FEMARA

artsee

I was wondering if anyone that switched to Letrozole (generic Femara) has noticed any headaches coming on. Since I switched about 2 month ago I noticed a headache now and then. Never was bothered by them too much before. Today is the third day I'm waking up with it.Moves around and is never in the same spot. I'm one that hates to take pills so I havn't but I will today. This is annoying.

Thanks and make it a great day!

Monty

Fatigue with Femara/Letrozole - tell me about it!  Like Jaycee and Weety I get a strange sensation and I just cannot shake it off.  At work it's real struggle some days, I get up and go for a work, try to fidn a job that involves not being sat down etc to try and avoid falling asleep at my desk, but it's hard.  I talked to my onc nurse and doctor and they said they didn't think it was a SE of femara but what do they know sometimes.  They tested my for thyroid problems, but it turned out my thyroid was overacting for a while which should have had the opposite effect.  My thyroid levels are now back within range but still the fatigue continues.  It's not been as bad for the last couple of months but it's still there so perhaps I will look up that other condition Artee mentioned (I think).  I'm sure it doesn't help being awake every night from 3am onwards.  I tried switching and taking the Femara at night but I couldn't sleep at all then. 

 I also have problems with swollen knuckles.  Also, I have noticed recently that my leg is fatter than the other, never was before - anyone else notice this kind of change.  In addition my onc ordered xrays as I am having problems with my knees and thighs hurting, the xrays came back showing nothing, not even arthritis - go figure - yet some nights I can hardly get to sleep for the pain, and getting up from a squat position is almost impossible without help.  Makes me wonder what the hell Femara is doing to my body.  Anyone else have undiagnosed joint problems?

artsee

Well we can be assured it does help keep the estrogen at bay but as far as helping anything else, that thought goes in the toilet. Yes, my knuckles are swollen in my hands and they hurt.No more opening jars for me. My ankles get out of whack when I walk sometimes. My Onco said one of my calves is bigger than the other. Never noticed that as my legs are pretty skinny. He didn't say anything else about it.

I wake up many times at night but I do take something that makes me rest a little better. Otherwise it's 3 hours of tossing and turning. Now with the headaches....muscle aches...Oh Joy!

jacee

I haven't started taking the generic yet. Since I'm only taking 1/2 a pill a day, (yet got 30 each month), I had about a 6 month supply. I won't be able to stand headaches!! Who can?? The joint pain is what made me got to 1/2 a pill. I was getting trigger finger in 2 of my fingers, and it hurt to do anything. I felt I'd have to get better just to die  My Onc wasn't thrilled with the idea, but knew quality of life is the main thing. It is much better now, but boy can I relate to the squatting pain!!  The finger pain did go away completely.

lulubee- I did try melatonin once. My DH tried some the same night. We were both up to the wee hours of the morning....weird, huh?? Didn't want to try it again. I experienced kind of the same thing taking femara at night, before bed. Isn't that strange when it seems to cause drowsiness all day long??  Nothing makes sense with all this.

flopsy

Weety,  could it be that you are resting well at night.   I recently started having debilitating pain in my shoulder, arm and shoulder blade especially bad when trying to sleep.   Have had it checked out and am suffering from a ruptured disc in my neck.  Meds have helped and am sleeping much better.   When I wasn't sleeping well I would get the same "so sleepy cannot hold my eyes open" if I got still for more that just a few minutes.  Now that I am sleeping better I am not having this problem as much. 

You may be having sleep apnea at night so this is something to discuss with your DR.  Sleep apnea affects many people and most do not know they have it.   You actually have a lack of O2 when you are asleep.   Something to think about!!!

duckyb1

Hi Ladies............also taking Femara................after reading your posts I want to say ......be careful the swelling you have is not "lymphedema"..........it can happen anytime.  It doesn't have to be right after surgery, or Rads...............it come come on, months, and even years later.......it might be wise to have it checked out by a LE specialist.............just a thought

duckyb1

Sorry, I forgot to say the most important thing...................I have LE, so I am pretty up on the whole thing....................have read more books, and articles then I care to count.........and I do have an LE specialist.............just be careful

flopsy

Ducky,  Yes, LE is definitely a concern for this that had nodes removed which seems to be most of us.

I also have LE on my node side along with the ruptured cervical disc on that side so now I am facing decisions on what to do about this new development.   

ktmimi2

There has got to be SOMETHING out there that we can take without all these nasty SE. I have been on Fem for 2 yrs. now...just started generic last July. I had so much leg pain w/reg Fem that my Onc had me switch to every other day. It was working with little pain. Then...the dreaded generic...vag dryness, listless, tired all the time, headaches, low back aches, stiffness in every joint, fingers curled in the morning, bottom of feet hurt now watering mouth. What the heck? When I was having the lady issues, I went off the generic to get in cleared up and bam I felt so great, so much energy, no aches. I just went back on 5 days ago and feel like crap, once again. I am really seriously thinking about not taking this for the next 3 years and try to find a Natural Estrogen blocker. How sad that I even have to consider "taking my chances that the cancer doesn't reoccur" because of this drug that is destroying other parts of our body. Even though we are taking this for 5 years or more, my Onc said there are NO guarantees that it won't come back. Maybe it is time to live everyday to the fullest and feel good doing it. I can't even exercise anymore because I don't have the desire or energy. I have 6 little grandkids and I want to play with them not sit on the couch and watch them play. I know everyone has different levels of SE but this is crazy. For me, I think the generic has worse SE. Don't mean to sound so negative but it does wear on you when you feel terrible everyday and when you are off the meds you feel like yourself. Advice???

duckyb1

ktmimi....................There are many women who have gone from the Brand Femara to the Generic..Letrozole..................a lot have had problems on the generic..............even though the compound has to be the same with both drugs...........the fillers do not have to be........they can use different things as long as they stick with the right compound.

Women who had no SE, began to get some..............women who had just a few, got more, and women who had many SE's got worse..................so there is some truth in this all...........I called the Manufacturer and advised them of this problem, both the generic Co. and the Brand Co.

Several dfferent generic companies make letrozole, but the one I notified was kTazo.........I called Novartis to let them know what was going on with the generic drugs, just so they can make a case about them not being identical in all ways.

I take the Femara..........I refuse to change, and will eat the cost of the Brand name.......It is worth the extra money, however............so far............Medicare has not put the Femara Brand on their new 2012 Formulary..............I have Aetna, and they told me this...............but they also said its possible they will before the year is up.

Good luck, and I hear you about stopping it all..........I have thought about that myself , and if the SE's get worse then the few I have, I will do that..........QOL ismore important then "length of life................hugs.

shortlady

I have been taking femara for just a little over a year.  I have been taking the generic for about a month and have not had any SE's that were not there before. I am achy and have hot flashes.  I hot flashes are not to bad and I have a curved spin and have had to deal with aches and pains since jr. high.  I did have a trigger thumb issue, but it went away when I hit the 1 year mark.  

 ktmiml2: I know some friends that were having problems with Femara and they switched to Armidex and did not have the same problems.  I also know people that were on armidex and switched to femara.  You might see if your Onc. would let you try armidex to see if your SE's lessen.  

Omaz

Hi, I am just coming over here.  I have been on tamoxifen since April and was premenopausal before chemo.  I haven't had a period now for 14 months.  When I see my onc in Nov I would like to try switching to femara - I am worried that he will want me to go longer on the tamoxifen before switching.  Does anyone have any good arguments or suggestions that I can bring to the table at the appointment?  I'll be 53 next month, I don't think my period is coming back and my one and only estradiol blood test showed a level of 5.  I want the 20% advantage of the AI over the tam and I worry about the tam-HER2 interaction.

artsee

Omaz welcome...I can't blame you for wanting to switch. The SE's of blood clots and uterine cancer would be enough to want to make me jump ship. Go to your Onco with a list of questions and concerns. You have every right to.

nanna

weety have you been checked for  sleep apena

csp625

I have been on Femara for two years now with minimal side effects.  I do experience hot flashes and mild joint issues.  One of the side effects I am experiencing seems to be contrary to others.  Instead of hair loss or thinning, I am experiencing hair growth.  Although I do have a nice thick head of hair, there are places on the rest of me that normally would not have hair.  Has anyone else experienced this as well?

Thanks so much,

C

kira1234

csp625,

I also have hair where it doesn't belong. To make things worse I also have the hair thinning on the head. Does anyone know if it grows back after we are off this stuff.

weety

I think the hair in the wrong places is due to the testosterone dominance since we no longer have estrogen to balance it out.

artsee

Weety..you are correct. Estrogen is so good for a multitude of things. Everything gets BAD withought it but what are we to do right?

I do believe the hair will stop dropping after we lose the pill. The generic is much worse than Femara for me when it comes to hair loss. My brush is filled constantly.

kira1234

artsee, I agree the generic is worse for me in so many ways. I had no hair loss with the name brand, my SE are much worse now. I have talked to my Onc, but he has done nothing though he is aware of the SE.

Denise2730

I sit here with my first bottle of Femara, scared to death to take the first pill. Are the side effects worth it? I say no, I only had 1 positive node and I don't want to have worse joint pain than I already do from fibromyalgia. My family and oncologist tell me since I am refusing chemo to at least take the Femara.

This first bottle is not generic but I have a feeling my insurance (Tricare) will only allow me the generic if and when I need the refill. My upper back is already hurting so bad I'm tempted to take one of my Vicodin's. And it's going to get worse with the Femara?!

This sucks! I wonder if men had to deal with all this including losing their masculinity if there would be a cure by now.

Today I hate doctors, oncology offices and men too!

chrissyb

Hi Chiluver,  I take Femara and have done for over a year now with very few side effects.  I have very bad osteoarthritis but the Femara hasn't make the joint pain worse at all.  My main problem is hair loss and sleepiness but changing the time of day that I take the little pill has taken care of a lot of that.  As for the cost of the  real thing as against the generis, I have heard from others in the USA that if your doc marks your prescription for no susbstitutes then your Insurace is obliged to pay.......but you may need to check that out.

If you find that the Se's are too many for you, there are other AI's out there to try.  I was on Arimidex first but that caused all sorts of problems and I was leary of taking the Femara but I'm very glad I did.

Good luck.

Love n hugs.  Chrissy

jacee

Chiluver- there seem to be many who don't have severe joint pain with Femara. We're all so different with these drugs. You could try it for the month and see how  you feel at that point.

Chrissy, I never posted, but followed your travels as if I was reading a novel !! I live just a half hour from Eureka Springs, AR, and my son was married there. We just returned from a day in Branson as well. So wonderful you were able to do all you did. Thanks for sharing.

Joni

chrissyb

Oh Joni, I wish I had known you were so close, I would have loved to meet you while I was there.  Glad you enjoyed my travels as much as I did.

Love n hugs.  Chrissy

thankful4life

Wow.mi was on Femara, and then generic Femara, for about a year and a half. Then I couldn't take the side effects any more, so took a 6-week break. I felt awesome during the break! Then started on Aromasin, which was horrible, so have been off for 2 weeks. I go back to onc. On Wednesday. Will ask her about brand vs. generic.

duckyb1

Chiluver.................If you could go back further in the posts, you would see mine..........I sound like you except for the Fibro............I finally decided to try it after waiting 6 weeks from when I finished Rads.....................so far I have not had any  real problems.........already had arthritis, a bad knee,..............and ostopenia, so I can't be sure if the sometime pain I get is from old problems, or new ones.

The only thing I did get was something they call "trigger thumb", but its not all the time.......before Femara, I had cramping in my feet.........so I can't even say it caused that................I do take it at night, and that might help...............which was advice I got from the good ladies on this site...................I wanted to make sure I did everything to help myself.

If anything develops or gets worse...............I will stop, but so far so good............Now that is the Femara brand..........I will not take the generic............have heard some bad comments about it, so will pay the price for the brand.............good luck..............and remember, you can always stop it.................................

jinky

Today I stopped femara after 4 years and 2 months. Did 5 years tamoxifen . Bone pain,constipation, hot flashes ,tired, thyroid has to be changed every 6 mts, ,colon resection, use 4 senna +4 stool softners or M of M for the last 9 years,osteopinia,heartburn. I am 70 years old and enough is enough. Pray some of this will go away. A couple of years ago I took a 5 week break and I could not believe how good I felt after a few weeks and my constipation went away. Will let you know how I do. Thanks bc hugs jinky

nikola

Started Femara yesterday. When to expect SE?

Anyone taking it every other day?

I had oophorectomy in April and 4-5 weeks later noticed some hair shedding that lasted couple weeks. I just started Rogaine hopefully to prevent hair loss associated with Femara.

Omaz

Onc PA said yesterday that she wants me to go a few more months on tamoxifen to be sure my period is gone forever! before switching to femara.  I think they are shooting for 18 months period free it seems.

duckyb1

Found out that it is definite..................Medicare, thus, all insurance companies in the medicare capacity will not have "brand" Femara on formulary in the year 2012..........Everyone will be forced to take a "generic"....................To buy Femara cash (already inquired) with CVS, Rite-Aid, Walgreen's, and a couple others.........................if I want to buy it myself, it will cost me $1,800. every 90 days...............down to $1,600.............it depended on the Pharmacy you were dealing with.......................

I can't take th generic...........tried itand had bad SE's which I had almost none while on Femara............tried to get it through Novartis because of being below average income, and they told me "we don't give patient assistance" for Femara..................

Could ask my Dr. to switch me to Arimidex which Astra Zeneca, will pay for, but not sure how I will do on that drug..........

Right now I am asking my MO if she can ask Aetna to allow me to have Femara since I had problems with the generic.........will let everyone know how I make out.

lulubee

Ducky, what do you mean by "all insurance companies in the medicare capacity"?

Does that mean we won't be able to get it if we're on Medicare, or does it mean we won't be able to get it if our insurance company is affiliated with Medicare?

Phooey either way....