FEMARA

Tammy_M43

Blessings, you go girl.....

honeybair

According to my MO, chance of non-recurrence after surgery, chemo and letrozole is 80% which she said were wonderful odds.  So there must always be a risk of recurrence.  Her advice was exercise and a healthy diet to help your odds.

Blessings2011

dventi - after six months on Arimidex, I was feeling the side effects, but decided that I didn't want to be a wimp, so just kept going. At the one year mark, I was so miserable, I was nearly in tears telling my MO about it. She was upset that I let it go that far. She said that I wasn't being a wimp, that I had documented SEs from the drug, and that different women reacted differently to the same AI.

On Arimidex, I had near-crippling joint pain, to the point of needing a cane to walk some days. I had a trigger-finger and trigger-thumb on my right hand, and every morning my hands were like claws. My vaginal tissues had atrophied so bad, I had pain and bleeding. Then I started getting bladder pain and burning, and near-incontinence. I gained about 20 pounds in a short amount of time, and my blood pressure shot up to 175/95.  The worst, though, was the crippling depression... I just didn't want to get out of bed. Why should I, if I were going to feel miserable all day long?

The MO put me on a two-month drug vacation. I kept a detailed log of the SEs. At about six weeks off Arimidex, I started feeling better, but it took the whole two months for all my SEs to go away.

I was really reluctant to go back on another AI, but my MO said that women who reacted badly to Arimidex usually did better on Femara. When I picked it up at the pharmacy, the pharmacist pointed out that there were two pages of SEs for Arimidex, and only one page for Femara.

So far, it's been six months, and I have very few SEs on Femara. The MO did tell me to go ahead and use Premarin cream very sparingly on the external tissues only, and that has helped greatly. (I'm 100% ER+) No more pain, burning, or bleeding! No more bladder issues! Still need to lose some weight, but BP is normal again. And no more crippling depression! What a relief... Now... only 1,299 more days to go, not that I'm counting!

Thanks, Tammy!

honeybair - so true!!!

dventi

Blessings20...so glad to hear you are doing well on Femara.! Glad there are options for us !! 

pabbie

Hi: I had an appt. with my surgeon this week and she gave me some of my own personal BC recurrence numbers if I don't continue with the Femara. 

#1: They caught my cancer very early., stage 1. I had a simple mastectomy (right breast).

#2: So my surgeon said that the cancer is unlikely to recur in the same breast although NOT 0%. A risk of cancer in the opposite breast is 0.5% or less per year. We figured out the numbers and I have a 5% recurrence rate for 10 years., and 10% recurrence for 20 years.

I decided to take a break from the Femara for now until I see my MO in May. The Femara is really bringing me down mentally, emotionally, and physically. To me it is worse than the Tamoxifen because it effects my joints.  And I think I mentioned that I cut the Tamoxifen in half for most of my five years. Some women like me have a really bad time with no estrogen. In 2008 my MO and psychiatrist tried several mood stablizers and anti-depressants on me, so I've been on them all.

And most importantly, this is my third cancer I'm going through with my husband., 25 years together. I don't like being the crazy wife to him and myself. It wears me and him out. 

Take care. 

Anonymous

Hugs to everyone!

Brenda

moosegirl1

It has been 12 years for me and I still have the neuropathy in my feet. It feels like I have gravel/dirt in my shoe. on top of that my foot tingles all the time.  Yes, I was on Taxol and Adriamyacin.  6-cat and 37 radiation treatments.  I also deal with lymphadema and scar tissue which hurts.  Thank goodness I can sleep.  Will be on Femara indefinitely. 

gardengumby

I honestly cannot remember what my possibility of recurrence was without either tamoxifen or an AI - but it was (in my consideration) fairly high.  I do recall that WITH letrozole for 5 years it was reduced to 17%.  According to my MO she's seeing that a further reduction with 10 years is something like 5%, but she's waiting until I'm closer to completion (another 2.5 years) before we discuss the future.  I've told her that I'm willing to do the 5 years, but unwilling to do 5 years and 1 day.  We'll see if my opinion changes as I get close to the 5 year mark.

Blessings2011

"I've told her that I'm willing to do the 5 years, but unwilling to do 5 years and 1 day. We'll see if my opinion changes as I get close to the 5 year mark."

 I hear ya, gardengumby! I think I must have said almost the exact same thing to my MO!

Eph3_12

5 yrs=Nov 15, 2014!  Last pill. Onc knows it already.  Yippee.  Can't wait!

Blessings2011

Eph3_12 - Only 225 days to go!!! 

Eph3_12

Anonymous

Has anyone had a tight feeling in their chest when breathing deeply, hurting when coughing or sneezing?

Brenda

Tomboy

Not me, brenda, ouch! can you see your pcp, or call triage at your tx center, just to let them know if you should be concerned? Sorry i could not help you better, but hope you are fine, and good luck. Maybe you just need to rest...

chrissyb

Adnerb that sounds like an infection, you need to get it checked out.

Love n hugs.    Chrissy

peaches12

Hi, Ladies. Can I join the group?  I just finished radiation about a month ago and was active on that forum and so wish I had known about this community during chemo. Anyway, I am starting Femara/letrozole tomorrow and of course am scared of SEs. Especially since I already have BPPV vertigo.  I've been fighting that for over 30 years and have learned how to keep it under control pretty much, but hate taking a med which may bring it back.  I do keep Ativan and a prescription vomiting med with me at all times in case a sudden bad attack hits me.

I know I will have questions along the way, but my first is 'do you take it morning or night or does it make a difference?'  Thanks in advance for any and all advice.

BigDBeatingBigC

Hi peaches and welcome to this group!  I have only been on Letrozole coming up on two months now.  So far, no SE's for me.  I decided to take mine in the evening with my dinner as I had read here that it made some people sleepy.  That has not happened for me, but I have kept taking it at the same time of the day.  Some doctors like their patients to take it at the same time of the day.  I honestly do not know if it makes a difference or not.  There are many others in here who have taken it much longer than I and hopefully can answer that question for you.

Eph3_12

Peaches, I'm a bedtime pill girl.  When I 1st started back in Nov '09, I took it in the AM, with breakfast.  I was soooooooooo tired by 1 or 2 in the afternoon that I was falling asleep at my desk.  I started napping at lunchtime, but I was wiped out for the rest of the day.  After the 1st 6 weeks, I switched to bedtime.  Have not had that fatigue problem since (at least not from the pill)  

GrandmaV

I take it bedtime, too.

lassie11

I take it in the morning because by night time I'd never remember.

Blessings2011

Peaches - with regard to your BPPV, that's kind of a structural thing, and I'm sure you already know which positions to avoid (leaning your head way back, turning your head suddenly, turning over in bed too quickly, or any sudden movements, for that matter...) - so I really don't think the letrozole would make your BPPV any worse.

However,some ladies experience "dizziness" as a side effect - sort of a swimmy, unbalanced feeling, but as far as rotary vertigo, most SEs I've heard about have had more to do with dizziness.

And you already have the meds you'd need in case anything happens! 

I think the important thing is to go in with the expectation that you are going to be one of those women who will have few or no side effects.

That wasn't true for me with Arimidex (anastrozole) but it sure is true for me with Femara. And like many others, I take mine at night.

Wishing you the best!

Tomboy

Welcome, peaches! i take mine at bedtime, and last night i actually stayed up 2 hours past my normal bedtime after taking it earlier, at expected bedtime. i was feeling a little awful, and kind of nauseas and dizzy, so i dont think i will take it again, until my head is actually ready to hit the pillow! felt better after awhile, after lying down, but i dont think i will forget that again! i think it is very true what blessings says, and i take it each night with a "blessing" and 'great expectations", and so far, so great! i have been taking it for a month and a half, and it has been far kinder than either arimidex and tamoxifen was for me. so much easier to take, when you  don't experience anything to awful, as far as side effects.

Congratulations on getting so far!

micheleboots

Welcome Peaches.  I take mine at bedtime, simply as a way to always remember.  I had some vertigo, but it has stopped more or less.  Other than that I have no other SEs.  Don't worry just take it and see.  Remember that every drug comes with its own set of SE possibilities.  Have you ever seen the TV ads, they list everything under the sun....

Michele

AmyQ

I started taking mine at bedtime, but I found myself restless and wide-awake even with Benadryl so I take mine first thing in the morning, along with the rest of my meds.

MsPharoah

Amy, me too!  I think it is interesting how different we all are.  I was taking at bedtime and tossed and turned for hours.  Morning works best for me as well.    I still have a lot of stiffness when first starting out from sleeping or sitting, but I am getting used to it.  Getting in and out of the car is so very diffifult.  Been on Femara 7 months and am doing fine.  For those starting out,  I heartily recommend regular exercise...even if you only take a few laps around the block to start.

MsP

AmyQ

MsP - yes, you are so right...we are all so very different and what works for one, doesn't another.  Anyway, I am happy morning works for you too.

Amy

peaches12

Thank you all very much for the welcome and so many helpful replies!!  As wonderful and supporting as my family and friends have been throughout my ordeal over the past year there is no way anyone can really understand who hasn't gone through this unexpected journey we all are on.   That includes my great doctors who can talk about SE's but aren't living with them. 

My plan was to take my Letrozole at night.  I take my thyroid meds, Vit D, and a Lexapro anti-anxiety in the morning  and HBP med going to bed, so thought adding letrozole at night made sense.  I just added Lexapro to my little personal pharmacy 2 weeks ago at the suggestion of one of my sons who is a doctor and knows my tolerance for anxiety better than anyone and my MO agreed.  As my chemo and radiation ended (I have one more Herceptin next week!) I began getting somewhat anxious about the future which all said was common and normal at this stage after a year of continual treatment.  I think my husband who has been so wonderful throughout would have left me if they hadn't prescribed something for me to take the edge off until I adjusted to the fact that my life will be a "new normal", not the old normal. LOL.   Anyway, I had terrible trouble sleeping taking Lexapro at night, found the Lexapro forum here, and saw that is a common SE cured by taking it in the morning.  I'll start with Femara at night, but if it interferes with sleep I'll switch to morning. 

Blessings20- Yes, I have BPPV triggers under control after all these years and haven't had a big attack in at least 5 years, but it takes constant awareness of head and eye movements and you just never know when one quick move will start the room spinning.  I never look up, down, or sideways to the left moving my head abruptly and the dentist chair/ beauty salon shampoo chair (when I had hair!) are done very slowly. I have to lie only on my right side in bed (it's my left ear with the BPPV) and my subconscious must take over as I haven't rolled over in bed while asleep in over 20 years!  So when I read vertigo with Femara I panicked.  Thanks for putting me at ease about it.  I have been positive all along and will continue to be.  

Sorry this turned out so long, but now we are acquainted. Thanks to all.

cakes

Hi Peaches. I have been on letrozole for 6 months. My Onc told me to take it at bedtime, with a large glass of water, every other night for 2 weeks to allow my body to get accustomed to it then every night. That worked for me. I did notice I was achy so I started taking my omegas (fish oil,etc.) at night as well and for the most part have no side effects. 

Good luck,

Cakes

peaches12

cakes-  How long did you take it just every other night before you went to every night?

peaches12

just saw your edit.  Thanks