FEMARA
Comments
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Good morning Ladies, I haven't been here for a while but really felt the need. During the summer I decided to stop taking the Letrozole as I was so fed up with the aches, pains and lack of quality sleep. After 1 month I felt amazing and even started to get some quality, undisturbed sleep then my husband read an article and insisted I start to take it again. Within 1 week the aches were back and sleep disturbed, now 1 month later I am lucky if I get to sleep 2 hours without disturbance, by mid afternoon all I want to do is fall asleep at my desk - and this is not just tired, this is like I am fine one minute and the next my hands just drop and my neck could snap, I remember being just like this before. Is anyone else still feeling like this, I know this formed some discussion quite a while ago? I see my onco nurse next week and I am hoping that having taken this stuff for over 4 years now perhaps they will now consider stopping this treatment for me. I already have to have Prolia injections for the osteoporosis this has caused and I just feel I want my life back before my body is so damaged by the side effects that I won't be able to function normally anymore. Thank you Ladies
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Monty what time of day do you take it?
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I have tried taking both in the morning and at night but doesn't seem to make a difference. I had disturbed sleep with even the "original" Femara but I seem to think it got worse with the generic. My husband keeps telling me to go to the docs as "I need quality sleep" but I don't see what she can do while ever I continue to take this stuff, other than offer more meds which I would prefer not to take. I have tried over the counter stuff, ZZZquil being the best to begin with, but now even that doesn't make a difference. I am feeling so sleep deprived right now .... oh for a night of undisturbe, blissful sleep - at least 8 straight hours is something I crave!
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That would be great!! Do you sleep poorly because of t he pain or judt in general?
I usually wake because I'm hurting and so I will take a tylenol or willow bark for the pain. Then ill generally get. 3 or 4 hours of sleep before waking again.0 -
I just wake up. On a morning I can hardly put my feet to the floor, and I ache generally all day but I can deal with that ... it's the sleep thing that is the BIG issue. Every night I go to bed and pray that tonight will be the night, but that doesn't seem to happen, and I don't want to add anymore meds any more.
Sorry to hear it is the pain that keeps you awake, I guess I am lucky that I have a very high pain threshold.
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Just waking up is the pits, too. When I was menopausal I'd wake up and figure that was it for the night and get up and start doing stuff. Now, I'll wake up and lay there for awhile. I try to think really boring thoughts, and usually will zone back out. But mostly I can fall back asleep cuz I'm so dang tired. Before I started taking this stuff I'd generally need about 7 or 8 hours of sleep a night, and in a crunch could get by on 6 for a few nights running. Now - on weekends I'll sleep 11 to 13 hours. During the week I try to get to bed by 8 as I get up at 5. I've noticed though that the more I sleep the less I'll ache.
I don't know if I need more sleep because it's more interrupted, or just that the pill makes me really tired. I think it's the latter, though.
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Can you take a month off then try aromasin or arimidex?
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Hi everyone: (Shellcat50) I was having numbness and tingling and all the rest in my feet. When I had the epidural last week, everything down there seemed to disappear, praying it is gone. When I first when on Femara, I found it ez. Now, of all times, my hair is thinning out as I enter for 4 year. Dr. says because we stopped for about 6 months, I have about 1 1/2 to go. Praying.
Having these iron infusions is getting to be pretty good. I was in hosp 3 hours, yesterday, after one hour of infusion, they flushed me 2x and I was all red. However, on the good side, up and ready to go anyway. I have not felt this good in ages. This had been on ongoing problem of low hemogloin since early years. Supposedly now 2 more sessions and yes, I was given a whole list of side effects, I have neuropathy, nerve damage and other good things. My little pill is Pink and I love it. I know two gals right on my block are taking Arimidex, killed me but they love it. Our bodies are all different.
So long for now.
Hugs,
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I empathize. I am really struggling with whether to continue with the letrizole that I started taking in February. I just got over a bad UTI...first one I've ever had and am trying to figure out why my jaw aches. It's apple season hear in NH but I can't open my mouth wide enough to eat them because it hurts. My PCP took tests...no infections. I keep wondering what kind of permanent damage is being done. According to my oncotype I have an 18% shot at recurrence without the AI and 9% with. I have a lot to think about. I dn't understand how the same dose works for everyone. Perhaps I could take less of it. I plan to discuss it with my onc when I see her nest week.
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If you peel the label/pharmacy sticker...it is right on the bottle. I too had difficulty looking for it until my DH peeled it and found it
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my pills are in those pop out foil things.
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micheleboots, If its not on the packaging maybe you could call the pharmacy and ask them who the manufacturer is.
gardengumby, I couldn't find CARA manufacturing or pharmaceuticals either, it may be a new generic manufacturer. I think I would call the pharmacy and ask to find out the fillers.
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Monty, Have you had your magnesium levels checked? Some medications cause a magnesium deficiency. Magnesium regulates sleep. I don't know if letrazole affects magnesium, but I wouldn't be suprised if some of the fillers do.
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dventi, It really is an eye opener. And my concern is that I have 4 other prescriptions and I take several supplements all with fillers, so I try to get the ones with the least amount. I have cut them down, but I have a long ways to go. It takes a lot of time to research each one to get the lowest amount and I'm not having much success with my supplements. I'm glad I could pass this along to you, but it was Omaz (breastcancer sister from here) who first introduced the first web site to me.
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I looked up cara. I think they are repackagers. I looked at all the descrptions though and sll but one said the pill was 6 or 7 mm. Mine is about 3 mm, so I think I've detrrmined which it is. Of course I wrote that down at work and forgot it there. I did notice though, the fillers in the Novartis product seem to be the same as most of the others. Including the talc.
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gardengumby, isn't it aggravating to know that they could make the pills with safer ingredients but don't? Some seem more interested in the color or shape rather than how the fillers will affect people. I'll continue to take whats available to me, until I find someone who carries the one I want.
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GrandmaV :I also am an advocate of supplements. I take Life Extension and other mfg. On the Life Extension for the the Ubiquinol/Coq10, the other ingredients listed dont appear to be too bad. sunflower oil, gelatin, glycerin, purified water, yellow beeswax, caramel color
. I purchase them at a health food store. They have a website where you can order the supplements. Let me know if you want the store name.. I know they ship anywhere in the US.0 -
Thanks, dventi, I appreciate all the help I can get. I've seen Life Extension at one of the health food stores here. I'll compare them with some of my supplements. Sounds good.
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Monty, I have had sleep disturbance on and off, while on femara. It had mostly gone away, then returned this week. Grrrr!
It is extremely annoying. However, when it came back this time, I tried to figure out why. I suspect that scanxiety, scans coming up this month, may be adding to the trouble. I don't mean that anxiety is entirely to blame, but if the sleep is already iffy thanks to femara, it sort of stands to reason that any additional trouble can really throw it off kilter.
Also, do you get any exercise?
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Hi There Momine (and everyone else who kindly added their comments), yes I do get exercise in the form of walking and that really doesn't seem to make a difference. I have suffered with sleep disturbance ever since starting Femara/Letrizole and it doesn't seem to make a difference even when I have little to no stress in my life. I did find while taking a self imposed break from our little pill that my sleep pattern improved greatly, and then almost as soon as I started taking it again BANG the good sleep pattern disappeared. I go for my 6 month check up next week so I will talk to the Onc Nurse once again. I did get permission to stop taking the pill about 1 year ago then the Onc checked my records and called me and said "get back on them". I really do not like feeling the way I do and wonder if the risks out way the quality of life, I just need some restful sleep, I am lucky if I can get 3 hours before I am waking up constantly - and falling asleep mid afternoon at work just isn't an option. I will keep you posted ....... good to be back here and getting the support from those who know what we all go through. Another question for you, does anyone else get the Prolia injections every 6 months for osteoporosis (another gift I was given), and do you have to pay for this? Here in Ontario it is not covered by OHIP or any health insurance providers. The nurse who gives me the injection says there is the same drug given by infusion instead of injection and that is covered, it has to be administered more often - anyone know which one it is and what side effects they suffer? I am going to ask about it at my check up - the nurse says I am the only person she gives Prolia to so I am wondering if I am the lone "guinea pig" in my area?
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Monty,
Someone else already suggested Magnesium -- and I take it, too... at night, when I take my Letrozole. I find this combo helps me sleep well, and not be (as) tired during the day. I sure have gotten to be a great "napper" though -- just put me in a jostling car, and watch me nod off! I consider it one of my new 'talents' connected to cancer treatment.
Another good thing with the Magnesium-- I read that Magnesium can help calcium pills better be absorbed... (calcium pills, fish oil, vitamin E, and glucosimine are part of my plan to eradicate joint aches -- along with daily stretching and long walks).
I get most of my vitamin/supplements from Melaleuca. Anyone can order online, or you can join for a discount. They use few/more-organic fillers and supposedly their vitamins/supplements are created to best be absorbed-into/used-by the body.
Best of luck to all
Linda
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Monty, my onc was all itchy to put me on prolia, but I declined. This may be a mistake, but for now I am good with skipping it.
I am also 3B and I expect to be on femara for 10, not 5, years.
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I have 74 days and i will me off femara. yeah!!! been long 5yrs
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Congratulations, Nanna. I have 3 years and 4 weeks to go - not that I'm counting or anything...
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I started taking it about 1 week ago and almost immediately my hands have become very hot. The Dr. said it would go away. I also have a low grade headache. I am premenopausal tho so it might be cutting out more estrogen than normal. I am also on Lupron Depot.
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I didn't know you could take it if premenopausal.
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Garden you can take an AI if you are not menopausal if you have your ovaries shut down either surgically or chemically..........that's why she is having Lupron, to shut the ovaries down.
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I take monthly injections of Zoladex to shut down my ovaries. The plan for me is to stay on Letrazole for life or until it stops working. Someone on another thread just shared a story of a women who lived with bone mets for 28 years...hoping that is all of us sharing that story some day. We can say " back in the day before they found a cure for cancer, we were hopeful of living for 28 years"
Michele
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Mom23boyzz, I too had a low grade headache when I started and initially I put it down to my usual sore neck but after a couple of weeks it went away completely. Now after 6 weeks I'm fine. I hope that's the case for you too :-)
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