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FEMARA

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Comments

  • Vicks1960
    Vicks1960 Member Posts: 393

    Tonlee

    I have lived with chronic back pain since the early 1980s.  I use Ibuprofen, and on really bad days I alternate ice packs and heating pad.  That seems to help relieve the worst of it.  My problem is the results of 4 back surgeries (last 2 were fusions), that also cause neuropathy in my feet, and sciatica discomfort.  Anyway, just want to let you know, each of us can identify with you one way or another.

    I hope you can find something that will give you some relief..

    Vickie

  • weety
    weety Member Posts: 378

    The whole femara pain thing is really weird.  I'll have super bad ankle joint pain for a few months and then suddenly it seems better just to have super bad shoulder joint pain.  That will stay for a few weeks to months, and then suddenly that's gone and I 'm on to another different joint again.  Weird.

  • TonLee
    TonLee Member Posts: 1,589

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

    Thanks everyone.

  • gardengumby
    gardengumby Member Posts: 4,860

    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
    omaz Member Posts: 4,218

    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
    gardengumby Member Posts: 4,860

    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
    omaz Member Posts: 4,218
    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
    gardengumby Member Posts: 4,860

    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
    omaz Member Posts: 4,218

    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
    TonLee Member Posts: 1,589

    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
    omaz Member Posts: 4,218
    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
    Mollydog Member Posts: 15

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

  • TonLee
    TonLee Member Posts: 1,589

    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
    cfdr Member Posts: 308

    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
    nanna Member Posts: 138

    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
    Mollydog Member Posts: 15

    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
    gardengumby Member Posts: 4,860

    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
    dkerler Member Posts: 41

    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
    ibcmets Member Posts: 312

    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
    omaz Member Posts: 4,218
    ibcmets - Hi, did they suggest removing your ovaries at any time?  
  • tenaj
    tenaj Member Posts: 365

    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
    omaz Member Posts: 4,218
    tenaj - Will you still get the lupron shots with tamoxifen?
  • tenaj
    tenaj Member Posts: 365

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

  • omaz
    omaz Member Posts: 4,218
    tenaj - That's interesting.  I'll have to ask about it.
  • tenaj
    tenaj Member Posts: 365

    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
    omaz Member Posts: 4,218
    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
    tenaj Member Posts: 365

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

  • omaz
    omaz Member Posts: 4,218
    tenaj - I was dx at 51 and still regular as well.  I started the hot flashes with chemopause.
  • ktmimi2
    ktmimi2 Member Posts: 23

    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
    dkerler Member Posts: 41

    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.