FEMARA

Tammy_M43

Kathec, the elusive 10lbs....... As long as we're happy!!

mfm48

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  

Kayne

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 ! 

Tammy_M43

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....

canuck46

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! 

chrissyb

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

canuck46

Thanks Chrissyb - I will try that.

mfm48

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.  

Momine

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.

peaches12

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. 

chrissyb

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 

canuck46

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?

mfm48

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. 

Tomboy

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..

canuck46

mfm48 Thanks it will be interesting to see if in fact you do feel different (hopefully better) on Femara.

Tammy_M43

Kathec, I have also "heard" some odd things.... Not sure what that's about....

FairyDogMother

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?

lassie11

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".

MsPharoah

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

pabbie

BigDBeatingBigC

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.

Momine

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 ).

gardengumby

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.

meshell

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!

lassie11

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!

chrissyb

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

duck1216

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.

BigDBeatingBigC

That is interesting, Duck, thanks for the info.

lassie11

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.

Blessings2011

Here's the problem with keeping a journal of side effects when you're just starting out on an AI - how do you know how to rate the severity?

And how do you know that what you're experiencing are actually AI SEs and not some other, more common, innocuous pain or symptom you would have gotten anyway had you NOT been on an AI?

I tolerated Arimidex very well for the first six months. Then the joint pain snuck in... followed by a series of other SEs: trigger finger/thumb; lady parts pain, irritation, and bleeding; bladder pain and incontinence; high blood pressure; weight gain; and finally crushing depression.

I waited a full year before I went to my MO complaining of the SEs. She was very upset that I hadn't contacted her earlier. 

But before I did that, I wanted to make sure that what I was going through was not due to some other organic process. I had blood work to rule out inflammation, UTIs, a pelvic exam to rule out infection, and everything else I could think of so that I could present a list to the MO of what was going on. 

I really didn't need all that documentation for her... she assured me that she believed all of them came from the AI, and that I definitely needed a two-month break.

I created a log of SEs, and kept a weekly update to see how I fared without being on the drug at all.

But in the beginning, when I was first prescribe my AI, I would have listed my joint pain as a 9 or 10... when in reality it was more like a 2 or a 3, just because it was new. After a year, it was definitely a 10. I walked with a cane or a walker.

So yes, it's always good to keep track of new symptoms that you can discuss with your doc. Just keep in mind that we are all susceptible to different ailments that have nothing to do with AIs.

And when you do keep a log, try to use an objective scale rather than a subjective one. For pain, I used the old "scale of 1 - 10" .... I assigned those same values to the other symptoms I was having, and for the depression, I used a common depression quiz I found online.

I just logged in my actual blood pressure. 

I used an Excel form, and by the end of 8 weeks, it was very obvious that in the first few weeks there wasn't much change, but the changes were dramatic the closer I got to 8 weeks off the drug. All the SEs disappeared.

These are the kinds of things the doctor wants to see.

SO, after this long, rambling post, I would encourage anyone starting out to keep track of new symptoms, but be cautious as to how you rate them. Try to be objective, and add notes if something is really out of the ordinary.

And don't forget to keep your PCP in the loop - there could be other causes for your SEs!

p.s. Switched to Femara after a year on Arimidex - so far, so good!!! 

BayouBabe

To piggyback on Blessings post above - those of you who own or use a fitbit pedometer, I created a special log on line to record side effects, including a pain scale.  This allowed me to see a correlation between activity amounts, daily activity, sleep logs, etc.  Was a big help in sorting out all of my side effects.