FEMARA

civic2846

Garden G , Yes it is as long as it's working.  I took tamoxifen for three years prior to my hysterectomy.  Then a year of arimadix it had almost paralyzing side effects switched to femara in august 2013 having a barrage of side effects :-(  I don't feel like any one is taking me seriously about the way I'm feeling. I felt like taking a little break mat be the answer for me. So far I'm feeling pretty good.  I'll go back on in a week. For now I'm just going to enjoy how I'm feeling ;-) jacee was your break monitored by your Mo or something you did ?How did you feel during ? I really do try and go along with whatever the plan is but it is very important to me to feel heard. No one knows our body the way we do and I gage a lot on that. I am always interested in what others are doing on their journey and how it is affecting them. As always thanks for any input. Peace & love  to you all ♥ TinaT

Vicks1960

I have been on Letrozole (generic femara) since Nov. 2011.  The past few months have had trouble with trigger didget on both thumbs and both middle fingers.  A few weeks ago my hands started hurting so much that I have been unable to hold a glass of water, so when I saw my MO 2 weeks ago yesterday, I asked him about it and he suggested a take a 2 week break then call him with how they are doing.,  My hands have improved a lot, not painful like they were (had trouble using my cane even).  When I called in yesterday, his assistant told me to stay off of it another week.  then to go back on it and use what I still have on hand.  If the discomfort starts again, they will order a different brand.  He says there are 3 brands available.  and each person has different reactions.  

Other than this, I have had some SEs but they were livable.  

Vickie

gardengumby

The only thing I would say is that I believe there are more than three brands available.  I've (personally) been on three different ones (not through my choice, just the happenstance of my pharmacy).  The one I'm on now has been the easiest for me, but my hands hurt the most with this one.  I can take the hand pain better than the extreme back pain I was experiencing, though, so I'm not going to complain (too much ) at least not right at this moment!

Anonymous

I have been taking Arimidex and then Femara for almost 10 years now.  My onc does allow me to take a one month break twice a year when I am traveling.  I have a friend who lives in Australia and she takes Femara for 9 months and then is off it for 3 months..  It is a sort of trial I think.  She has been doing this for two years now.  It is under study to see if it improves efficacy.

Tomboy

notagaintoo! that is fantastic! i am so happy for you and your friend both! you are still stage lllc?

Anonymous

Kathec, I had 9+ nodes and they were matted together and so on.  I am on the cusp of stage 3C and my onc has me listed as such.

jacee

gardengumby...I am thinking when Vicks said her Onc said " three brands", it was probably referring to letrozole, Arimidex, and Aromasin.....rather than all the different letrozole manufacturers. However, I can tell a difference somewhat when the pharmacy changes from time to time, too!

Tomboy

Jacee, i do believe you are possible right about that. last time when i was at a bc group that i attend in person, some of the women were giving this one woman a rather hard time i thought, for wanting to stop femara after one year. the vocal ones were telling her she had to stay with it and not change, after i had told her that i had tried arimidex, then tamoxifen, and now femara. they were under the impression that you shouldn't change. but i did try to convince the woman to talk to her onc, and he could try a different one.

notagain2, sounds like you are unofficial part of a test to see what happens with 10 years plus! and do you feel pretty good? i know chrissyb, whom i have not actually seen here for a while, has been on them a long time too.

chrissyb

Hi Girls!  Just recovering from a total knee replacement so haven't been in for a few weeks.  Slowly getting back on my feet so that is a good thing.

Yes, I've taken both Arimidex and Femara (brand not generic).   Being stage IV means we stay on a med for as long as it works and there is no progression.  After fifteen months I had progression on Arimidex and the whole time I was on that I was deeply depressed, hurt all over and was in general a misery guts and my children told me.......lol.  Anyway, after the progression which says the med is no longer working my doc changed me to Femara.  With in a very short period, I felt almost back to my old self, no bad aches or pains and walking was once again easy to do with out having to use a cane.  Over the period of time I have been on Femara I think I have run the gamut of SE but they have not stuck around for long.........I've had the dizziness, the fatigue, the ringing in the ears, gone deaf in one ear so now wear an hearing aid, had the sore hands and feet, felt like I was walking on glass they were so sensitive, had the hair thinning and the nail breakage as well as the weight gain.  Sounds like I'm a misery but in actual fact, none of the SE have hung around for long and they never came all together, well not that I noticed, and I have been able to live my pretty normal life.

I always say that I'm one of the lucky ones that doesn't have too many SE but when I think on it I've had most of them but with a little management as in diet, movement as in exercise (not strenuous as I'm too old for that crap.....lol) just generally keep moving, a happy outlook ( well that's just me normally) and plenty of rest........I find that if I don't get enough good quality sleep I feel like the dogs dinner, life can and does go on on a pretty normal plane for which I am truly grateful.

Femara and I are having a great relationship and have done for almost four years now, it has gotten me to NED and is keeping me there........long may it last.

New girls on this powerful little pill try to look at it as your best friend and as we know even best friends have their flaws but we love them anyway.  We deal with whatever comes along be it good or bad within that friendship and so should we when it comes to our friendship with Femara, it's not all good and it's not all bad........somewhere in there it is doing what it is supposed to do and that is to keep us cancer free.  If you find you are better on a particular brand ask you pharmacist to get that particular one for you.  The difference in the brands is not the base drug as that must by law be exactly the same wether you have the original or any of the generics but the difference comes from what the different companies use for fillers........some contain lactose and if you are sensitive to that you will have some reactions and that is how it goes...........that is why I say try all the brands and find one that works well with your system with as few SE as possible.  It may take some time to do that and monitoring your reactions a bit of thinking and writing and comparisons but in the long run, you are going to find the one that protects you with the least SE possible.

OMG!  I think I've written a book.....lol.  Sorry for being so long winded about all of this but the doc would not prescribe this drug if it weren't important and if they didn't think it could keep us safe, it is up to us to find the right one for us and learn from others what works for them.

Good luck girls!  Hoping your SE ease with time.

Love n hugs.    Chrissy

peacestrength

Chrissy - sending you healing hugs for your knee surgery recovery.  Thank you for your post above.  I agree about Femara and comparing it to a best friend.

lassie11

Thanks Chrissie - I hope that knee is coming along as it should.

I support all of what you said, and particularly the part about sleep. For me, getting enough sleep makes everything else better.

tryn2staycalm

Chrissyb- I am so happy to read your post and hear the positive.  Yesterday I started the Palbo drug trial with its mystery drug also the Letrozole (Femara).  I have a couple of best friends now as the studies coming in are that these 2 drugs and working wonders together.  That is if I'm one of the lucky ones getting the Palbo and not the placebo but for sure I am getting the Letrozole.  I accept that there are a lot of possible side effects, glad to hear they come and go!  Hope they are liveable and give me the results you are having too!  Thanks for sharing and your timing was great for me. 

Good luck with your knee replacement!

Cathy

Anonymous

Chrissyb, your story is remarkable!  Thanks for sharing it.  It is good to "meet" you.

Yes, I do feel like Femara is a good friend, one who tries to help me every day.

Blessings2011

Chrissy! Congratulations on your bionic knee  - May you recover quickly from the surgery, and return to the activities you love. xoxoxo

thinkpink4ever

Chrissy, love your "book", my friend.  You have awesome insight, and an even more wonderful outlook.  Keep on keeping on with your knee replacement - may you dance again soon!

One love,

tp4ever

gardengumby

Jacee, I'm sure you're right.  It never crossed my mind that the three different AI's would be the three "brands".  Shows how rigid my thinking can be sometimes. 

Chrissy - good to "see" you.  Like you, as long as I get enough sleep (which for me is about 11 hours a night) the SE's don't affect me too badly, I have enough energy and have a pretty good outlook.  That's why I quit fulltime work.  I really like this retired life - though I'm doing some contract work right now, it's mostly at my pace and on my schedule.  If that changes too much, then I'll have to have a chat with my "employer". 

Anonymous

Kathec, I do feel like I am part of an unofficial trial.  My onc has a couple of us who are staying on the Femara indefinitely.  I am too afraid not to take anything at all and so is my onc.  I feel like that little pill is my safety net.  Honestly, I can't imagine not taking it at this point.

tryn2staycalm

Well the mild but persistent nausea started.  Took the prescription nausea meds.  Is this common for Femara/Letrozole?  Or is it the mystery drug?

Cathy

thinkpink4ever

notagaintoo, how long have you been on Femara thus far?

One love,

tp4ever

cakes

Thanks Chrissy, your "book" is extremely helpful. Here's to quick healing for that new knee. 

Tomboy

welcome back chrissyb, and thanks, and i hope you love your new knee!

notagaintoo, i think for us  being kind of advanced, that is probably what docs will do, more and more. i hope it is as good to us, as it is for chrissyb.

BigDBeatingBigC

I am going to chime in here, have not posted for awhile.  I have only been on Letrozole since February.  I quit for 3 weeks in April as I was having severe disequilibrium problems that kept me off work a few days, sent me to the ER (they could find nothing wrong), and all in all I felt absolutely miserable for about a month.  Finally went to an ENT who did help me.  I had to find out if it was the Letrozole that was making me miserable, but it was not.  I went back on it, although my MO was unhappy that I took it upon myself to go off of it for 3 weeks.  So far, I have not had any SE's.  I have a touch of arthritis in my shoulder and neck but even rarely those give me just a twinge here and there at times.  I was expecting to have a lot of SE's with Letrozole but it has been very good to me.

I always enjoy reading your posts, Chrissy, you are an amazing lady.

tryn2staycalm

Big D - Good to know!  As a Letrozole newbie in a clinical drug trial I am digging for info and love to hear the positive stuff!  Thank you.

Cathy

dventi

BigD.... find your post interesting. I also, had disequilibrium on Letrazole.. although MO said none of his patients have had that SE... Oh really? Meds say " Do not operate machinery may cause dizziness"

Have an appt with ENT next week too as one ear feels as if I am on a plane... clogged... Just curious.. How did ENT help you?

 

cp418

Chrissyb - sending healing vibes for a speedy recovery from your surgery!  Love you book!!!  Yup - we may complain about this "powerful" little pill but it has helped so many of us.  Everyone responds different to these AIs regarding side effects and tolerance level.  Trying the various generic versions is a good idea regarding the fillers used - the main ingredient is the same but filler may be the issue.  Interesting as I've come across more posts for patients who complained of issues with Arimidex and then switch to Femara.  There must be a difference.....

honeybair

I take a generic version.,letrozole, and have been able to tolerate it well. I do have stiffness when I get up in the morning, very fleeting hot flashes, and ache on the outer part of my thighs when I walk for exercise.  I have  more discomfort from my masectomy than anything else..shoulder pain, neck pain and a burning sensation across my chest wall when I lie in my bed.  I sleep part of the night in my bed, and when I get really uncomfortable, just finish out the night in my recliner.

I am so sorry so many of you have such severe reactions to these drugs.

Anonymous

ThinkPink4ever, I have been taking Femara for almost ten years.  In fact, it will be ten years in late January.

BigDBeatingBigC

Hi dventi.  First, when I say the word "dizziness,"  that is not really the correct word.  When I went to the ER they gave me medicine for vertigo, but I know what that feels like, and that is not what I had.  I had a brain MRI, full spinal MRI, brain CT, and nothing was found to indicate the disequilibrium (that is the best description of what I had).  My neuro doc thought I might have a cardiac issue, but wanted me to see the ENT first.  The ENT tested my hearing which was perfect, and decided to put me on a diuretic called Triamterene-HCTZ.   He said he was going to diagnose me with Meniere's disease, although he was not sure that is what I have.  He said my symptoms were mixed, but he said if the Triamterene worked, then maybe we hit the jackpot.  The disequilibrium went away completely and I have not had any issues since then.  I go back in a couple of months for a follow-up and another hearing test.  As long as this works, I do not have to go to the cardiologist.  My PCP does not think I have any heart issues.  I have had several EKG's over the past year and all have been fine.  However, if the symptoms ever return, then I will see a cardiologist.  But I am 100% certain that what I had was not due to Letrozole.  Most every medication I have ever taken has dizziness warnings on the label.  I was just so happy it was not Letrozole as I did not want to try another medication.  My MO is convinced that Femera/Letrozole is the best in terms of SE's for most of his patients, but as you know, we are all different.  I hope you have found some relief.

rivercaralee

Hi...Big D and dventi,

I had the vertigo (room spinning on moving head in certain ways/times).  I called my oncologist and told him all the symptoms, achy flu like, muscle and joint pain, spacey, ringing in ears, (like very distant crickets) and the dangerous vertigo.  This was after just 8 days on it.  He told me to stop for a month "to see if these symptoms are from the Letrozole"  Ha ha ha, I was fine before, and 24 hours on, it has all ebbed away.  I went to my Primary Physician the same day and she noticed congestion in one ear.  I think I shall conclude, from this and other posts, that Letrozole puts some people at risk of inner ear infections (or inner ear problem of some kind).  

Next stop, Tamoxifen. I guess I'll be changing threads!  I just want to say that reading and being able to vent here really helped me.  I appreciate the wisdom of all who have posted here.

intothewoods

I just want to chime in on how good Chrissy's "book" is. Looking forward to many more! Wishing you a speedy recovery.