FEMARA

Vicks1960

Stage IV ladies..... YOU BET  celebrate as much as you feel like it.  

Vickie

KiwiCatMom

Of course, I have been referred to as a ding bat!  

MargoChanning

Vicks 1960 - I have a friend who has been on Arimidex for over 9 years; she had had a recurrence after 1 year, the 2nd time had 2 tumors, 1 invasive and she had chemo in addition to rads.  She also has family history, mom and older sister, although her mom recovered from breast cancer and lived another 20 years before passing from something else.  In any case, my friend's doctor said as long as it seems to be working for you, keep taking it.  I asked my MO and he said the standard of care is 5 years but a lot of doctors are prescribing it longer since the latest research is showing it's effectiveness against recurrence.  So, it's the best thing out there, but we have to wait for long term studies on possible damage from long term use.  

Tammy_M43

It would be interesting to know what makes the side effects come and go.  Is it something we can manage by what we do?  

I'm on holidays at the moment and have felt emotional and had warm flashes.  It should be exactly the time when this doesn't happen BUT although I'm relaxing and walking, I'm probably not eating as well and doing less exercise??

Food for thought!

gardengumby

Visited the eye doctor today and he said I'm getting cataracts - looked - yup - a known side-effect of letrozole.  No one in my family ever had cataracts, and according to my doctor I'm awfully young for them.  Hate this pill.  The other side-effect that I've begun recently is dizzy spells.  I'll be sitting doing nothing and all of a sudden get dizzy.  So fun. 

Congratulations Eph!!!  I have 2 years to go.

KiwiCatMom

GardenG - funny you should say that.  I've been incredibly dizzy the past couple of days, like head-spinning dizzy. Not happy about having to fly tomorrow if this keeps up.  Also not happy about driving to the airport and home again if this keeps up (it's about 90 minutes away from home).  

chrissyb

Garden, At my last optometrist appointment I was told that I have the beginnings of cataracts as well.  He also said I was was young for this to happen but he knows I'm on Femara and he was the one who told me that they are a SE that is seen but not that often.  I, unfortunately, have then run in my family as both parents were dx with them and had them removed.

I agree with you all about having a 'bell ringing' for each year that passes for us stage IV girls........a year passed is a year longer we are here!

Kiwi, are you in Auckland?  Why I asked is there is a get together on the last weekend in November and I am coming across for it.  I would love to meet you if possible, even if you only come and have lunch on the Saturday, that would be fantastic!!  Let me know.

Love n hugs.   Chrissy

KiwiCatMom

Hi Chrissy,

I'm in Wellington (actually live an hour north).  Is it a BC get together?  I may be able to get up there for it; just have to sort the dates and finances.  Please send me more info.  And..you're more than welcome to stay with us if you're staying longer and able to come a bit south.  We have lots of room, not to mention neighbouring cows, lovely birdlife, and views of the ocean.

Hugs to all,

Terre

lassie11

And that conversation is one of the things I really like about this web forum.  Real people getting together in real life.  If I weren't half a world away, I'd invite myself to join you!

chrissyb

Lassie and you would be very welcome too!  The more the merrier........lol.

Terre, I have sent you a PM with the details.

MargoChanning

GardenG & Kiwi, I started to experience dizziness; short, isolated episodes that graduated within a few weeks to day long vertigo, about 8-9 months after starting AI/Letrozole.  At first I thought it might be inner ear or sinus related, as I had mostly associated things like osteoporosis to estrogen deprivation.  It wasn't until I googled AI's and saw that dizziness was a side effect that I reported it to my MO.  When I had a second, day long vertigo episode within 2 weeks of the first, I reported it to him, he sent me to an ENT who ruled out inner ear and sinus.  My MO then took me off Letrozole for a month to see if the symptoms cleared.  They did, along with other symptoms like joint/back/neck pain and fatigue.  He gave me a choice of going back on Letrozole or going on Tamoxifen, because otherwise my recurrence risk would rise again.  Since Tamoxifen has its own problems, I went back on Letrozole, but I started taking it at night, which greatly reduced the morning nausea and daytime dizzy episodes. I still occasionally get dizzy, and nauseous with strong smells like greasy foods or strong perfumes, but it's much better than it was when I was taking Letrozole in the mornings.

Eph3_12

I like "to count when the War began".  I use my Dx date as my anniversary date mostly, but I know the dates of the "individual battles" too!

Chrisrenee77

me too Eph3-12- right down to the time as well. 

 

Eph3_12

honeybair

Leg and foot cramps during my sleep are coming on several times during the night, and always during my dream stage sleep.  I take calcium, magnesium, vitamin d-3 and zinc.  Does anyone have any other remedies for this?  The sleep disturbances are slaying me.  Fortunately do not have many hot flashes.  I was somewhat better during the summer with my intake of a fresh peach each day along with fresh locally grown tomatoes.   I know I need this drug but losing so much sleep is really getting to me.

chrissyb

Honeybair, you may think this is an old wives tale but really it does work.  My parents used to swear by it and I have used it myself and it does work.  All it is, is put a bar of pure soap in the bottom of your bed near your feet.  When you make your bed, leave it there and also when you change your sheets, put it back there.

Hope it works for you!

Love n hugs.   Chrissy

lassie11

I have used the bar of soap remedy as well. It stays between the mattress and the mattress cover on my bed.  Seems to me that it is helping - and if it doesn't, it certainly is doing no harm.

chrissyb

Lassie my mom used to say it works better if there is only a sheet between you and it.........maybe try moving it to on top of the mattress protector but under your sheet.  It might be better.

honeybair

Thanks, ladies.  Let me see if I understand this.  Place a bar of soap under my fitted sheet near my feet but not so my feet can feel the soap. Or does it go under the mattress protector?  Anyone have any ideas about how this works?

chrissyb

Honeybair a bar of pure soap (something like Velvet Laundry soap) under your bottom sheet on top of your mattress protector down near where your feet are.  Your feet don't have to touch it just as long as your feet are near it.  I have no idea how it works but works it does........sounds weird I know.....lol.

Manu14

honeybair -  I take tamoxifen instead of femora; but I've had the same symptoms as you plus take the same supplements. Once I added the magnesium, everything improved for me. I do find that the cramps tend to start up again if I haven't been diligent about drinking lots and lots of water during the day. I'm not sure how being well-hydrated makes a difference, but it sure does for me.

Kicks

honeybair - have you had your potassium level checked?  Since 1/2 way through Taxol my K (potassium) levels have been very low so to keep the up I have to large doses of it daily.  Occasionally, even with the pills, it will get low sometimes and tells me at night with ankle cramps.  Taking an extra K then will resolve it.  It is not always Mg/Zn/K levels that cause issues but the ratio between that also matters.  Should check with Dr for blood work that includes Mg/Zn/K levels along with Vit. D and the different Vit B levels because too much of something can be as big/or bigger problem.

savgigi

Honeybair, are you taking a statin? I found that the combination of a statin and femara caused muscle cramps that were waking me at night. I realized I was taking them at the same time. Once I started taking femara in the morning and crestor at night, the muscle cramps went away.

honeybair

Again, ladies, thanks so much for your suggestions.  I did get off my stains and the cramps left for about two weeks, but have begun again.  I take my Femara at night but perhaps should change it to morning.  I even skipped my pill last night and still had those savage cramps.

Called my MO's office today and she told me to drink three oz. of Schweppes's tonic water each night at bedtime.  She did not suggest getting my potassium levels checked.  So i will try the soap under the sheet and the tonic water.  If those do not work, I will request blood tests.

MsPharoah

Hi Honeybair, my sister has horrible leg cramps at night and swears by tonic water!!  Good luck.

MsP

honeybair

Thanks,MsP.  

jacee

Joni....a big Congrats to you!! Yay!!!  I remember when we thought this day would never arrive! I have been off Letrozole for one month with no change in side effects yet. My Onc says it takes 3 months to notice. However j have taken a few short breaks from letrozole along the way, and seemed to feel better. Maybe it was psychological. Anyway, hoping for some relief soon.  My Onc says you use your surgery date to count "survival" years.   However, I've always used the day I was diagnosed.....for me, that was the day my life changed immensely! 

honeybair

On a positive note, the 3 oz of tonic water I drank last night at bedtime kept me cramp free for the first time in months.  Bought my soap for placing under my sheet tonight.  Thanks to all of you for your advice and encouragement.

Linda-Ranching-in-the-mTns

Howdy all -- Just checking in after a long hiatus from the boards -- I got married (!) June 14th of this year -- first time for us both -- and it was (and is so cool! I am happier than I have ever been in my life, and that has honestly been the case ever since my diagnosis and surgery -- who could have thought that possible?

Anyway -- the reason I am posting is that in the past I have always said "I don't have any 'real' SE's" -- (started Letrozole 20 months ago). Well, I am changing my tune after going off the drug for 6 weeks during the wedding and honeymoon (we got married out-of-state and honeymoon out-of-country, and I just didn't want to lug around all my supplements and pills through airports, etc).

About a week after going off everything (Letrozole, vit E, vit D3, calcium, magnesium, glucosamine, multi-vitamin, fish oil, etc etc etc) I noticed that my joints were less achy. Not that they had been a big problem, and I am 59, so hard to tell sometimes what is just age and what is SE -- but my ankles especially hurt less and seemed more flexible. Also, after a couple of weeks (off Letrozole) I noticed that my trigger finger was completely gone! (if you don't know "trigger finger" it occurs every time you begin to bend that finger (in my case a thumb) -- it sort of feels odd and then rushes to bend, sometimes even making a popping sound). My experience of Letrozole is that it seems to make all the tendons and other connective tissues either dried out or somehow "less elastic" -- which is probably also what makes the joints sore (imagine your bones being pulled too closely together as they try to slide along each other). Hard to get down to the floor, harder to get up. General stiffness, especially after sitting for a while...

Smaller changes while I was off Letrozole: more restful sleep (fewer hot-flashes and sleeping clear through the night without a bathroom break (which perhaps was simply caused by taking my meds at night with a full glass of water before getting into bed -- and less over-all stiffness and general slight feeling of "being old".

But, then -- (Good Girl that I am) -- I started taking the pills again as scheduled -- and all the SEs that I have listed above came back with a vengeance, worse than before -- until my supplements could catch up again to mitigate the SE's -- which I normally only experience as a mild discomfort -- they never are really debilitating. (Magnesium helps sleep through the night and lessens any cramping, calcium, fish oil, and glucosamine are good for the bones/joints, vit E, D3 and all the rest help perk me up and give my body the building blocks to keep running as well as it can).

The great thing in this "experiment" for me, though, is that I now have proof that I am not actually "getting old before my time" -- that these slight SE's will leave us when we stop taking the drug.

SO -- if you are unsure if your "SE's" are actually related to Femara/Letrozole -- or just a consequence of healing from pretty invasive surgery and getting older -- you can always find out by taking a break for a few short weeks.

But you might want to keep up the supplements, because they seem to take longer to rebuild again in the system to help counteract the SEs when you do go back on.

My best to you all!

Linda

MsPharoah

Congratulations, Linda on your happy marriage and happy life.  Hooray!!  Thanks for sharing your experience because now I have hope that I will be able to get things on the bottom shelf and be able to get back up without assistance in the future!

MsP