FEMARA
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HI, Femara really made me anxious and I felt like I had PMS symptoms especially now that I have stopped it. They MO had me stop it for awhile because my ENT thought it could possibly be causing my ear ringing, A month later and ringing is still there so was not the Femara. My MO told me if I chose I did not have to take anything anymore. I am only 3.5 years out and so I highly do not believe I should just stop. I am also 100 percent ER positive. I am not sure I like my new MO because of her "its up to you attitude" I like her to tell me what she thinks I should do after all she is the specialist! Crazy drugs!!
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After another night of little sleep and feeling like a zombie today, I messaged the oncology nurse....after a few back and forth messages, she advised me to stop taking the Femara for two weeks. (the MO is on vacation until next Thursday.) She will call me back then. I just know I can't go on feeling like this and getting so little sleep. I did actually go to Zumba this morning and got a pedi after radiation, but I can barely keep my eyes open tonight. Will go to bed soon....and probably be up at 2am!
HAve any of you had sleep issues and tried natural supplements? I'm willing to try just about anything at this point and someone recommended "Luna" to me which has chamomile, melatonin, valerian and a whole bunch of other stuff in it. I sent the link to the info on it to the oncology nurse and asked about using it. She came back with "have you ever tried melatonin? Some women have found that helpful" so she obviously didn't look at the link!
Tomorrow night I'm walking in the Relay For Life event as a member of our church team. Fortunately, we had lots of people sign up to walk, so I'll only be walking one 45 minute shift. Still hoping I get a decent night's sleep tonight and I might try for a short nap after rads tomorrow.
Those of you who stopped Femara for a period of time...did you have any adverse reactions to that? I don't want to replace one issue with another!
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HI- I have been off Femara for about a month- I stopped it because my ENT said that ear ringing I could have may be caused by Femara- Still have ringing so guess that was not the problem. I had to wait to see my MO and now I will start Tamoxifen. When I went of Femara I felt a bit like I had PMS symptoms- I was a bit weepy and things bothered me that normally wouldn't. My mind has became more clear while off it.
Good Luck
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I am just a couple of weeks out of radiation... can't tell if forgiveness, fatigue, forgetfulness are from the radiation, femara, or fibromyalgia & CFS.
My sleep issue is extreme thirst that wakes me during the night. Anyone else have that?
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I have really severe ear ringing on the Femara, too. I also have vertigo. Was just taken off of it. this after only 2 weeks. I've always had mild tinitus, but now it's like someone turned up the audio! My ONc said they'd never heard of this... crazy how the blogs are the only way we can really find out what's going on.
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I had extreme thirst but it's much better. Try to watch the salt content of foods you are eating, especially in the evening. Ear ringing comes with every pill I take, even OTC and vitamins. Better than cancer recurrance. It gets very loud when I'm lying down
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I've had tinnitus for so long, I don't notice any difference. It's kind of a high pitched tone, not a roaring, thank goodness.
Thanks for the info about side effects going off of Femara, ndgrrl. Today is the first day I haven't taken it. But I've been emotional and short-tempered for weeks, but I think it's due to not enough sleep. Did better last night. Woke after the usual 5 hours, laid awake for a long time, but the next thing I knew, I was waking up and it was 8:38! I haven't slept past 5:30 for weeks.
Leaving now for Relay For Life...first year walking a survivors lap!
Have a great weekend everyone!
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6cats, I have a lifelong habit of going to bed with a glass of water on my nightstand. (With a lid, of course). I also combat nighttime thirst with a Biotene mouthwash that is supposed to help drymouth. I use it before bed.
To address previous comments about breaks and going back on Femara, I've found if I take a break of longer than a week, I will experience the side effects at the beginning, for a day or two. Maybe a few extra hot flashes, and a little extra hair loss but only for a couple of days.
My side effects subsided after 8 months of taking Femara, and that was even with upping my dose. But I believe Claritin is one reason my aches subsided.
My MO has said I could take Femara breaks for a month or more. I wish I could take F every day and I may try. If I could take it every day for a month or two, maybe I could take a month-long break on a regular basis. No one really knows. I just have my stable results from taking it every other day, compared to my regression results from taking it 2 days on, 1 day off for about 3 months.
Thanks everyone for sharing your experiences.
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Hello all,
I have not posted in a long time. I just switched from Tamoxifen to Femara. I was actually doing well on Tamoxifen once my body got use to it and I discovered that the fillers from the different manufactures affected the SEs and severity of SEs I had. All went well until about 8 months ago when I started having a lot of leg cramps. Then in Dec. I woke up one morning with this huge bruise/rash on my leg just below my knee. Couldn't figure it out. Didn't hurt, itch, nothing. So watched it for a few months. Didn't really seem to get better, maybe a little worse. Went to see my doctor, then a dermatologist. Was told it was stasis dermatitis. But had not numbness or swelling in my legs. Contacted my Oncologist, wondering if maybe after 6 years of Tamoxifen I was developing a blood clot. She told me to stop Tamoxifen. Just got my blood work back and it appears that my ovaries are no longer functioning so just started Femara (letrozole) this morning. I know I will be going through an adjustment period. Been looking through this long thread, and was hoping if those of you who have been here over time could once again provide input on the different manufacturers and fillers used you have had the best results with.
I am starting out with Teva (which I did not do well with on Tamoxifen), but that is what my pharmacy provided me with.
Also have any of you had luck with getting non-generic Femara?
Thank you all for sharing!
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I would see if there is a different hormone blocker you can take. I was not given any hormone blockers the other time I had breast cancer. Now the cancer has metastasized to my lungs and bones. Stage 4 advanced. I am taking femara now with Ibrance in the hope that it will buy me a couple more years. I don't like the side effects but I'd like a little more time with my family. I wish you well and hope you are successful finding something with less side effects.
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Speaking of Metastses, here's an interesting article. It seems to me I'm reading the same story over and over again. We get dx'd with bc, then we do treatment, it seems like it's gone. Then in a few years it's back and all over the the place. Bones, liver, brain.
Association of Occult Metastases
in Sentinel Lymph Nodes and Bone Marrow With Survival Among Women
With Early-Stage Invasive Breast Cancer0 -
Grandmanet7: God bless you and pray that you will have many more years. I know someone who is 15 years with stage 4. It IS possible. Hugs.
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I take half a tablet each morning. I had extreme reactions to Femara (as well as Aromason and Arimidex). My onc approved trying half a tablet a day, and I've been doing that for around three years now. I had a new primary in my other breast five years after the first one, and this one was triple negative, so we (my onc and I) are assuming that the Femara is working fine with me.
I have arthritis that has progressed while on the AIs, but I'm managing it.
For those of you struggling - if you are having problems sleeping, take it in the morning. Try the half dose - it's better than nothing :-)
Trish
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Trish, I will maybe ask my MO about the half dose. I was taking it in the morning and still wasn't helping the sleep issues. I've been off it for 5 days now and still no help with the sleep.
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Hey there....I have been on Femara and Faslodex shots. I had no side effects from the Femara which I began a month or more before starting the hormone injections.
Wish you success and peace
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I've got some positive news. After gaining 20 lbs in a year on Femara (7 lbs. gained in first 2 weeks), I've finally been able to lose some. Both my oncologist and oncology pain doctor gave the OK for me to take Wellbutrin again. (I've taken it a couple of times before.) I started 5 days ago. From the first day, I felt all the "positive" side effects associated with it. I have lost so much weight in FIVE days that I am wearing my skinny jeans today, which I haven't been able to wear in more than a year. And I've eaten ice cream every day for 5 days, too. Like, an embarrassing amount of ice cream.
I have felt so terrible with this extra weight, not just how I look, but how I feel, bloated and unhealthy. I'm starting to feel like "me" again.
I'm sharing in hopes others may want to ask their doctors. I realize antidepressants aren't for everyone. I've taken probably 8-10 different ones in my adult life. Wellbutrin isn't without negative side effects (severe constipation), but itis the one I've had the best results with.
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really fatigued today, got 9 hours of sleep. Had PT today 2xs a week for strengthening, and balancing. Has anyone noticed this as a side effect? Been on Letrozole for about a year. Been tring everything for the insomnia. I try to shut my brain down when i turn off the lights. Sometimes helps.
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Hi Ladies. I am returning to this thread after a long break. My oncologist talked me into trying letrozol again. This is a new oncologist-young, smart, but still very starry-eyed. After only three days I was back to dripping hot flashes, soaking night sweats, and night terrors out the wazoo. I am on Effexor ER-started when I was diagnosed to help with hot flashes and depression. I am not sleeping at night but fight to stay awake otherwise. As soon as I try to sleep my eyes seem like they are superglued open. Crappy mood-even worse than usual. Today is day 21. My hair is falling out, my skin is scaly, my brain is mushier than usual, and I would like to punch someone. Anyone. And. During this past 21 days I have experienced several sudden onsets of nausea and vomiting. I did not experience this in the past with the estrogen suckers blockers.
In flipping through back pages I saw a post where someone recommended gabepenton for hot flashes. My MO recommended it this week. I cannot find any research on this topic. I took it for neuropathy a couple years ago. Anyone have info on how this works for hot flashes? He said it likely would not help the night sweats. Ugh.
My weight is horrid. I am going to talk to my team about weaning off Effexor and going on Welbutrin.
I am sad to see so many new names in this thread. But. If you gotta have the Big C--this is the best place to find friends, family, and help.
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Hate to throw a wet blanket on anything, but I’ve been on Wellbutrin (300mg.) since 1999, and I still gained a lot of weight on letrozole. Exercise for me is literally “running to stand still:” it’s the only way I can keep from gaining more.
I take my letrozole at bedtime (currently Accord because that & Sun all the pharmacies around here can get, and Sun is worse. Dang, do I miss my Roxane & Teva)! What helps me sleep is: no caffeine after 6pm, no alcohol w/in 2 hrs. of bedtime; limiting my alcohol in general; 3mg. melatonin; 1 mg. Xanax; 10 mg. Zyrtec; earplugs, ceiling fan (A/C if nec.) and good opaque window shades. Sometimes a sleep mask if lights are on in the hallways or my husband is watching TV. Valerian used to drop me like a plugged buffalo, but my MO is concerned it might have estrogenic effects.
I’ve had tinnitus all my life, due to many ear infections and doses of tetracycline as a kid. I literally have no idea what silence sounds like. The bad news is that many if not most vital medications are to some degree ototoxic. And have as the main SE in women weight gain, and in men erectile dysfunction.
As to joint pain, my knees are fine, since they’re “bionic.” No problems thus far with hips (except if I injure them). Intermittent finger-triggering, but my first bout with that (L thumb) began 10 yrs. ago, long before AIs. Feet hurt intermittently, but since I developed a stress fracture, cuboid syndrome, & a bruised metatarsal years ago, I can’t chalk it up to letrozole. But I do take two arthritis-formula acetaminophen at bedtime and 200 mg. of celecoxib in the morning.
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I've been off letrozole for a 8 days now...and I am sleeping again. I have backed down to half a 50mg hydroxizine and 2 extra strength tylenol if I feel as though I'm stiff at bedtime. I have also gone back to rubbing in chamomile essential oil in almond oil on the bottoms of my feet. That might be helping me to relax too. I have never had trouble falling asleep, but staying asleep. Been successful at it the last couple nights and it makes a world of difference as far as an alert brain goes. The rads are making me fatigued. Just so body tired all the time. Good news is, my bad hip pain is gone as well. So, now I wonder if I'll go back on letrozole or if the MO will try something else.
ChiSandy: I use earplugs as well and have been considering sleep mask if my sleep didn't get better. I have tinnitus too, and that seems to bother me more with the earplugs in, but I have learned to live with it. I have had a trigger thumb since February. I had gotten to the point where I couldn't bend the tip of my thumb at all. Miraculously, in the past 2 weeks, the thumb is fully mobile with only a little bit of a snap. I do have a huge lump though where the tendon goes into the base of the thumb, but the pain is negligible. We have something else in common...I had a stress fracture in my fibula 2 years ago. This is why I'm so nervous about AIs and the bone thinning.
Hope everyone is having a great weekend.
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ChiSandy, your methods for getting good sleep are worth recommending to others. Yes, our medications affect our sleep. But our inevitable aging affects us too. I had no idea that very soft light from my bedroom window was interrupting my sleep until I slept better in hotels with blackout curtains. I don't have the energy to open and close my blinds and windows fully, every day, so I've compromised. I've also noticed phone charger and toothbrush charger lights were also in my line of sight, in bed, and have blocked those out. Recently, I used a small fan in in my bathroom to dry some hand washables overnight. My husband and I both slept soundly with that noise. I used to think people who slept with a fan on were silly, but I think I'll add that to my repertoire.
I started Wellbutrin 3 weeks ago, hoping it would help with energy and weight loss, as it has in the past. I feel MORE lethargic, but it's still early. It has definitely lessened my irritability and perhaps my husband can tolerate me now. ;-)
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Has anyone experienced a sudden increase in blood pressure after starting letrozole? Mine has risen since starting 3 weeks ago.
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No BP problems here after 7+ yrson Femara/letrozole.
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One more thing to help sleep: after dark, I wear glasses with blue-blocking coating when watching TV or using the computer or other digital screen devices. Blocking blue light at night helps the body make melatonin and enhances the effect of any melatonin we take. I got the cheapest ones I could that also accommodated a progressive Rx. (39dollarglasses.com, though they’re even cheaper at zenni.com).
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I've been off of Femara for two weeks and after 8 days off, my sleep returned to "normal" for me...am able to sleep 7 hours, if I wake during the night, I can go back to sleep, no longer having meltdowns, crying jags, or biting my husband's head off. And the hip pain is GONE!
I got a call from my MO nurse today. They were going to put me on Aromasin, but she said to let her know if it was going to be expensive. Pharmacy filled it and I looked it up online and it was going to cost me $146.23 for the generic. We can afford it, it's just that it's a big jump from the $5 I was paying for Femara! I called the nurse back and she said, oh heck no, we'll try Arimidex first and see how that works out. I'm going to take it until I see the MO on August 8, and HOPEFULLY, my new sleep schedule (going to bed earlier), and the herbal sleep supplement (Luna) the the MO ok'd will do the trick. If I end up a blubbering mess before that appointment, they said to make sure I call back.
I don't use electronics much once I'm in bed. Usually use the iPad in the evening, and I have that set on the night mode, which turns off much of that blue light.
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wow, I wonder why Aromasin generic is so costly. A friend of mine was put on it as well and thought the Dr must have made a mistake an prescribed the name brand, guess not
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ARimidex gave me arthritic changes in my hands in 2 weeks and aromasin practically thre me under the bus. Could hardly get out of bed. Felt like I had a bad flu! letrozole sticks but will take these SEs any day compared to the others
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I tried Armidex and I had huge swollen ankles and feet, plus I ached so bad. Chsnged to Femara, body aches not bad but my BP went up, cholesterol jumped up in 10 months and my dexa showed bone thinning even though I was on a trial of Zometa (seeing if it keeps cancer out of the bones). I was not put on the 3rd Ai. I was put back on Tamoxifen. So far so good.
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I am NOT liking all these reports of Arimidex side effects!!!
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