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FEMARA

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Comments

  • jacee
    jacee Member Posts: 219

    lulu= me neither. Same as above. I've never heard of an SSRI prior to you mentioning it.

  • lulubee
    lulubee Member Posts: 903

    Really?  Now that is interesting...  

    Then maybe they tried to get me on an SSRI not just because of Femara but because the oophorectomy and Femara were both hitting me at the same time... and within a week of getting the Stage IV shocker (I had been Stage 1 NED for three years).  

    All I know is both my oncologist and my oncological ob/gyn surgeon were after me to get on Effexor (which is an SSRI), and the sooner the better, because they knew I was about to get slammed by instapause.  My onc was not too happy that I was non-compliant about that -- she said "the year ahead is not going to be pretty, your body is going to be in shock and the adjustment is hard," and added half-jokingly that if I were on an anti-depressant it would make her job easier.  But she respected my decision.  

  • NewOlga
    NewOlga Member Posts: 5

    Dear ladies,

    I just joined this forum. Usually I browse medical websites, where I try to find the answers to my questions. here I want to let you know that there is an ongoing trial in Johns Hopkins for postmenopausal women who start Femara. They give  4 mg Zometa as IV injections every 6 months. I joined this trial this summer after my ovaries were removed (a side affect of being on Tomaxofen). I knew that Zometa showed a very impressive result for premenopausal women (together with ovarian suppression). I had RS 20 and micromets in the sentinel node, and no chemo - I wanted some additional treatment to Tamoxifen.

    The trial is designed to check if Zometa improves side effects from Femara. I don't know about other women from the trial, but I know that I started developing bone and joint pain at the very beginning, but the symptoms disappeared within a couple of weeks. I am very happy with my current treatment, and I am planning to get Zometa from my local oncologist (or family physician) after the trial ends. I know that it is good for my bones and will also improve my chances for disease free survival.

    I think that based on the latest news from the 34 conference in San-Antonio, every post-menopausal woman can ask for Zometa. I would recommend it, especially for women with low bone density, and also for women with mid-high risk for recurrence.

    Is there anyone else who is taking Zometa and Femara (or any IL)? What is your experience with the Femara side effects?

  • weety
    weety Member Posts: 378

    I'm not in the trial you mention, but am getting the same treatment--femara and zometa every 6 months for 2 years.  I still have the femara side effects--no sex drive, achy joints, ankles and bones in fingers feel crackly and crickety when I wake up in the morning almost like they are just going to break under the pressure of walking or moving them.  Definately feel the femara funk--sometimes feel so sleepy out of the blue that I can barely keep my eyes open, but then it disapppears as fast as it came on. 

    I'm going to have to look up the study you're talking about and read more into it.  Do you have a link?

  • gardengumby
    gardengumby Member Posts: 4,860

    I've only been on Femara/Letrozole for about 3 weeks, so don't have near the experience of the rest of you.  I love tea, and have noticed that if I increase my intake, some of the aches disappear.  I'm also taking curcumin (which I'm a little worried about to be honest, as I must be very careful about anything that thins my blood - I'm still on warfarin due to the clots caused by the tamoxifen).  I have my next blood check after Xmas, so I'll see if the curcumin is causing issues.

    I'm not having as much edema now as I had for the first week or so, which is good.  I haven't noticed the flattened effect you folks are talking about yet - we'll see what time brings.  :(

  • lulubee
    lulubee Member Posts: 903

    gardengumby -- don't look for the funk if it's not in your face!  Haha!

    Who knows?  Maybe the funk will pass you by.  Mine has lifted a whole lot this week, and I am gonna ride the wave as long as I possibly can! 

    NewOlga - welcome! 

  • artsee
    artsee Member Posts: 701

    Garden...I've maybe commented on this in the passed...can't remember s--t sometimes, but I was on Femara and changed to Letrozole about 6 month ago. the pill is 'pink', how apropriate right?

    Well, the darn thing is nearly killing me. I have never had this many s/e's before. How that can be when it does the same stuff f(makes us feel like 99) no matter what. But it does seem more harsh.Everyday there is a new pain popping up. "Have pain will travel" I call it now. 2013 can't come early enough for me.

    I've also tried curcumin, the Dr. thought it was the cause of my Acid reflux which I never experienced before. It is now gone so maybe it was to blame. It is an Indian spice.

    Take care.

  • NewOlga
    NewOlga Member Posts: 5

     Zoledronic Acid in Aromatase Inhibitor Induced Musculoskeletal Symptoms trial (on Femara plus Zometa) is here http://clinicaltrials.gov/ct2/show/NCT01194440?term=zoledronic+acid+breast+cancer&rank=44.

    I believe that we all have a genetic predisposition to tolerate well (or not) Femara and other ALs. My Aunt had the same side effects for Tamoxifen (ovarian systs) as I 've got despite the 20+ age difference. She also tolerates Arimidex well. I tolerate well Femara. It must be genetics.

    On the trial they make special blood tests for the markers - I hope they will find some markers in my blood that point to Femara tolerance. I wish to be useful to find a way to relieve the sides affects for all woman taking ALs.

    Does anyone have a relative who is taking Femara (or used to take) and having the same reaction to this medicine?

  • gardengumby
    gardengumby Member Posts: 4,860
    Hi Artsee.  I was never on femara, they started me right on the generic by Mylan (the pink one).  In a couple days I move to a different generic (I don't recall the maker, but it's a tan pill), we'll see if the SE's change....  BTW, when I first started on letrozole I had TERRIBLE indigestion.  It didn't matter what I ate - and that was before starting the curcumin.  The indigestion has faded now, so possibly the problem for you was the letrozole, not the curcumin. 
  • Kaara
    Kaara Member Posts: 2,101

    Hair loss doesn't bother me...didn't have much anyway...that's what they make these nice wigs for!  I do not; however, want SE's like weight gain or joint pain.  I cannot take feeling older and having no energy because I've always been so energetic and healthy.  QOL is tops on my priority list...ranked above longevity.

     I'm post menopausal so I guess Femara would be the drug of choice if I were to take any anti hormonals, which I haven't yet decided.  My girlfriend takes Femara (doesn't have bc) and is also on the estrogen patch...go figure?  Her doctor said it protected her from bc.  She doesn't seem to have any ill effects from it..she's quite an athlete, skiing, tennis, swimming, etc.

    lulubee:  Do Not...let a dr. give you anti depressants to take if you don't even "feel depressed"...  they are addicting and you can't just start and stop taking them.  A dr. tried to do this to me once, and I almost fell for it...that is until I went online and checked out the SE's.  I told him "no thank you"...boy was he pissed!

     There is nothing wrong with being flat....flat is good!  My DD tells me my personality is boring...in the meantime, she's bouncing off the walls and stressing out over everything.  I wouldn't trade places with her for anything.  I enjoy having a sense of calm and peace about me that I attain through meditation and eating well.  Diet has a tremendous effect on mood swings.  Cutting sugar and starches out of your diet will make a big difference in your well being, and it won't hurt you. 

  • gardengumby
    gardengumby Member Posts: 4,860

    "Cutting sugar and starches out of your diet will make a big difference in your well being, and it won't hurt you.

     It will also help ease some of the joint pain!! Smile

  • lindatwo
    lindatwo Member Posts: 55

    I have to ask...........I have been searching for an answer, but can't seem to find any other mentions of lack of libido or pain during intercourse while on an AI.  I have been on Femara for about 18 months, and this problem has gradually gotten worse until I am about at my wits end.  I can handle the joint pain, sore feet, etc., but this sex thing is the worst!  HELP!

  • chrissyb
    chrissyb Member Posts: 11,438

    Hi Lindatwo, I'm really sorry to have to tell you that yes, painful sex is caused by the Femara.  Actually it's caused by the lack of estrogen which is caused by the Femara but there are a few things you can do to help in that area.  There is a thread titled (I think) The end of painful sex or something like that...........I'll look for it on a moment but if I look now I'll loose what I have written....lol.  The lack of libido is caused by the same thing but as they always say, use it or loose it, if we can get past the pain the rest usally follows.

    Love n hugs.  Chrissy.

  • chrissyb
    chrissyb Member Posts: 11,438

    Found!!!   It's called ....The end to painful intercourse!!!!!!  Yippeeee!!!!............and it's in the Stage IV forum.  Sorry I can't do the link thing but it shouldn't be hard to find.  Hope this helps.

     Love n hugs.  Chrissy

  • artsee
    artsee Member Posts: 701

    The thread is called'the solution to painful intercourse!!!!Yipeee!'

    It's really a good thread and is very helpful. Our bodies have been turned into old lady bodies from all these drugs. If the Drs. wont help then we can help ourselves with discussions about this issue.

    They welcome anyone with problems over there, even if you are not stage IV.

  • lindatwo
    lindatwo Member Posts: 55

    Thank you,  I do realize it is the lack of Estrogen, but so far I haven't been able to find a solution.  I think I have tried everything EXCEPT hormones, and nothing has helped.  I cannot get past the pain and I do have a high pain tolerance, I am not a wimp. My GP gave me an RX for Premarin vaginal cream and I was going to try to use a half dose, but after one dose, I chickened out.  (My Onc of course was not pleased with the idea either!) Anyway, will run on over to that other thread and see what they have to say, Thanks again!

  • artsee
    artsee Member Posts: 701

    Can't blame you for not wanting to put any estrogen in your body. Anyway they swear by something called Scream Cream. It's supposed to make you feel like your old self and takes the pain away. I have not tried it.

  • Kaara
    Kaara Member Posts: 2,101

    Scream Cream and lidocane to deaden the pain a little until the cream takes over.  Sounds like a plan...now I just have to find some...or ask my doctor to give it to me.

  • Denise2730
    Denise2730 Member Posts: 320

    I wanted to start taking melatonin but since I take Lorazepam I couldn't. I've been on Lorazepam for more than 10 years. I wish I had never started taking it. At the time I didn't check drug side effects like I do now and it is great for anxiety but highly addictive.

    As far as Femara, I've been on it almost 3 weeks and I'm having joint pain where I never had any before: fingers, toes, calves and even my gums and I'm so tired all the time. I'm not taking it anymore.

  • dcrmmimi
    dcrmmimi Member Posts: 3

    Hello all,

    I'm writing to chie in on the conversation about  taking antidepressants, specifically SSRIs to help deal with SEs.  I highly recommend this strategy. 

    I have only occasionally posted as my biggest issue with FEMARA  when I started 1 1/2 years ago was nausea.  At that time, I couldn't get much info on that from this thread. 

    BUT after about five months, a psycho-pharmachologist put me on a combo of drugs that has kept me feeling much better ever since.  I take small doses of wellbutrin which is an old-fashioned antidepressant (150 mg am and pm), prozac  which is an SSRI (10 mg am), and a benzodiazepene (clonezepam 1 mg, pm).  It's like a cocktail.  I also take melatonin at night, although I notice one person has been told it shouldn't be used with lorazepam(?!).  You can get addicted to benzodiazepenes and some people have to up their doses over time to get the same benefit.  To avoid this problem, I am constantly lowering my dose.  I take .5 mg whenever I've had a good sleep the night before.  So far, this has worked.  I think I'll wean myself completely but I never do.  However, neither do I get so dependent I need larger doses.

    I do have enough joint problems that I am having a knee replacement (problems started before femara) but otherwise I am living an incredibly full, energetic life.  If I had not gone on this regimen, I would have quit the femara.  I could not imagine being nauseous for five years. I understand I am extremely lucky not to be having more troublesome SE.  But I do have many in some degree.  Perhaps the "cocktail" takes the edge off.  In my opinion, assuming femara will help me as my doctors insist, this cocktail enables me to stay on it and lead a good life.

    In my experience, these meds do not flatten me at all.  I was surprised to see that concern.  I am just as likely to bubble up as I used to be.  It feels to me like I am "myself."   I don't think you have to be "depressed" to benefit from these drugs.  The brain doesn't know why the neurotransmitters are interrupted.  It just reacts accordingly.  To PTSD or Femara or stress. 

    Hope you all have good holidays despite it all.  I'm working hard to make this time good by planning and filling my days.  (I have 3 grandchildren nearby so that helps a lot.) 

    Best wishes, Deirdre

  • slousha
    slousha Member Posts: 181

    Dear Femara ladies,

    Till March 2011 this topic has been the first site, I was looking for every day. I was lamenting about my SE's, trying to find comfort in experiences of other sisters, I got here consolidation and a lot of practical advices, researching how to cope with difficulties from this medicine. As my Onco proposed switching from Femara to Aromasin (exemestane)  I was asking myself what difference in SE's should be? I was browsing through www of all medical sites and looking the information about.

    Although -   Femara should be known as the most powerful aromatase inhibitor and it should decrease the amount of estradiol the most (studies in vitro and in mouse), but it is also good (probably the best one) in patients -   after 21 months of it I decided to let ease a little my knee and hip pains, to try leave off pain killers and to overstep Aromasin (exemestane).

    Wishing us  whichever medicine to be possible to keep back any recurrence!

    Take care!

    Blessed holiday seasons and the healthy year 2012!

    Usha

  • chrissyb
    chrissyb Member Posts: 11,438

    Good luck Usha,  I sure hope you get some relief by the change.

    Blessings to all for the Holidays and I wish for you all good health and happiness for 2012.

    Love n hugs.  Chrissy

  • Monty
    Monty Member Posts: 146

    I might not get back on here before Christmas so I wanted to take this opportunity to wish all my good friends on BCO a very MERRY CHRISTMAS AND A HAPPY, HEALTHY AND PROSPEROUS NEW YEAR, may 2012 be a good year for all!

    Gaynor

  • Jac53
    Jac53 Member Posts: 58

    Femara:  I started in February along with T/C chemo. finished the T/C chemo October 4th.  Can't say that I have had many Femara SEs.  My hair is a fuzz but growing, had hot flashes for a month or so and my pelvis hurts due to a fracture caused by a metastasis.

     As someone on here writes 'my favourite side-effect is being alive'.

     Jeannie 

  • chrissyb
    chrissyb Member Posts: 11,438

    Jeannie, it's good to hear that someone else is having little or no SE's from Femara, I was beginning to think I was the only one....lol.

    I agree, that would also be my favorite SE as well...............being alive!

    Love n hugs.  Chrissy

  • gardengumby
    gardengumby Member Posts: 4,860

    I started a different generic a few days ago and have. Noticed that side effects have changed. On mylan generic I had no hot flashes, some edema, constipation and muscle pain. With the Cara generic (it's tan) I am having lots of hot flashes, and fairly severe pain in my feet. The constipation and edema seem to be a thing of the past. So confusing!



    Anyway Merry Christmas to all you lovely ladies. As you say, being alive is the best side effect!

  • eph3_12
    eph3_12 Member Posts: 2,704

    Merry Christmas my Femara friends.  I am still on my self-imposed sabbatical of no Femara.  I plan to start back up on Jan 1.  I will definitely be able to tell about aches & pains, as they have appreciably lessened over the last 5 weeks or so.  Have a fab time everyone!! 

  • chrissyb
    chrissyb Member Posts: 11,438

    Thanks Eph! 

    Hoping all of you have a joyous Christmas celebrated with all your family and friends.  Also wishing for a better 2012 for all of us.  Stay safe!!!!

    Love n higs.  Chrissy

  • artsee
    artsee Member Posts: 701

    Eph..YOU GIVE ME HOPE!

    Merry Christmas and a happy and HEALTHY New Year ALL!

  • ginger48
    ginger48 Member Posts: 1,437

    I am new to this thread. Just had ooph 2 weeks ago and was put on Femara today. It is the generic little pink pill. I am just starting to learn about it.

    lindatwo- my gyn who did the ooph recommended a cream for vag dryness called Carlson Key E. I have not tried it yet. She said you can get it from amazon and that it is very effective and has no estrogen in it. Might be worth looking into it.