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FEMARA

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  • wblibrary
    wblibrary Member Posts: 66

    Dsgirl - I wish I had your strength to stop the Femara.  I am so upset with my quality of life at this point - but I have two beautiful new grandchildren to live for and want to be around to see them grow into adults.  I keep praying that the side effects will lessen one day.  Some days are worse than others and today was definitely not a good one.  I just pray they improve all the AI drugs to lessen the side effects.  I wish you well on your journey without them. 

  • gauleyeagle
    gauleyeagle Member Posts: 24

    I know what everyone means about the aches and pains.  For the first few months, mine weren't so bad--night sweats were the worst and they have gone away.  I have been taking this stuff (femara) for 9months and the worst thing now is pain in my back-it feels like a sciatic nerve and then the pain goes down my leg all the way to the bottom of my foot.  Has anyone had this?  May have to go to the dr. if no one else has had it.  Also it feels as if the muscles in both my arms ache.  Doesn't feel like the bone, tho.  It bothers me so much that I can hardly post anything on the net.  Let me know if anyone else has these problems; because I don't want to run to the dr. if this is just another ache from the femara.  Here's prayers and hugs to everyone.  WE WILL BEAT THE BIG "C"

  • raeinnz
    raeinnz Member Posts: 553

    Gauleyeagle

    I have been on Femara for just over a year now.  Was fine for about 3 months and then one morning I could hardly walk my feet were so painful. I read up on these boards about AI SEs and started taking glucosamine/condroiton tablets.  The pain is not gone but at least it is manageable now.  I haven't had major pain anywhere else but all my joints ache and my muscles feel as though there is no strength in them so I know what you are saying about your arms.  I have even had to ask my hubby to not tighten jar lids as much as we used to as I can't open them!

    Am sure you will get some replies re your back soon.

    Rae

  • Caya
    Caya Member Posts: 46

    Just thought I would report in - a few weeks ago my PCP prescribed an anti-inflammatory drug for me - Meloxicam 7.5 mg.- 1 pill/day.  I have fibromyalgia, and since taking the Femara at the beginning of January, my pain has worsened, probably the combination of the fibro and Femara joint s/es.  I cannot begin to tell you what a difference this pill has made- the joint aches, pains, stiffness etc.have been alleviated by about 80% - I can hardly believe it.  There are risks of internal bleeding, so my dr. recommended I take the pill for 5 days, then off 2 days (and I can take extra strength Tylenol, or Tylenol for muscle pain those 2 days).  I can really tell the difference when I don't take the pill.  I don't know it this will work for anyone else, but I thought I would share this information. 

    Does anyone else have hand/foot swelling? Since starting the Femara my feet especially are very swollen - comes and goes.  And weight gain - OY!! very discouraging, but now that I can move without pain, I am going to try to exercise more.

  • raeinnz
    raeinnz Member Posts: 553

    Oy alright!!!  Despite eating less, walking hard an hour most days as well as playing competition tennis about 5 hours a week for the last 5 months I have still put on 7kgs in a year!!!!!!!!!!!  and most of it seems to be going on around my middle!!!!!   Have always had a nice small waist despite my 'twin' belly but am looking more and more like an apple nowdays Frown 

    Speaking of tennis, we are into our winter season now and I am off now for my weekly thrash about the courts - fantastic night for it - no wind, clear, fine and warm.

    Enjoy you day ladies!

    Rae 

  • Monty
    Monty Member Posts: 146

    Hi,

    Haven't posted in a while but I saw your post about sciatic nerve problem.  Actually I did experience this just before Christmas, I saw a chiropractor & after 3 visits the pain was somewhat relieved although it took weeks to "go away" although I feel twinges now and again.  However, I'm not sure it's linked to the Femara.  My husband has a herniated disc and sciatica right now and is on complete bed rest, can't walk because of it anyway, but the symptons you describe are similar to his.  The sciatic nerve runs right down from the spine to your feet so pain like you described sounds about right for this condition.  You should go see your doctor about it and get physio to treat it before it becomes a problem.

    Caya, you mentioned having fybromialgia - I think may be I have that?  I have always attributed all the aches and pains to the Femara but I'm not so sure.  I notice that when I am stressed the pain is so much worse and all over the body.  Actually I am going to see my doctor tomorrow to discuss this.  The onc had me checked out for mets with bone scans etc but now I'm thinking maybe if I could live life a little less stressed I wouldn't have the aches nearly as much.  I seem to have read somewhere that stress makes fybro much worse?  I did stop taking the Femara for a few days to see if things got better but I didn't see much of a change, that was during a very stressful period.  I have been taking a "natural" stress relieve med for the past few days and I have noticed a difference but I want to check this out with my GP as I know we have to be careful with any type of med we taek that it doen't contain estrogen, the packaging doesn't mention any but I know we have to be careful.  I also think a lot of our symptons can possibly be attributed to being thrown into the deep end of menopause, I know my body would love to have just a little estrogen to smooth things out.

    I'm not sure whether I prefer to live with a lower quality of life like this and stay on the Femara or take my chances and at least feel like a normal human being instead of this stressed out, achy old lady at the age of 45.

    I see the onc again next month so I'll discuss the options again.  I didn't hear back with any results fromthe bone scan or density scan last month so I will assume that everything was OK, I'm sure they would have gotten in touch by now if anything was wrong?

    Good luck to everyone, try stay positive and cheerful - I find on those types of days I do feel better.

    Gaynor

  • PugMum
    PugMum Member Posts: 18

    Caya<

    I do believe we could be twins. I've been on Femara for a little over a year. I started with mostly finger/thumb pain and tendinitis. The hand doctor wanted to inject me with cortisone but I wouldn't let him. Actually the pain in my thumb has subsided but I have a lovely trigger finger that is quite annoying. Today I woke up with numbness in my right hand. The pain in my feet is unbearable at times. Of course, like most of us, I'm trying to lose weight which is even more difficult when I can barely walk. I've recently tested for elevated liver enzymes and am currently awaiting my CT scan results. I know it may be related to the anti-inflammatories I've been taking for all my aches. At least that's what I'm hoping. I may ask my Oncologist about taking what you're taking. Especially if it works!  Thanks for the info.

    Kathy

  • Kate47
    Kate47 Member Posts: 1

    Has anyone who completed 5 years of treatment with an aromatase inhibitor had problems with memory loss?

  • mrsb
    mrsb Member Posts: 7

    I have  a little  but likely due to menapuse. I am still on Femara and 7 years NED

  • Harley44
    Harley44 Member Posts: 2,126

    Gaynor,

    I also feel better on days when I am feeling happy and cheerful...  There must be a connection.

    Caya,

    I found that I feel much better when I exercise...    I think there must be a connection.

    mrsb,

    YEAH!!   SEVEN YEARS NED!!    Congratulations!!!    I have only been on Femara since Jan 1st...

    But, I took Tamoxifen for 2 years, and as of March 15, I am THREE years NED!

    Hugs to all....

    HARLEY

  • eph3_12
    eph3_12 Member Posts: 2,704

    mrsb- have you taken Femara all those 7 years? What SE do you experience?

    Joni

  • Survivor07
    Survivor07 Member Posts: 7

    PugMum > Caya

    That would make me your triplet!!  My right trigger-thum is defnitely annoying.  I just use it as a trick to amuse the little ones.  And yes, sometimes I get up and can hardly walk my feet hurt so bad--I've found that the Tylenol Arthritis Pain Relief provides some relief. My lower-back seems to give me the most grief--especially if I've been sitting for a while at work. I've only been on this stuff for about 7 months and have to take it for 5 years....oh well...I guess it could be worse??

  • Caya
    Caya Member Posts: 46

    Gaynor, I was diagnosed with fibromyalgia about a year ago, when I was still on Tamoxifen.  Stress certainly worsens the symptoms, but I don't think it actually causes fibro.  I was examined by a rheumatologist, there are certain pressure points on your body that when touched (with a certain amount of pressure) will really hurt.  There are many other symptoms - one that surprised me is insomnia..  I had been a poor sleeper for years before my BC diagnosis.  Google fibromyalgia and you can find alot of information from a reliable website like webmd, or the Mayo Clinic.

    Not happy that many of us have had weight gain, but at least I know I'm not alone.  It is making me crazy, I know it's not that I am overeating... I'm sure the instant chemopause at age 48 (I'm now 51) and the Tamox and Femara are the culprits.  It's very depressing, I look at myself and can hardly believe it.  I'm up about 30 lbs. since I finished herceptin in May 2008. But like Survivor07 says - " I guess it could be worse."

    And I'm 3 1/2 years out - I'll be 4 years out in October. And I told my onc.( and I adore my onc.) it's his job to make me get old... 

  • raeinnz
    raeinnz Member Posts: 553

    Hi ladies

    sschmidt - I was on Femara for 9 months but in NZ we now have a generic letrozole called Letara which is produced by Douglas Pharmaceuticals in Fiji. Here we get most medicines free under a government funded scheme but the price on the dispensed receipt is $26.55 for 30 tablets.  The same cost for Femara was $146.55 for 30 tablets.  So there is quite a difference in price once the generic is available which would be welcome if you were paying for it yourself.  I was a bit iffy about the safety of the generic but my SEs are no better so I guess it is working just as well!

    Enjoy your weekend ladies

    Rae 

  • livingunderthebird
    livingunderthebird Member Posts: 3

    hey, i've been in menopause--complete--for six years.  before i started the Femara, i was exercising, doing weights, etc. all in preparation for this drug and its bone/joint/muscle effects.  I have HAD some arthritis in both hands and feet, and can honestly say it IS worse since starting this stuff at the beginning of the month. I also upped my Celexa dose, and am constantly on Ibup or Aspn.  And I'm active--cripping about, but active. I'll take Ambien to sleep til i die, I guess.      

          What i'd like to know is this--are the doctors really idiots, or do they purposely lie to us about the SEs?  How many women are actually ON this stuff?  How many stop saying anything to their oncs and hemos, and ask help of their family docs---does any of this info get recorded?   I see a ton of posts on muscle/joint stuff, (and no one--NO ONE--I know on AI's hasn't had that as a side effect,) yet it's listed as 'mild' or 'minimal' and  with some ridiculous % (30-40?)...so are we all the whiners on this site?  (obviously i don't think so, but someone is "layin' in th' weeds" on the SE data.)  i feel like i have to make a choice without actual information, and am listening to lay people because i feel the medical profession is using smoke and mirrors. 

    I intend to do this for two years.  we'll see after that.  i want some more 'real' data before i sign up for 5.

  • RoxanneC
    RoxanneC Member Posts: 37

    Hi ladies,

    I was just reading this thread, and noticed about the fibromyalgia. I'm not taking Femara, but have been on Arimidex for about 8 months now and was recently dx with fibromyalgia. My family dr. put me on Cymbalta for it, which I thought was odd, since Cymbalta is a med for depression. She said that they have found out that the Cymbalta greatly reduced the pain in people with fibromyalgia. She also said that Lyrica (the med for fibro) would make you gain alot of weight...fast, and that she didn't see that doing any good for pain with the added weight on your bones.  I have been taking the Cymbalta for a little over a week and I believe it is actually helping some with the pain! Just thought I'd pass on that info.

    God Bless you all!

    Roxanne

  • wblibrary
    wblibrary Member Posts: 66
    livingunderthebird  - I TOTALLY agree - I keep getting mumbled excuses for the SE of Femara from my doctors.  I want my quality of life back!  I came off of the Arimidex because I was so achy and depressed - that only took 4 months.  At least the Femara I've been on it for 10 months now and I'm at the same point.  I'm going to stop taking Femara for the month of May and see how I feel.  I know we are all in menopause if Femara has been described - it's just the deep end that's wearing me out. 
  • nanna
    nanna Member Posts: 138

    Has anyone else have dry mouth at night time.I have neen taking femara 16months.The dry mouth just started about 2 months ago. 

  • Paulien
    Paulien Member Posts: 5

    Hi Kathi

    I too have been on Femara for over a year and have the same symptoms including the blisters around the nail beds of my toes.  I have actually lost two toe nails.  The onc recommended vitamin D and I take it already.  Don't wish this on you but I am so happy I am not alone with the blister thing. Take Care

    Paulien

    Two days after posting this I lost another one.

  • Paulien
    Paulien Member Posts: 5

    Hi Roxanne

    I too am on Cymbalta for Fybromyalgia which came from my first bout of Cancer 18 years ago when I was 32.  It has also helped me quite a lot.  Not so much with the actual pain but more about how I handle it.  I am on Femara and had a second primary cancer July 08 chemo and radiation.

    All the best

    Paulien

  • Caya
    Caya Member Posts: 46

    I have to say my onc. did give me the straight up on the s/es of Femara - he told me that I would have major joint pain/aches, stiffness and that I would be very dry - everywhere.  Because I already had major aches and pains from the fibro, I was very reluctant to start the Femara, and I waited until the beginning of January 2010 to start it (onc. wanted me to start it in Sept.09).

     Roxanne, my GP and I talked about me taking Cymbalta, but I am on Effexor which has the "side effect" of stopping hot flashes - I started taking it when I was first diagnosed for anxiety and depression, but the benefit of basically totally alleviating the hot flashes was too good to be true.  So I did not change.  There have been studies that show Effexor may also help with fibro.

    Nanna, I don't have dry mouth, but I have noticed my eyes are very dry.  I can't wear my contact lenses for as long as I used to, and I have to use moisturizing eye drops daily now.

  • ibcmets
    ibcmets Member Posts: 312

    I believe I posted last week about having severe upper arm pain where I felt my arm was going to snap from taking Femara.  I have mild pain most days but have had 2 episodes of severe pain.  I just completed a bone scan that did not show any problems with my arm.  So I guess it's just a SE of Femara.  My onc told me to take an anti-inflammatory each morning.  I take Ibuprofen.  I'm glad my latest bone scans & Pet scans came out very positive.  I just have to get used to the SE of Femara.

    Terri

  • lovemyfamilysomuch
    lovemyfamilysomuch Member Posts: 762

    How dangerous is it for me to not take anything?  I had horrible side effects on Arimidex, took a two week holiday and felt better.  I now have the rx for femara and I have not yet taken it.  Can anyone help me figure this out?  Am I really doing myself a disservice if I don't take anything?  This is making me crazy.  Thanks sisters.

  • Mistie151
    Mistie151 Member Posts: 3

    I stopped taking Femara 2 weeks ago and still have alot of joint pain.  When I went to my Onc doc I told her that I could not take this without also taking Ibuprofen all day long.  I was on Tamoxifen to start out and only was on that for 2 months before I could hardly walk with terrible knee pain along with my feet.  I had a knee replacement done last June and even that knee was hurting where there was no pain before starting all these drugs.  I had a very small tumor with no node involvment so I didn't need chemo but did have 7 weeks of radiation.  My Onc doctor said she felt comfortable for me to go off Femara and that she will watch me closely over the next few years.  I feel better today than I did yesterday and can only hope the rest of the pains go away in the next few weeks. 

    I feel the pain everyone is going through and am sorry we all have to suffer like this after having surgery, chemo, and radiation.  We can only hope a cure is around the corner so others won't have to go through what everyone is experiencing.

    Best of luck to everyone.

    Fran

  • Chevyboy
    Chevyboy Member Posts: 10,258

    Hi lovemyfamily so much!  I just think you have to figure this out on your own!  If you tried one thing, & it hurt you too much, maybe try another......My Sister-in-law won't even go in for another Mammogram now...since her breast cancer....but she tries a lot of Holistic things!  I don't know if I would go that far though!  I've been taking Tamoxifen for 3 months now, & I don't have the side-effects that a lot of the other women have!    Another friend of mine quit taking the Arimidex also, because of her joint pain...she couldn't work, so she is off of it for awhile.  My Oncologist gave me 3 months supply of Femara, but I came home & read this thread, & decided against taking it.  I had started the Tamoxifen, and wasn't having bad side effects, so I just called the Onco back up & said I don't want to try it! 

    But to not take anything, is sort of a gamble honey, just try something else.  I know about the vitamins, etc, because I take them also, but I just feel like these extra choices we have on maybe helping us keep cancer away, are at least worth trying them.   Everyone is different...maybe something will work for you, but give someone else bad side-effects.  I'm probably much older than a lot of you...and maybe  this makes a difference on the lack of side-effects for me, but I would try anything, at least for awhile.  (((((hugs))))) Jeannette

  • blondiex46
    blondiex46 Member Posts: 2,726

    have been on femara since dec 8th 09 and the aches and pains are getting worse, the pain the in back bt the shoulders hurt all the time and am wondering if motrin would help.  Have to go to the oncologist on tuesday, should i tell him? 

    Thanks,

    Sandy 

  • Harley44
    Harley44 Member Posts: 2,126

    Sandy

    yes, I would tell your onc about any pains that you are having.  I have been taking Femara since Jan 1, and have started to notice that I am having more aches, and stiffness, when I've been sitting for too long, or when I am standing at work all day long...   I take Motrin and it seems to help.

    Harley

  • kathimdgd
    kathimdgd Member Posts: 84

    For those of you taking ibuprofen and it's cousins,be very careful.Before i ever had BC i had arthritis and especially in my knees,and bursitis in my shoulder.I took ibuprofen for years for it.Then i started waking up at night coughing up blood.Went to the dr and he said it was from the ibuprofen,as i had been taking it daily for several years and was up to 800 mgs of it.Dr took me off of it right away and told me never to take it again on a permanent basis.

    I had a total knee replacement in 2008,3 months before i was diagnosed with BC,hellof a year!!

    Anyway i now take Equate(walmarts brand of tylenol 4 arthritis) when i need it and it works great for me as it's 650 mg vs 500 of tylenol.I also don't need or use it everyday,just once in awhile.

    I had also been through and finished menopause before i ever got BC when i was 70,then chemo threw me back into it.OMG the hot flashes were unbearable.They have calmed down now but havn't totally gone away.

    Onc gave me Lyrica for the foot and hand pain,25 mgs to start,and the only thing i see that it does is make my mouth very dry at night when i'm sleeping,not much difference in the pain though.

    Sandy ,when i had pain in between my shoulder blades a few years ago,it was onwe of the signs of Gall bladder problems.Whoda thunk that?? Had that removed in 2000.

    Sandy like your have a bowl of ice cream,that's exactly what i do when feeling down.LOL

    Terri,i had terrible shoulder pain for a few months.It went from my shoulder up to my collar bone.I dealt with it as long as i could,then finally had it xrayed and they found that i had bursitis(again) arthritis,and spurs on the rotator cuff.I opted for getting a shot of cortisone in it on the 7th of this month and so far,so good.Thank GOD!!

    Pauline,i'm on an antibiotic now for the blisters around my toenails.None have fallen off yet,but the dr told me he could take them off if i wanted~~~~~~~~~Thanks,but no thanks!!

    Hang in there everyone,we'll get through all this together.

    kathi

  • wblibrary
    wblibrary Member Posts: 66

    I'm going to stop my Femara on May 1st for a month.  I haven't even told my oncologist my decision yet, but I will when I see him at the end of May.  I can't live feeling like I'm my mother's age anymore.  I need a break.  I will decide at the end of the month how I feel and my decision to return to it or not.  I've developed nerve problems in my thigh and have to now take another drug for that - where does it end?  I'm definitely a frustrated survivor right now.  My tumor is gone, my breast is gone, but I want my LIFE back!

  • lovemyfamilysomuch
    lovemyfamilysomuch Member Posts: 762

    wblibarym thanks for sharing.  I am praying about this.  I don't know what to do.  The thought of a recurrence scares me so much, but the aches and stiffness was really awful.xo

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