FEMARA

alaskamama

This conversation is great! I have a female medical oncologist I'd feel comfortable talking to about sexuality. (My breast surgeon on the other hand is male and older and lovely and I think it would be awkward to talk sex with him.) But I don't think you should feel it's petty or inconsequential because others (and heck, you) are facing life-and-death issues. I could say more about the importance of sexuality but this is a public and searchable discussion board... suffice to say, I have come to believe healthy sexuality (whatever that means to each person) is more than just fun, it's integral to our wellbeing. End of lecture!

Blessings2011

O.K., Momine - correct me if I'm wrong, but you were saying things in the nether regions had IMPROVED, right? So all these suggestions about getting help from your MO or GYN would not be for assistance with intimate aerobics, but just an answer as to why the change in status in your lady parts.

I had a horrid issue with atrophy on Arimidex; not so much on the Femara. Also, I use what some of the other ladies have suggested.

If I were seeing my MO soon, I would ask her. Maybe someone else can ask their doc if there can be a sudden improvement in sexual function after taking Femara for a while. (And "why?")

Momine

Blessings, correct. After some initial shock, I actually managed to rehab the whole business a while back. This was a spontaneous improvement, and I found it slightly odd. Still not sure how I would bring it up to the doc. Could be taken as a come-on, no? (half-joking, but still).

CelineFlower

Horrible to read about these "mistakes"..

My onc wanted me on tamox , I refused to take it till after rad tx was finished...he never checked my hormone levels, and i ended up developing blood clots two weeks after rad tx ended... good thing i  didnt do the tamox as it increases blood clots

Now, i have femera.. took one pill then read the pamphlet....should have done the opposite..read do not take if you have high cholestorol.. oy.. gotta call doc this morning.

If we do not stay on top of all this... who else will?

TessaW

Mrs P - I'm glad you complained and switched !   I don't have that option.  Lemmon Holton is really the place to go in this area.  It just bothers me that it seems sometimes the right hand doesn't know what the left is doing.  Don't they read my chart??

Michelle - Pozzie vibes on your ovaries being removed.  Honestly, to me that seems like the easier and safer option after reading all of the side effects of the inhibitors.  I'll have to try your method with the zolodex.  Of course I got the ditzy woman on her FIRST DAY who didn't get the whole pill in the first time she jabbed me in the gut and we had to do it again.  FUN !  (insert sarcasm here).

Alaska - I know EXACTLY what you mean be the phone game.  Again I ask, don't they take the time to read our charts???

Sgreenarch - Honey I wish you could fly here too!  My energy levels aren't too great, but maybe if we both gave them a good right hook it would do the job!       It just sometimes feels like we're just a number, just another "patient".   We're women.  We're individuals, just like they are.  We have hopes, dreams, aspirations, and the daily grinds like everyone else and just want the opportunity to pursue those just like they're able to do and apparently some take for granted.

TessaW

Celine!  I'm glad you caught it after only 1 pill.   I had already gone through a WHOLE BOTTLE before discovering the "mistake". 

Good for you honey!    If I can say anything, it's Keep Yourself INFORMED and don't rely on the medical community to do it for you.

DivePuppy

When I started Femara, my onc told me to use KY every night, and, if I ran out of KY, to use olive oil!  I've followed her instructions, and have not had any serious dryness issues.  My problems have been severe joint pain and hot flashes like I never imagined (and I'm post menopausal).  As others have said, everyone is different!

CelineFlower

thx tessa! still havent heard back from my doc... 

Togetherness

Hello, so glad I found this thread on Femara.  I just started taking Femara this week.  I am post menopausal so sounds like they have me on the correct drug.  The one thing I do have is high cholesterol which I take Zeita on a daily basis for and have for years.  I am wondering if Femara will make it go even higher.  So far I am having fatigue.  I started back to work Pt after being out for six months.  I have to come home and take a nap.  Wonder if it is too soon to be having SE.

MsPharoah

Hi Togetherness, I started taking Femara in August, 2013.  The first two months, the only SE I had was sleeplessness....waking up in the middle of the night and trouble going back to sleep.  I started taking the meds in the morning and that helped, but I still have the sleeplessness occassionally.  At about 60 days, I started having severe joint pain and definitely stiffness when rising from bed, a chair, the car, especially if I had been off my feet a long time.  I still have the stiffness but the pain is gone, thanks to exercise.  I power walk in the morning and mid day....about 25 minutes each and I do a fitness work out 2X a day.  I don't have children at home so I can fit this activity in with no problem.  I believe that with this medicine, if you don't get up and get active, you may find yourself unable to do so.  Everyone has a different experience but I feel strongly if you are fit enough to exercise, do so.   Even if you don't have joint and muscle aches with the medication, the fitness program will help in other areas.

Good luck to you, MsP

chrissyb

Hi Togetherness and welcome.  Fatigue is definitely one of the early SE of taking Femara but you can help with that by trying to take it a different times of day and see what gives you the best result.....ie, the least fatigue.  You may or may not get other SE or they may come and go........not everyone gets the worst of the SE and you will find that those who do not rarely post.  

I have been on Femara for about 3 1/2 years and have almost no SE at all.

Good luck!

Love n hugs.   Chrissy

Eph3_12

Morning consumption of the pill put me into MAJOR fatigue.  I started taking at night after about 6 weeks & reduced that symptom to practically nothing.

alaskamama

Togetherness: I started Femara two months ago. A few weeks into it I felt like I'd been body-snatched by a 90-year-old -- stiff, achy, tired. I am normally very active but it was hard and I was feeling discouraged about the prospect of a decade on what I call old-ladyhood-in-a-bottle (I am 42). After reading this thread I decided to push harder to exercise regularly and vigorously, and I feel MUCH better. I am also doing radiation right now (and my doc says there's still chemo in my system), so it's hard to say what's what, but do whatever you can to stay active! Good luck.

naturegirl2

Hi all!

I've been on Femara/Letrozole for 13 months.  About one month ago, I began experiencing pain/burning in the roof of my mouth.  I went to my dentist on Friday and he said it could possibly be from taking Letrozole since I am post menapausel and taking Letrozole is reducing the hormones in my body.  Anyone having this problem?  I'm also taking Xgeva shots and have been since May of 2013.  My oncol. reduced the shots to every other month as of Nov.2013 but not due to this. He just thought it would be better for me to now do every other month since he said Xgeva has side effects.   My next Xgeva shot will be in March.  Can anyone relate or offer suggestions? Thanks! 

KarenLS

Hi Everyone,

I have been taking Femara for a little over a year now with very few side effects (some muscle pain).  Now,

my scalp has begun to itch like crazy and I am getting large red hard welts on my face!  I am going to call

my oncologist tomorrow, but I was wondering if anyone has experienced any of these side effects?

Thanks very much!

GrandmaV

Sounds like an allergic reaction.  Did you eat anything unusual or new?

KarenLS

Dear GrandmaV,

Thanks for the post.  No, I haven't eaten anything unusual.  I will try and get in touch with my

breast cancer oncologist tomorrow.

naturegirl2

Anyone experiencing burning in roof of their mouth as a possible side effect from Letrozole/and or Xgeva?

It feels like I burned the roof of my mouth with hot soup.  It is keeping me awake at nights as it hurts to lay my head, particularly on one side. This started a month or two ago.   Like I said, I went to my dentist Friday.  He said it could very well be the Letrozole since it is reducing hormones throughout my body.  Can anyone offer any suggestions are relate to this?  Thanks

chrissyb

naturegirl, this is not something I've heard of before.  It is possible that it's a SE but it's also just as possible caused by something else and I think I would be showing it to my doc just to make sure.......besides, he may be able to give you something to relieve the symptoms.

Good luck.

Love n hugs.    Chrissy

lahela

Saw my MO today and she's switching me to Femara - fingers crossed for a smooth ride!

KarenLS

I went to my doctor today because of the welts and blisters on my face and head and.... I have shingles - I am now taking an anti-viral med.  I have some pain; but I did have the anti-shingle vaccine years ago and this should mean that, hopefully, the outbreak will not be too bad.  I wonder if there is a connection between Femara and shingles.

honeybair

Did not know letrozole could cause sleeplessness at night and extreme fatigue.  I have been wondering why I feel so washed out...Anyone have any suggestions about what can be done about these problems?

GrandmaV

honeybair,  Unfortunately that seems to be a common se.  Some have changed the time of day they take their med.  and have gotten relief.  For me personally, it seems that it just took time for my body to adjust, and I force myself to 20 minutes of exercise a day, it seems to help.  My fatigue started getting better after a year or so on femara.

MsPharoah

Honeybair, I also have sleeplessness which is waking up at about 11PM and being wide awake for a few hours in the middle of the night!!  YUCK. I take the medication in the morning and I wear a sleep mask to bed.  This has helped some.  Also, I never get out of bed...if I do, I am a "goner" and might as well start scrubbing floors.    Fortunately, I am getting enough sleep and exercise that I haven't had extreme fatigue like you are experiencing.  It is really difficult to figure out what works for you.  Try different things until you find what works for you and don't give up!  You may need to get some sleep aids from your doc short term so that you can catch up on your rest.

Love, MsP 

Momine

Honeybair, to some extent I got used to it. I tend to fall fast asleep, then wake an hour later and having to spend a bit of time getting settled "for real." 

However, both for fatigue, trouble sleeping and the joint pain, I find that exercise, exercise, exercise is really what helps and it is good for us anyway. Clears my head besides. I aim to get in 10 hours a week. A few hours of that are spent in the gym lifting weights, but most of it is just plain walking, with and without the dog.

Eph3_12

Honeybair-I'm one of the 1s who swear by taking Femara just before bed.  It knocks me out.  When I was taking it in the AM, I was coming home at lunch and sleeping and could still barely function.  Problem for me was solved when I started taking it at night.  I've been on the pill 4 yrs, 2 months & 37 days & out of that timeframe I've been taking it at bedtime for all of it except the 1st 50 or 60 days.

Anonymous

Anyone having bad acid reflux with Femara? I've started my third week and my reflux is awful. I take the generic for Protonix and it isn't working anymore. This is my 3rd AI and although I'm not having the horrible joint pains that I had with the others, I still have problems with my hands. When I wake up, they're swollen and drawn into claws. Takes me a while to get them working. Does anyone think the reflux and claw hands will settle down after I've taken Femara for a while?

CelineFlower

started a thread to discuss this new problem...

vertigo.. 

emergency docs said it had nothing to do with starting letrozole less then a week ago... but it seems they are wrong

anyone here get extreme dizziness? its so debilitating

chrissyb

CelineFlower I have had vertigo off and on over the last three and a half years, the last in October last year.  It was so bad that if I moved I vomited and it lasted for about two weeks.  As you say, debilitating.  This last bout has left me partially deaf in one ear.......really not fun when my hearing was perfect prior.

It is a problem that is suffered by many but vertigo is listed as a SE and it really annoys me when docs do not acknowledge SEs that are listed.  Considering we rely on their 'expertise' I would prefer them to say they didn't know rather than say a definite no it's not related.........grrrrrr!

Hope you feel better soon.

Love n hugs.    Chrissy

CelineFlower

thx chrissy...

and i agree its very frustrating...

only thing to do is stay on top of it ourselves... 

That must really be rough loosing hearing ... i use gravol for the nausea.. but now i feel stoned all the time..

this is no life.. sigh