FEMARA
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IBigDBeatingBigC:
Wow. Sorry to hear about all your difficulties. I've read about some having a vertigo type feeling and having it go away. I'd be nervous and definitely NOT drive under the circumstances. I do know from experience that the night sweats are a real symptom and may vary like everthing else.
One thing I have read, is that some women ease their way onto the AI's, taking it every other day for awhile, under MO supervision. I wonder if that, or trying the Brand Name Femara would make a difference for you?
Good Luck!
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...bizzarre dreams, more frequently. i did take it early one night, and got totally dizzy, and felt quite ill, i won't be doing that again, soon. hope i dont have to get outta bed in a hurry. and i do notice my appetite does decrease with arimidex, tamoxifen, and now femara too. doesnt mean i dropp the xtra 10 lbs, though.
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Kathec, the elusive 10lbs....... As long as we're happy!!
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IBigD - so sorry about your reactions. Scary. I have only been on the Femara for 10 days. Stiff and sore muscles and joints, crazy dreams and extreme fatigue the past couple of days. Decided to nip it in the bud and switch to Brand name Femara instead of Letrozole. Its a $100 copay for 3 months under my insurance which is well worth it if the SEs are milder. I should receive the new prescription in a week or so.
Strange thing is I'm fine once I get going, its just the getting going - getting up out of the chair, bed, etc. - that is so difficult. I have no trouble exercising once I am warmed up. So I guess its not too bad. Hate the tiredness though. Especially when it hits right when the kids get home from school and need me
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mfm48-- I thought you were talking about me! I too have trouble when I first get up. And the tiredness is driving me crazy! Between the aches and being tired I don't want to move come 3:00. So sick of feeling the effects of BC !
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mfm48 and Kayne, I've been on Femara for 8 months now and I had joint stiffness at first, especially getting up from a seated position, but it did pass after a couple months...
Now I feel great, I just make sure I exercise regularly and take magnesium powder to relax the muscles. In fact I'm in pretty good shape now and in a couple of weeks I am doing a 4k fun run..... something I never would have contemplated before BC.
Hang in there and I hope it gets better for you too....
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Hi all, I have been reading your posts and catching up. I am a "newbie" - I started letrozole in mid February. I too have morning aches and pains and stiffness and can hardly get to the shower fast enough to take a hot one! My pain usually recedes after I've been moving around. My sleeplessness does get to me and I find myself crashing around 3-4 pm. My night sweats have eased a bit so that is good news. Now what can I do about hair loss? Really driving me nuts. Any good suggestions or remedies? Thanks for sharing your info - it makes me know that I am not imagining the SE's!
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Canuck, Biotin is good to help with the hair loss......oh and it will slow down after a few months and stop altogether after about a year. Mine got really thin but not thin enough that it was noticeable to anyone else and has now been back to normal for about eighteen months. I've been on Femara for three and a half years.
Love n hugs. Chrissy
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Thanks Chrissyb - I will try that.
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Tammy - thanks for weighing in. It really helps that some people aren't slowed down by this drug. I seemed to work through all the other SE's from chemo, surgery, and radiation with less concern because I knew they were temporary. I think this is getting to me just because we have to be on this drug for at least 5 years. So awesome you are doing the fun run. I did not know about Magnesium powder. Going to research it now. Whatever works.
Canuck - I take biosil every day (you can get it on Amazon). I did cold caps so kept most of my hair - the biosil helps with the new growth I am told.
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Mfm, do keep in mind that the SEs are not continuous and permanent. It freaked me out too at the beginning, but then I realized that the SEs sort of come and go. They are not necessarily continuous, nor necessarily permanent.
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chrissyb- Did you ask your MO if Biotin interfers at all with the effectiveness of Letrozole? I'm sure you did or you wouldn't be taking it. My hair has just started coming in good after chemo/Herceptin and I was interested in Biotin after seeing it mentioned here to do everything I can to prevent any more thinning. I've been on Letrozole for only 3 weeks.
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Peaches it doesn't interfere with the Femara/Letrozole so is quite safe to take. I've been on Femara for three and a half years and it has kept me stable for that long and seeing as I'm stage IV, that's a good thing. I've also been taking the biotin for at least two and a half on those years and all is good.
Hope t does well for you.
Love n hugs. Chrissy
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Just purchased some biotin so sure hope it will help. I also picked up my rx for letrozole and asked the pharmacist if they purchase letrozole from the same manufacturer all the time and he said no they buy it from whomever they get the best deal from. I wonder if this has any effect on SE's. I think I will check into cost of Femara. Has anyone noticed a difference between generic and Femara?
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Thanks Momine. I do think so much of life is psychological. Taking every day at a time, and loving the good ones! Canuck, I just put in an order to change my prescription to the brand name Femara. I will let you know if I feel any different after taking it for a couple of weeks.
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femara is still being pretty gentle with me, but i have had some really bizzare "tones" loud, starting in one ear, and then shooting through my head, to the otherside while getting louder, then suddenly it stops. accompanied by at the same time, a loss of external hearing, and a sense of... no... thoughts, and a kind of weakness. And those vivid dreams! I am going to start writing them down! i am only 54, and no history of strokes or clots, personally, or in my family... weird sensation that was. i was already standing both times when that thing happened, but was able to lean or sit, not exactly quickly. dont see onc foor a month..
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mfm48 Thanks it will be interesting to see if in fact you do feel different (hopefully better) on Femara.
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Kathec, I have also "heard" some odd things.... Not sure what that's about....
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After reading all the post on here I am scared to start my letrozole. I emailed my OS to check on some issues since I"m having peripheral neuropathy from chemo and I have had allergic reactions to chemo, anesthesia and other pills the doc have tried to give me . He suggested I take 10,000 IU D and 2,000 mg of Ca2+ for two weeks before I start the 5 year journey. My Vit D was check before I started the pill it as 13, hence my up taking of Vit D and Ca2+. Right now, I"m just tired of all the surgeries and really don't want to take a pill for 5 years.
My questions for you gals, is did you start keeping a journal of your symptoms. When do you suggest taking the pill AM or PM?
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Great name FairyDogMother!
There are all sorts of ideas about when it is best to take the pill so you should try whatever works for you and adjust as needed. It was recommended that I take the Vit D and Calcium too on the premise that one possible side effect of Femara (or its cousin) is bone density loss.
Whatever side effects you read about may or may not happen to you. And whatever side effects you get often don't last. For example, in the first few months, I got trigger fingers but now that I've been on Femara for almost five years, that doesn't happen at all. If one knee is sore this week, next week it might be the other knee or both might be fine. It makes life full of surprises! As my grandmother used to say "don't worry. It might not happen".
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Fairydogmothter!!! Hee Hee, what a cool name! Congratulations on finishing chemo and so sorry you are having issues. Femara is a "home run" for those of us that are ER/PR+, so try to focus on that aspect of the treatment you are starting. I agree with the last poster. First, some side effects won't happen and others are not permanent. That has been my experience after 8 months. I did not keep a journal of my side effects but the best explanation for that is that I am lazy (and I don;t want to jinx myself by thinking all the time about how I am feeling). What you will hear over and over is how important it is for you to exercise and keep moving. I am a believer! Also, you will need to experiment about when to take it. I started at night, but had insomnia...changed to the morning and doing great. Others can't take it in the morning and night works for them.
Keep us posted on how you are doing and try not to worry.
Love, MsP
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Hi: I hope you're feeling better soon.
The first thing that caught my attention in your post was in going back to work after only a week off from radiation. I know radiation has it's own side effects especially fatigue.
I've been on a break from generic Letrazole and feel much better. My mood is better and my achy knees and hips are back to normal.
I see my MO to discuss the continuation of Letrazole next Wednesday.
livin-in-sunshine: This is the first time I heard of trying Femara instead of the generic., have you heard it's tolerated better?
Take care to all.
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FairyDogMother, I kept a journal initially, but gave it up after about 2 months. I find that the SEs fade in and out. I too was scared to death for some reason, but I really haven't had any serious trouble, just various annoyances.
Exercise definitely helps against SEs. My main SE that seems to be with me most of the time is joint pain. It has not gotten too terrible though and I think it is because I manage to get some sort of exercise daily (and walk my dogs
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FDG - my hubby encouraged me to keep a journal, so I began one - I think that lasted about a week.
The SE's from Letrozole/femara are a mixed bag - some people get them, others not so much. Just for grins I actually read the drug enclosure when I got my last refill. I read it to hubby and then we both started to laugh - I had every single one of the listed side effects - some to a greater and some to a lesser degree. My worst at this moment is joint pain/stiffness in my back. I have a hard time standing for any length of time, and have to sit often when walking. However, if I keep at it, eventually the stiffness and pain will subside and then I can move more normally. Exercise is, I believe an extremely important component to dealing with this drug - massage and acupuncture help as well. Oh yeah, the other thing is that I sweat an inordinate amount. Even my eyes sweat. Don't worry too much about the miserable side-effects, though - just keep in mind the primary one - defeating cancer. Everything else is doable.0 -
Hello Everyone!
Does anyone know if the hair thinning/loss from femara is permanent? Will it come go back to normal after getting off of it?
Thanks!
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In a year or so I will know the answer to that question - because this summer will be the end of five years on Femara. The caveat is that whatever happens to me may or may not be similar to what happens to someone else. Femara is like that!
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meshell my hair got really thin for a while and I took Biotin to help. That was about eighteen months ago and my hair is now back to normal. Everyone reacts differently to Femara/Letrozole hopefully your hair loss, like mine will not be permanent.
Love n hugs. Chrissy
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I know this sounds crazy, but if you are suffering with night time leg cramps, try putting a bar of ivory soap between the sheets. I laughed the first time my friend told me about it, but it really worked for me. I get really bad leg cramps at night and since I've put the soap under the sheets, no problems. If I sit for long periods of time and the leg cramps start, I get a bar and put it in an old sock and hold it next to the cramped muscle and it will subside. Google Ivory soap and leg cramps...no one can quite explain it, but tons of folks swear by it (me included)!! It beats taking yet another medicine and it's cheap.
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That is interesting, Duck, thanks for the info.
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That bar of soap works for me too (most of the time)! I put it between the bottom sheet and the mattress cover so it doesn't fall on the floor all the time.
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