FEMARA

TonLee

I hope this goes away weety.  It's horrible....and came out of nowhere....

Thanks everyone.

gardengumby

tonlee - try the alternating heat and cold and (if you can take it) some kind of anti-inflammation pain killer - even aspirin.  I've had back pain for years - herniated disk - it sucks.  The femara has made it worse off and on, but like weety said, the pain from femara seems to move around.  Right now it's not my back. 

Omaz

Because my hot flashes were getting better the last week or so my onc checked my estrogen level at my checkup yesterday and it was back up in the 200's from 11.  I have to go back on tamoxifen now.

gardengumby

geez - I don't want to worry because I don't get a side effect...  the side effects are bad enough!!!

So they are taking you off femara/letrozole and putting you back onto tamoxifen?

Omaz

garden - Yep, off the letrozole and back on the tamoxifen.  I haven't had a period since my second round of chemo which has been about  21 months ago.  I was 51 and having regular periods when I started chemo, I am 53 now.  I am really hoping my periods don't come back.

gardengumby

Man, that SUCKS.  How did you do on tamoxifen, and why did they change you to letrozole?  (I hear you about periods - but I'm a fair amt older that you - I'm 62 - and that's not a worry)

Omaz

garden - They switched me to letrozole because the two estradiol measurements I had during the time on tamoxifen were 5 and 11 and they figured I was menopausal and could go to the letrozole safely.  I have been on it a couple months so far and just noticed the last couple weeks that my hot flashes were getting less noticable.  I mentioned at my checkup and that's when we decided to check the estrogen levels to be sure they were still low.    

TonLee

Wow Omaz.  You may be faced with the ovary decision soon.

I stopped getting hot flashes on Tamox, and then shortly after my monthly visitor made an appearance.

My back hurts again today.  I'm going to take 200mg of ibupro. in a few minutes and see it that helps.  And just to feed my paranoia....what does bone mets feel like?  Anyone heard?  I don't even want to find that thread....lest I take a mental journey to the dark side...lol

Omaz

I thought about you TonLee - !  Onc PA didn't say anything about that - she didn't seem to think my period was coming back but we'll see.  Are you all recovered from ooph?  Rest your back for a couple days by keeping your activities light, that might help.

Mollydog

Exactly, TonLee, what does bone mets feel like???  Thank you for expressing my fear, because my lower back has been hurting since Sunday.

TonLee

I'm going to stop Femara for about 5 days and see if the pain lessens.  If not, then I need to make an appt to have my back checked.  If so, I'm going to have to find an alternative.  Even with Ibupro.  I am hurtin.

Molly I don't know what it feels like, but if pain lasts more than a couple weeks, and doesn't seem to lessen over time, then it should be checked out. 

My back pain was really bad, went to medium and has stayed there for almost three weeks.  Ugh.

cfdr

Mollydog, I have not had bone mets, but I asked my MO the same question. She said it is "not subtle", that it feels like a broken bone, very different from just an ache or joint pain.

nanna

I have been having trouble with my balance. I have had mastectomy on one still have the other one .  I know girl was having problem and she had other one removed and now her balance is fine. My back bothers me on the side where i still have breast (I have a large breast).I have had checked it is a disk buldging. I have been thinking if insurance will pay having the other removed. When i had the first surgery they wouldnt pay have the other removed because i didnt have cancer in it. Going ask my onc about it see what she thinks. Has anyone else had this problem and what did you do?

Mollydog

TonLee, that's what I've heard too.  If pain worsens and/or persists, it should be checked out.

cfdr, thank you.  That description is very helpful.  

gardengumby

nanna - letrozole is known to cause some balance problems, so it may (probably) have nothing to do with your mastectomy, but rather just another SE.  The bulging disk can create pain (I have a bulging one in my neck and a herniated one in my lower back) - and there are all kinds of things that can occur due to pinched nerves in your back (caused by the disk issues).  Not saying you shouldn't do the BMX if that's what you want and your oncologist agrees, just that what you are experiencing may have other sources and may not be affected by that surgery. 

In regards to insurance paying, what type of reconstruction did you have - was not a modification of the non-cancer side offered?  Due to the women's health act of 1999, my understanding is that "balancing" should be covered by your insurance company, just as reconstruction should be.

dkerler

So now I have a new se that I'm not really sure is one. I have been waking up at night with a burning sensation in my tongue. Has anyone else had this?

ibcmets

I have bone mets from the start back in 6/09.  It's an aching in the bones. I've been on Zometa and it's better, but for a few days after I can feel my bones ache (almost like arthritis) At times my wrist joints and long bones ache and of course back pain as I have spinal bone mets.

Omaz,  I'm 54 now and had been on Lupron shots in order to take Femara.  I did not want to take tamoxafin.  I did them for 3 years, but they check to make sure my Estrogen levels stay down.  If not, they will put me back on Lupron shots till I actually go into menopause.  It's tough depleting all your estrogen as we feel like old ladies with all kinds of aches & pains.

Terri

Omaz

ibcmets - Hi, did they suggest removing your ovaries at any time?  

tenaj

Hi ladies, I've posted in this thread before & have been reading for some time. I saw my MO 6/1 & it was decided he is switching me to tamoxifen which I started 6/2. I also get lupron shots every 3 months. I am already having less joint pain it's been only 3 days of no femara. Just thought I would share my experience......he switched me because I wanted to use a vaginal estrogen cream because of the issues I'm having with the lady parts. He would only ok the cream if I switched to tamoxifen. Good luck ladies with your journey.

Omaz

tenaj - Will you still get the lupron shots with tamoxifen?

tenaj

That's what my MO said. I've had 4 shots so far.

Omaz

tenaj - That's interesting.  I'll have to ask about it.

tenaj

Let me know what you here. I figure they put me into instant menopause......now why stop it? What's your thought? My doc said something about a study, I'll have to do some research.

Omaz

tenaj - maybe the key factor is whether or not you are having a period??  I went into chemopause at chemo 2 and haven't had a period for 21 months and my estrogen has been at meno levels.  It just went up but still no period (and hopefully not).  Were you having periods before the lupron?

tenaj

Omaz, I was still pretty regular. I was starting with night sweats. I was dx at 51.

Omaz

tenaj - I was dx at 51 and still regular as well.  I started the hot flashes with chemopause.

ktmimi2

dkerler.... I was changed from Femara (regular) to Generic last June. About 4 months later I DID start to have a burning tongue and....a watery mouth. Went to my regular MD and she told that I was probably allergic to the fillers in the generic meds and to try to go off of them and see what happens. She said it is a gradual build up, that's why it took so long to kick in.  My buring tongue stopped !!!!!!

I went back on regular Femara and I just have my normal SE....extreme bone pain everywhere. I have been on Femara for over two and half years.

dkerler

Thanks ktmimi2 for the information. I've been on the generic for about 10 months. This med. just keeps on giving. I'll talk to my onc. at my next visit in July if I can wait until then.

TonLee

I'm going back on Tamoxifen, for a year.....then 3 on AI.

Onc told me yesterday that Femara not only causes bone pain, but causes muscle problems as well...like making us more prone to injury....which certainly explains all the muscle pain I've had the last two months!

mamamiaow

i hate to say this, but i'm so glad that others have some of the side effects that i have--i thought it was just me! i had arthritis before b/c dx, my rt knee has no cartilage, but i can't see having surgery as i can't tell if the joint pain is from femara (letrazole, mylan) or the arthritis! i crawl out of bed like a 90 yr old every day, when i was an active woman before dx, working on my feet all day as a pharmacy tech. after chemo, surgery and rads, i'm unable to process info as i did before, can hardly walk, i have had that AWFUL thigh pain several nights (no pattern to when it occurs), it's worse than a charley horse, or even a labor pain! i have lymphedema on the left (operated) side, and feel dizzy, and clumsy. i can't even remember what i read in a book the night before. my nails (which were always strong and long) are dry and peeling, have lengthwise grooves on them, don't notice much w/hair as it's very short. i'm tired all the time, and achey. i really don't want a "vacation" from the drug as my onc offered, i want it to be over with!! i still have 2 1/2 yrs left!! i take calcium, vitamin d, multi vite every day. i really hate to complain, as i know there are so many who would be happy to be in my shoes, but i'm just not used to being so inactive and slow!! thanks for letting me vent!