FEMARA

jittersmom

I had an appointment with my MO today and told him of my shoulder pain he sent me for xrays all looked good so he said go off letrozole for 2 weeks then see if it improves then we will go from there. I hate to switch again i was on Tamoifen and I was so depressed, never smiled laugh etc. so mentally I feel better on letrozole. So now I wait and see.

Lily55

Yes me

Galsal

Have to wonder if it's truly related or coincidental - switched from Letrozole to Aromasin recently.  The hands/wrists are getting better slowly - not quite as swollen and less painful.  Either the RA flare is subsiding or the Letrozole effect is wearing off.

If it becomes a now and then thing at a low level of discomfort/pain, I can live with that.

jittersmom

Galsal.....my hand were so bad the first 2 weeks i was ready to quit,but then they got better. My concern is that stopping it for 2 weeks would my hands go through hell again? my MO says no! we'll see

artsee

Ladies I'll still be 'lurking' on these threads and will definately come back to report. Wish me luck.

gardengumby

Really really good luck, Artsee!!!

Eph3_12

jittersmom, I took a 6 wk break from Femara from TGiving '10 to New Year's.  It was my own experiment.  the problems I was having before I went off have never come back.  I have a few other glitches, but they are not continual & aren't so annoying or painful that I can't handle it.

Scottiee1

Artsee....I wish you all the luck in the world.

Linda-Ranching-in-the-mTns

Howdy all -- I have lurked via smart-phone but not posted for a long time -- just checking in to say I have been on Letrozole for 5 months now -- and 'STILL NO SIDE EFFECTS!'

This seems important to post occasionally for new women coming on here -- just a reminder to say that most women who post here are interested in posting because they DO have SE's -- but there are many many more who have negligble SE's who are just out living their lives, and therefore don't even think of posting that 'all is well'

It is wonderful to have this place to get information, support, and help.

My best to everyone

Linda

Eph3_12

Yay Linda.  I have side effects, but mostly negligable, so I choose to ignore them when they pop up.

Linda-n3

Linda, same here so far. I am starting month 4, doing well. I think each of us responds differently to different meds - I couldn't handle tamoxifen, many other women do fine with that - so I was very surprised and pleased to be able to do so well with letrozole, and am glad I gave it a try despite my overwhelming fear of it initially! I also think that if you find ONE drug that you can tolerate, it makes you more willing to try others with less fear if you need them. Best wishes to those starting this drug.

micheleboots

Hello Linda.  Only just started, but so far so good.

Galsal

Good to hear that, Jittersmom.  The swelling in the hands has gotten some better, noted by others at work, although not yet gone.  Will it ever?  That's the 60k question.  Considering I felt ready to have to go out on disability before and have far less pain along with less swelling, this is feeling pretty darn good.

calm

Scottie I was interested in your comments about Biotin to help hair-thinning and what your Dermatologist said. I have been taking 5000mcg of Biotin daily. I must say my hair does not seem to be thinning any more. I also changed shampoos to Argan oil. When I went infor a cancer checkup I mentioned my thinning hair--but the doctor said itis just as likely age-related as anything else. Anyways, it has stopped. other than that I haven't had any real issues with letrozole.

I would also like to wish you well Artsee--seems like a long haul to take these medications--another couple of years for me.

Lily55

I was fine on letrozole for first five months but it went downhill from then sadly, as i did want to take it as it has best success rate for lobular.....am now on a break from it and hope dont get same thing if/when i go back on it



Really i just want my life back not that of an unhappy old feeling and creaky decades before time woman...........

gardengumby

pretty creaky alright!!!  My knees just ain't what they used to be - nor my back - nor my feet - nor my hands and wrists....  but I don't seem to have cancer, and that's a pretty big plus in my book.

Biotin helps my hair and nails.  I also use Argan oil after shampooing/cream rinse, and that seems to help.  For shampooing, right now I'm using a Biotin/vitaminB shampoo - but I can't say that it's helping or not.  My hair doesn't seem to be any thinner though - so maybe it's doing good, and maybe had I done nothing it would have stopped on its own - what do I know...

Chilly1nPhilly

I have been on letrozole since January. I feel like I need a good oiling head to foot. It's hard to get up and I'm very stiff. My hips ache at night and keep me awake. I have tinnitus, and my energy level is unpredictable. I feel lucky to have made it home from work today in one piece. In the future I will just pull over and sleep. Oh well. Better than having a recurrence.

Vicks1960

Chilly1inPhi,

Keep hanging in there girl....I am sure it will get better.(at least that is what they tell us)  I have been on Letrozole for 18 months and still put up with SEs, but it sure beats getting a recurrance of the BC.  Part of my problem is some arthritis too, and I find that changes in weather have an effect on the achiness....

Fortunately, I am retired and can take a nap when needed, which seems to be most every day. 

Vickie

chrissyb

Chilli and Vicks, taking fish oil and condroitin does help with those aches........



love n hugs. Chrissy

Lily55

I had severe aches and no oiliness despite taking fish oils, i cannot take chondroitin..

jittersmom

Chilly 1.......... great way to descibe it needing an oil can! I now have a great visual of the Tin Man from the Wizzard of Oz ....OIL Can ,OIL CAN!!!!! lol atleast my smile doesn't need oiling!

have a good day everyone!

Vicks1960

I too, have taken Fish Oil and Chrondroitin for many years...Don't even want to think about what it would be like if I didn't...

HLB

Does anyone have problems with hair other than thinning? My hair is not falling out but for the past week it has been so flat I can't do anything with it at all. I washed with baking soda for 2 days in a row to make sure there want anything built up and its still SO SOFT. I tease it to death and it still just clings to my head. Just trying to figure out what could be going on with it. Can't think of anything I'm doing differently for it to suddenly be so bad. I thought maybe the letrozole? I've been on it since july with no other SEs. Also XGEVA. Maybe one of them is just building up in my system?.

GrandmaV

HLB - The only thing I've noticed is my hair has been a lot dryer since starting letrozole.  Skin is a lot dryer too. 

Scottiee1

Hi gals, yes me too!!! Had the thinning and Biotin is helping with that. My skin and hair

are extremely dry thanks to L and no matter how much coconut oil , Argan oil, conditioners...whatever, nothing really helps, even when I leave the oil in overnight.

Ah yes, BC, the gift that keeps on giving...lol

HLB

Thanks for the info. I've noticed my hands being unusually dry sometimes but nothing else. I don't think my hair is dry. Its like when the wind has been blowing on it all day, limp and dull and hanging in my face. It feels like its not dry enough, if anything. But not oily either. Maybe I just need a haircut idk.

sgreenarch

Hi,

I am apologizing in advance if you wonderful ladies have already covered this topic. I've been on Femara since January 2013 after 2.5 relatively easy years on tamoxifen. In the last two weeks my stiffness and achiness has gotten much worse, dramatically and suddenly. I'd even tough that out (have ILC and am determined to stay on Femara come hell or high water as I had no other treatmt and onc says Femara is best for ILC) if it weren't for the sudden onset of rough hot flashes. Here's how they happen: I get this feeling of anxiety (DH, physician, says that's the adrenaline) then the hot flash which can range from mild overheating from waist up to eruption in sweat all over. Then I get chills. Finding that I feel like my internal thermostat is on the fritz. Have hot flashes in cold rooms and chills in the hot sun (quite hot over here.) When flash episode is over I feel tired and a bit out of breath. This happens more when I'm overtired and stressed but sometimes even every 15 mins! Eat well, exercise and take omega 3. Don't want to take any more meds (tho can finally understand why women were tempted to do HRT.)



This sound familiar, normal (our kind of normal.) just need some reassurance.



Thanks, Shari

Momine

HLB, I got a leave-in conditioner cream made with olive oil and it really helped. I used it a few times. Try to find some kind of nourishing oil hair mask kind of thing and use it a few times.

Lily55

Shari i had exactly those flushes and chills but after first six months did start to ease a lot



I have been off letrozole for a month and realise it is largely responsible for my low feelings, feeling ancient and decrepid, fatigue, even some of the trauma stuff it seems to trigger as feel much lighter now and slowly getting more and better sleep......



I find it strange it is one dose fits all as we are all different weights shapes and sizes.....

chrissyb

Shari, the hot flashes are very normal but awful.......sorry. A lot of girls get a prescription for Effexor which is an anti depressant that seems to work for some people in controlling the flushed and makes life with Femara a little easier.



Love n hugs. Chrissy