headaches that seem to last a lot longer and be more severe than I am accustomed to. Sometimes it takes a day or two to ease up, even with things like Excedrin. Maybe twice a week?
Weight and Fluid Retention: Have to combine these two. I have been working to lose weight since January 2011 and am down 40ish pounds since then...at least 15 pounds of it since my surgery in March. What I have noticed is that I only tend to gain any weight if I am retaining fluid AND that I retain a lot more fluid on Femara. My SE sheet actually instructs me to not add additional salt to my food (I love salt...that's been a hard one) and I have noticed that if I do eat the occasional salty things, I almost immediately gain about 4 pounds and it takes 2-3 days to get back to my starting weight (and drinking LOTS of water). My ankles don't swell but my hands do, and it also increases the edema in my ab area (still healing from surgery). Despite my weird schedule of working out vs. laying in bed, I haven't gained any weight and am hoping to continue that trend. I would still like to lose another 15-20 pounds but we'll see how that goes. It's obvious that I will have to learn to love non-salty foods, though.
Vision: I definitely have begun to notice that my vision seems to be changing. My normal glasses broke about a week ago and I put on a pair of older glasses and actually saw better out of them! I'm going to watch this (no pun intended...geez) and will make an extra trip to my eye doctor if necessary in the next month or three.
Dry Skin/Nails: This has gotten worse and I spent a lot of time (and money) at CVS looking for good moisturizers. Without getting into TMI, I've also noticed some vaginal itching and that has been helped a lot by Vagisil anti-itching cream and wipes. Thumb nails have also developed significant ridges and the other nails are starting to.
Bone Density: I already have osteopenia (just shy of osteoporosis) and incidentally had already had a bone density scan right before being dx with the cancer, so we do have something to compare in the future. I started taking Fosamax in January, along with the calcium/vit D3 supplements. While this is a definite concern, I was more comfortable dealing with this (not likely to kill me suddenly/unexpectedly) issue than the possible issue of blood clots on Tamox. (my mom has a history of severe blood clotting).
Cholesterol: Mine is already slightly above normal and I started a low dose of Simvastatin in January. My PCP is monitoring my cholesterol levels every 4-6 months now that I'm on Femara.
Blood Pressure: Also a little above normal, I have been on a low dose of Lisinopril for about 4 years. I've noticed that my BP seems to be running higher since starting the Femara so am monitoring it at home, as well as at the frequent (sigh) doctor visits and may need an adjustment. You'd think with my exercise and good eating program that would have gone down so I'll be a little concerned if this is a trend.
So far, no noticeable hair loss.
Hopefully, this list will help someone else. I will be seeing my MO in early August and plan on bringing my "list" at that time. I suspect some things will get better and some worse but it's an interesting journey (HAH). My plan is to try to stick it out the whole 5 years. I know I have options with the other AIs and will do whatever I need to do as things progress. My husband and I frequently discuss the quality of life vs. the odds but as long as I can deal with the SEs, I will.
Will post (less lengthy) updates in the future. Well wishes and healing Light to all you awesome women!! Elisabeth
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Hi Elisabeth,
There are a lot of side effects to choose from, aren't there? I identify with the sleeplessness I also take Letrozole, a mild statin, and bupropion. I hope you find the right drug combo.
I had to split mine into separate doses (morning/evening) and it worked.
Joan8110 -
Hi Elisabeth,
I started lexapro in September (between rads and chemo) and femara in January. I didn't notice any SE with the lexapro, and did find a decrease in anxiety. I'm experiencing a lot of fatigue post-chemo, which could be a combo of femara, post-chemo and a B12 deficiency. I have definitely noticed the dizziness with femara; it is worse with heat or exercise. I have a history of migraine, and although I get some low-grade headaches, I have not had a severe headache since starting femara.
I take melatonin and it really helps me. I take it around 8:30 and go to bed some time between 9:30 and 11:00. I find it takes at least an hour to kick in; if I take it right at bedtime it doesn't seem to help.
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cfdr, I took Lexapro pre-diagnosis and it totally wiped me out and I felt pretty down and out. My RN wanted to increase it but I said no, I want off and switched to bupropion which has almost the opposite effect. Since Femara makes me feel very down and tired I take it at night; and the bupropion gives energy during the day. My SEs are moderated now. When I feel the depression coming on, I recognize it now and I just get busy or go out. No giving in, not if I have to take this for 5 years or maybe more.
Joan0 -
I'm also going to try ginseng for energy...read a medical report recently that said it has tested well. Also read a recommendation for cancer-related fatigue that said that exercise should not be intense enough to get out of breath. So I'm going to try walking at a much slower pace (especially on hills) even when I have energy to walk faster....see if that helps keep the bouts of fatigue at bay.
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I've been on letrozole for 7 months now and find I'm getting more and more tired. I wake up tired and go to bed tired and in between I'm tired.
This week I've also started waking up with a headache every morning. It goes away within about 1/2 hour - but still... The worst problem I've had recently, though is that I get a muscle spasm/pain in my hip on occasion that almost takes me to my knees. I love to walk, and find that I'm afraid to do so, as I don't want to fall on my face - or break out crying amongst a bunch of strangers....My sleep has become especially erratic. I've never had trouble falling asleep and still don't, but I wake up about every hour to hour and a half just aching. Then I'll move around some, go back to sleep. I honestly think the tiredness I'm experiencing has more to do with the inability to have good sound restful sleep than a direct result of the letrozole. Of course, I also think the lousy sleep is a direct result of the letrozole, so either way it's letrozole...
Though I'd love to blame my weight on letrozole, it seems just about the same as always - easy to gain - hard to lose.
Ysa - I highly recommend taking biotin, as it helps with both nails and hair issues that arise from the letrozole.
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I love reading how everyone is coping with their particular symptoms, and the great suggestions that come out of your experiences. Thanks so much for sharing.
Been really trying to figure out why I feel so weird the last 3-4 days. It's very possible that it has a common cause as I've been experiencing a lot of symptoms of vasomotor rhinitis (which I have, along with allergies) for the last week or so. There are no real allergens around right now, so I'm kind of at a loss to explain why the rhinitis has kicked in so strongly (sneezing repeatedly, runny nose, post-nasal drip). Am quite sure I don't have a sinus infection, however.
Am extremely tired, a little shaky, and seem to have a lot more lightheadness/dizziness (mostly upon standing but actually had some while lying down last night). Also, off and on sore throat (probably due to the rhinitis). Last night I had what felt like very mild electrical surges going through my body--sort of like all my nerve endings were super sensitized and all my hair was standing up. Seemed to start when I brushed the side of my left foot and nearly jumped with the touch. Since we had a thunder storm building with a ton of lightening right at that time (which hasn't happend here for quite a while), I joked with my husband that it felt like the time we had lightening strike really close to us during a thunder storm many years ago. Who knows, maybe I really was reacting to the charged air in the area. I'm fairly confident that no one will ever seriously list THAT as a side effect, though. LOL
Have used Xanax before bed the last two nights and slept much better but the other stuff seems to have intensified. Hate whining but it's kind of a relief to share this stuff out loud rather than having it sit in my head and stress me out. My husband is really kind and loving but I know he feels useless to help (which he kind of is, other than checking on me and getting me things when I really need him to). I do see my MO the first week of August and want to wait until then and see where I am with all this before mentioning anything. On one hand, I don't feel that anything is SO seriously out of whack that I need to change AIs (except maybe the fatigue), but I am definitely keeping my fingers crossed that this, too, shall pass.
Again, I lurk a lot and really appreciate your posts. Don't feel as if I particularly need answers to anything right now (although biotin has made it on to the list for my next shopping trip) but I am grateful for you "listening". It means a lot.
Sending Light and healing energy....
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Gumby, joy of joys, I had something similar to that hip spasm you describe. It happened today. I used to get it as a teen from having scoliosis, so when it happened today I wasn't sure if it was my back or the letrozole. I am leaning towards blaming the femara, since my back is in fairly good shape these days.
Nice ot see you Elizabeth, and I agree that this thread is very helpful.
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I am starting FEMARA tomorrow. Had a lumpectomy & 12 nodes removed May 24th and this will be my first treatment. Radiation starts July & I have opted not to have chemo....potential side effects seemed to far outweigh the benefits for me.
After reading all of these posts I am so afraid of the FEMARA side effects....I have delayed filling my perscription for 10 days because of this fear. Sometimes I wonder if I should just risk it out and take nothing. I am guess I am being a big baby.
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Isabelle, I dragged my feet a bit too. But really, it is not THAT bad. Also, if for any reason you really do have horrendous SEs, you can stop. It would be silly to skip it if it turns out that you don't have any serious SEs.
From what I have read so far, those stupid little pills are really effective.
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Hello Momine...thank you for that....I will remember to call them "stupid little pills". You made me laugh through the tears.
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I have been on femara for two years now and may be one of the lucky ones but I have had minimal SE. Due to chemo I have neuropathy in my hands and feet so have had a lot of pain from that. Talked to my MO on my feet pain and he sent me to a podiatrist. He prescribed Metanx for me and boy that has worked. The Metanx is a prescribed vitamin that has combination of folic acid, b6 and b12. My toe nails are in bad shape but that was due to the chemo, my finger nails are not as strong as they were but doing ok.
I take femera at night since is was making me feel disoriented during the day. I also take melatonin at night to help me sleep. At my last bone scan I did have 13% bone loss in my lower lumbar L5. So now I am getting every 6 months a zometa infusion to boost bone production. I see my MO next month, so I will ask him about the Boniva product.
There is going to be SE from any thing that is being perscribed for BC maintenance. After I read about all the SE I was thinking no way. But I had trust in my MO prescribing what he thought I would need and he has be right so far.
I do not get on the boards very often but each time I get on, I learn new things. Thanks ladies.
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Isabelle - please do not be so afraid of the SE's that you don't take it. The stupid little pill can save your life - what are a few SE's compared to that possible downside??? Most of the time I don't gripe about the stuff, as there's always going to SOMETHING that we'd rather be different, right? But I think it helps us all to know that we aren't just nutso, and the weird things that are happening to me (or you) are also happening to other people.
On a scale of 1 to 10, with one being no side-effects and 10 being the worst imaginable, I'd put my reaction to letrozole at about a 4. My reaction to tamoxifen was about a 9. But my reaction to some OTC meds is about 6 or 7, so again on a scale of things, letrozole isn't huge (for me).
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Well, I tried to read all 110 pages of this thread and got to about 80 before I wimped out. I have a new prescription for Femara. Stopped at Walgreens today to see if I could get any information on the generic fillers, and got some inserts. Lots of information in those, but nothing about fillers. They only have the pink one (Myla, I think?), so does anyone know about the fillers in that one?
Between a bout with chemical sensitivities about 10 years ago, menopause about 8 years ago, and Sjogrens diagnosed last year, I think I have already been through most of the SEs everyone is talking about. Felt almost normal a few months ago, then the BC diagnosis. I am so not ready to start feeling bad again.
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Diana- I am sending you a PM.
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Hi everyone: I've been on Letrozole for three months and the SE for me include thinning
Hair, slight numbness and tingling in feet and finger tips, bladder pressure...this. one only lasted a few weeks, and my latest..just started two days ago, nausea....can any of you lovely ladies give me some suggestions......PLEASE...it's putting me off my food...what the hell....I gave up meat, my red wine and my cigs(givining up the cigs. Of course, is a good thing but what is left is FOOD ...ladies please give me some tips in dealing with the nausea...thank u0 -
I'm experiencing some nausea myself, lately, and I've been on Femara a week shy of 3 months. I've been trying to add some ginger to my diet (gingerale, ginger snaps, ginger tea) and it helps for a while. I've also found eating smaller meals, especially for dinner, helps some. Once in a while I take some compazine I have leftover from chemo, if it gets severe. I'm hoping the longer I'm on it the better this gets. Also Omaz posted a chart a few pages back of the fillers in each manufacturers version of generic Femara, I'm thinking of asking my pharmacy, to order a different one. Right now I take the pink one from Mylon. It seems to have more fillers than some of the others. Maybe she wouldn't mind posting it again, so we don't have to search through all the pages to find it.0
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Hi GrandmaV Thank u for replying. I am in Canada and my company is Sandoz, but I will research what else is in here. Funny, I am just shy of three months also and it just started a few days ago. I will, try some of your suggestions although I do eat raw ginger everyday. Thank u again.
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Here is the list. I think there are more as well. Control + will make it bigger on your screen and Control - will make it smaller
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