FEMARA

chrissyb

Hi Rivercaralee and welcome to this forum.  As the heading says, this thread is for those using Femara/Letrozole regardless of stage so don't be afraid to ask question or have a grump, we are all fighting the same beast.

If you are generally into exercise you will find that movement will be to your advantage as it seems that exercising does go a long way to relieving the joint aches and pains.  You will find that most of the women who post here are the ones that are having the worst SE but don't let that put you off as not everyone has them and it's good for others joining this thread to know that is it possible to take Femara/Letrozole with little and easily managed SE's.

Good luck with getting that first little pill down, it may be little but it packs a mean punch!

Love n hugs.    Chrissy

micheleboots

Welcome new ladies,  It has been a while since I posted  Just popped into say hi.  

Michele

lassie11

rivercaralee  If you read all the possible side effects, you can make yourself crazy.  You will get some, you won't get others and most of them will come and go.

I've been bragging about coming to the end of my five years on Femara. There have been some issues - and all of them pale in comparison to getting another round of cancer.

tryn2staycalm

Hi chissyb!  I won't be far behind you river!  Just about to jump into a drug trial that Letrozole is a part of.  Here is hoping we manage it well! 

Cuetang

Hi ladies-- joining the femara bandwagon here.  I'm pre-menopausal, but my doctor put me on Lupron + tamoxifen for the past 6 months, until we found out that I had a genetic predisposition to uterine cancer (so buh-bye tamoxifen).  I gained a buttload of weight on this combo, but had relatively few side effects.  I know not everyone gets the side effects, but I was sooo hoping that weight gain wasn't one of the possible ones on femara (wishingful thinking on my part!).  I haven't had a chance to read all the stuff in this thread, but hopefully I'll tap into you all for advice when the SEs do kick in.  Anyhoo--happy Friday everyone and have a great weekend!

tryn2staycalm

Cuetang - Thanks for the welcome and I'm with ya on not wanting the weight gain s/e!  Although that wasn't the issue with Tamoxifen but rather the extreme hot flashes and sweats are what I'm dreading again!

Cathy

gardengumby

I haven't had weight gain, per se.  But have had an inability to lose weight.  Frustrating.

Scottiee1

Hi ladies....regarding weight gain....I've been on L for two years and a bit and was feeling quite smug as I was actually losing weight at the beginning and then it leveled off.  I could eat whatever and never gain an ounce.  NOW.....lol....in the last four months I have had an appetite that might require me to take on a second job rather than retiring, which I'm about to do this month.  I've gained about twenty pounds during this time, despite watching my diet, moderate exercise and running up and down three flights of stairs at my school.  

livin

I've been on Femara (letrozole) for 2.5 yrs and I'm having really bad short-term memory loss to the point of it being the main factor in losing a job. My brain just feels fuzzy. I start a new job Monday and I'm very concerned about this. I checked the Cancer Math site and it shows that taking letrozole gains me 1.2% chance of recurrence (not much). I had mucinous cancer and it was completely removed, nodes were clean. Stage 1, Grade 2, ER+, PR+, HER2-. I'm planning on stopping the letrozole because of this one main SE (there are others) and just wanted input from others who have been there.

Tomboy

i hardly eat anything, and i am very active, and in one year of hormonals, have gained 12 pounds. i am not liking it, and plan on amping up and perhaps joining a gym, which i really can't afford. more disturbing to me are when i have bad dreams or depression. i did not have them on arimidex or tamoxifen, but still i think femara is kinder to me than the others. maybe you could try one of them, or get a small break? Talk to your doctor, he may give you his blessing to stop! that seems a very small chance of recurrence to me..

Scottiee1

livin.....my short term memory has become extremely bad since starting L.....I know the fact that I am almost 67 is a contributing factor but it has embarrassed me many times as an English teacher having a moment writing something on the blackboard and forgetting how to spell the simplest of words.....ie....one L or two!!!!!.......I am retiring this month but honestly I don't think I could survive another year teaching, just forgetting too much.

intothewoods

Livin,

I hear  you! I've been on Femara for almost 3 months and was/am very worried about the SE. So far no joint pain, mild hot flashes every now and then but I am very concerned about memory. I just finished rads and worked the entire time so that might have something to do with my noticeably worsened memory. I'm 57 so some memory impairment might be that but I am concerned. I have the type of job where I need to remember lots of details and have information bombarding me constantly.

Yikes! 

livin

Yes. My job requires me to be alert constantly, which I'm not anymore.  I'm 62 and my brain was great before letrozole. Has anyone else stopped taking it? How did you make the decision to stop?

lassie11

 

Tomboy

lassie! haha! you forgot to write something! haha! (you know im just kiddin, right?)!!

alaskamama

Hi friends,

My understanding is that the potential effectiveness of Femara depends on one's cancer's particular characteristics, such as (not necessarily in this order) (a) the stage of your cancer -- it's more important/effective at later stages than earlier; (b) how strongly estrogen-positive one's cancer is; and (c) other characteristics such as biomarkers, aggressiveness, etc. of one's particular cancer. 

My oncologist has told me that for my case, Femara is extremely important -- that it will cut my substantial risk of recurrence in half. (According to the MD Anderson calculator I found, even with Femara my recurrence risk is 65 percent within 10 years -- I didn't enter my info w/o Femara). 

This said, I personally believe doctors don't know and can't know everything -- we have to educate ourselves as best we can, listen to our own bodies, and find the plan that works for us. I wrote about this in a recent blog post called "Cane toads" (cane toads are a nasty pest in Australia ... they're not a metaphor for cancer in my post but for the treatment...):

alaskamamaruns.blogspot.com

Best best best wishes to you all...

rivercaralee

Thank you lassie11 and chrissyb, and others. It is so helpful to hear from those taking it.   Well, not much to report after just 3 days but I am going to be counting each day of precious life going forward! Has anyone had the sudden onset of dizziness? I do drive my teenage son around quite a bit these days...is it something to be concerned about from that standpoint. Don't want to be a road hazard! 

Tomboy

i did get a little dizzy a couple times the second month, but only while on feet, not sitting, lying, or driving.

gardengumby

I've been on letrozole for 2.5 years now.  My memory sucks - but it hasn't been a progressive thing - in that it's not continually getting worse - it seemed to level out.  My husband, bless his heart, is very supportive of me and encourages me to write everything down.  I've become a list person.  I know that doesn't work for all things, but it certainly does help.  I still walk into a room and wonder what the hell I went in there for - or become distracted and start doing something else - but that's not really the worst thing in the world, and I can put up with it.

Regarding the dizziness, it hasn't happened to me very often.  Never has happened when driving, but I have had occasional dizzy spells.

lassie11

Oh crud!  I was going to write something about my memory and then decided not to and then thought I'd got out of it without leaving a nothing message and there it was. So maybe there are times when my memory isn't so great.

On the plus side, I am taking part in a dementia study (as a control group person, not because anyone thinks I have it) and did a cognitive function test. When I asked the person if it would be all right for me to drive home, she said yes, that I had scored in the normal range. The next test is six months hence when I will have finished Femara for three months. It will be interesting to see if there is any improvement.

If there is improvement, maybe my bridge game will improve.

 

Tomboy

lassie, i believe you are gonna be fine! do you do crosswords, or read? there is a thing called lumosity online, that is really fun to play, and really is supposed to be great for our memories. it is free for a long time, and great fun. and there are word games here on bco, that will help keep you on your toes, too!

lassie11

Yes Kathec - I have luminosity, play bridge, read newspapers and try to be somewhat sociable.  But will I be better after Femara?!

tryn2staycalm

I just have to put my 2 cents in here.  To all you ladies who think of stopping Letrozole or Tamoxifen or whatever your on... Iike I did... think twice...or try another one.  Had I not said Tamoxifen was making my life unbearable a little over a year ago I may not be where I am today.   Two small spots were found on my left lung about a year after finishing treatment.  Unknown if it was the big C or not the protocol I was told was to follow up with cat scans to see if they were growing.  For 2 years (while on Tamoxifen) there was little or no change.  I was told that I was fine and could go off the Tamoxifen since there had been no change the spots were probably scar tissue.  Nine months later a follow up cat scan showed extreme growth and had spread to the other lung too.  That's how well Tamoxifen had been working for me and I just wish I could go back and switch on to something else.  I know this may not be the case for everyone but these choices are so important and we can't go back and change them!   Wish we could!

Cathy

peacestrength

Cathy - Thank you for your wise words.  

I do have a question:  Does anyone else have back muscle pain while on Femara?  I never had back pain issues before Femara.  It seems stiff like my other joints, primarily in the morning.  It started about 2.5 weeks ago.

Momine

peace, I have all kinds of weird aches and pains that come and go. However, because I have gotten more disciplined about exercise, my back usually hurts somewhat less than it did before femara.

peacestrength

Thanks, Momine.  I noticed last night after I walked/ran, my back pain was better.  It's so hard to know what pain I should be concerned about.  

honeybair

Like some of you, I have noticed brain blips, and when that happens, I worry that I may be developing alzheimers which my 89 year old mom has had since her 70's.  So I am relieved to learn that  this drug can play tricks on our memories.  As far as the physical effects, mine are minimal and I plan to take the drug because I believe it to be the first line defense against a recurrence.  Perhaps had I taken the tamoxifen 13 years ago after my DCIS, I might not have had this recurrence. I hear you loud and clear, tryentostaycalm. 

Tomboy

bless you, tryn2staycalm. but how come you cant go back onto tamoxifen if it was working so well? i kind of know that the cells become smart or resistant to it, over time perhaps, but if it works that well! i am so sorry that you did progress, but it may have happened anyway, and i wouldn't beat yourself up about it. its a mystery, cause i see many stage four women with alot less nodes affected than me, and wonder about that too. then, i also notice many women reccur  or a new primary, a year or two after finishing hormonals.

intothewoods

Tryn2, I believe you are starting the Palbo trial. Maybe that's why you say you can't go back on the tamoxifen. Anyway, Kathec is correct; honeybair and you should not look backward or beat yourselves up. I was diagnosed in 2007, had bilateral mast, did my 5 years of tamoxifen and looky what 2014 brings- a spanky-shiny local recurrance with unclear margins and bone met to a rib.

Kathec is correct too in saying it's all a mystery. So far since my diagnosis I have been lucky to remain living in gratitude. That is also a mystery.

tryn2staycalm

kathec - ty... I am suppose to be starting a drug trial and if my onco put me back on Tamoxifen then I wouldn't be accepted into the trial as you can't yet have been treated for your mets.  My onco said one of the drugs in the trial everyone gets may be even better than Tamoxifen (Letrozole) and the other drug is known as Palbociclib and it is randomized as 66% get it and 33% get a placebo.  My onco said the feed back coming in is very positive.  And yes your very right.. one oncologist here in London said take 100 cases of breast cancer and you'll have 100 different cancers. 

intothewoods - yes it is a mystery and yes that is the trial (hopefully Thurs. I start) as long as the ECG's and bloodwork is ok.  Hopefully your cancer is very very slow moving!

Cathy