Some Femara Side Effects and Concerns

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dibel
dibel Member Posts: 161

Hi All,

I've been on Femara for about 5 months now.  I'm starting to see some physical changes that have me quite concerned.  I'd appreciate it if anyone has experienced the same as I have.

1.  Vertigo--sort of a momentary out of body experience.  Not exactly dizziness but an unsteadiness on my feet....happens when I turn my head quickly.

2.  Extreme fatigue--I could lay  down in a store and go to sleep instantly.  This is NOT me. 

3.  Peeling fingernails---cannot grow them for anyting.

4.  Very sparse eyelashes.

5.  Severe mental fogginess--I feel most of the time like I'm just not firing on all cylinders.  I feel like I'm looking at the world through a haze.

I've had blood work (extensive) a brain MRI (normal) and complete neurological exam.  Nothing is amiss but still I feel horrible. 

Any thoughts on this?

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Comments

  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited June 2009

    Hi Dibel,

    I've been on Femara for 15 months now. I must agree I have all of the above but the nail peeling. Plus my dang muscles, bones and joints ache all the time. The package insert mentions fatigue and dizziness. It doesn't mention the mental fogginess, but it's noticeable to me and worst than when on Arimidex. I figure the lack of eyelashes, eyebrows go along with the thinned, shed hair.

    What can I say: low, low estrogen from Femara (and who knows what other chemical alterations) has extreme effects. It will be a great day in ER+ breast cancer when they know how low to go and no need to go below. I'd love to have some estrogen back, as would we all.

    Tender

  • HensonChi
    HensonChi Member Posts: 357
    edited June 2009

    Ditto for me....I have been on for 4 months.  I am so happy that the severe back pain finally went away!

  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited June 2009

     Bot_Chi, I am happy for you also. I know you had a tough time with it, and of course it raises our anxietymeter, or at least it does for me. Glad your feeling better. Tender

  • tmaybee
    tmaybee Member Posts: 1
    edited June 2009

    Hi

    I have just begun taking femara on 6/1/09 and I am feeling very fatigued, is this normal?  My bones are starting to ache is this to be expected?  Does it last the entire time you are on Femara?  I appreciate any and all information

  • dibel
    dibel Member Posts: 161
    edited June 2009

    Guess we just all need to savor our afternoon or evening naps.  Nothing has ever drained me as much as this drug.  Sigh

  • Jenniferz
    Jenniferz Member Posts: 541
    edited June 2009

    I've been on Femara for 3 years.  I have experienced sparse hair, eyelashes, fatigue, achy joints, raised cholesterol levels, sugar levels are up but not in the concerned range.  Ok so the cholesterol is now controled, and with blood tests run every three months, the sugars are staying well within normal range.  The hair has stopped thinning, but I've noticed it's not getting any thicker. 

    As to fatigue and achiness.....yes, enjoying your naps is one way, but if you take it in the mornings, perhaps switching to nights will help. I take mine in the morning because when I took it at night, it took too long to get ankles and knees to move the way I wanted them too.  And, I do take a nap...maybe just a quick one, but that helps.  No more than 15 mins.

    Jennifer

    Edited to add:  The achiness may or may not last, but I did take Glucosamin/Chondrontin for about 6 months, and think that helped considerably.  I also ride a stationary bike, and do yoga three times a week if possible.

  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited June 2009

    tmaybee,

    I don't know if just several days of Femara would or would not cause symptoms as we are all different. My SE's (side effects) when I started an aromatase inhibitor took longer to come on. Some women say they get somewhat use to the side effects, and others don't.

    dibel,

    Drained is a good way of describing the fatigue. Doctors call such fatigue  "asthenia": it is commonly recognized as a side effect of the taxane chemotherapy, but I don't see it mentioned or recognized with Femara. For me the fatigue is like dragging two or so Mack trucks behind me all day. Some days worse than others, but very different from normal.

     

  • EWB
    EWB Member Posts: 2,927
    edited June 2009

    yup, it all sounds about right. Many women have few problem, other have lots and everything in between. I suspect a lot is some how related to extremely low estrogen levels. Things I have noticed that help:  being well rested, stretching/flexibility/yoga type exercise, being well hydrated limiting alcohol and caffiene, gentle walking (not necessarily power walking), reasonable balanced diet- lots of fruit and veggies, easy on the fast food, pre done foods. And be gentle and kind to your self ---- think of what you would advise a dear friend to do under the same circumstances. Be a good friend to yourself!! Be realistic and don't worry so much about keeping up, we all do way to much any way. I wonder some times if its nature;s way of saying SLOW DOWN to us.

    Breathe deep, be kind to your self, sweet dreams and gentle hugs to all.

  • mrscrj
    mrscrj Member Posts: 55
    edited June 2009

    When radiaiton tx was finished in Feb this year, the doc started Arimidex but changed it to Femara because the Arimidex made me itch all of the time. Everything was fine with the Femara while I was in cool weather but as soon as it started getting warm, the itching started back up, Benadryl helps but makes me drowsey. Today when I went in for a check up, the oncologist NP suggested non-drowsy OTC antihystimine and gave me a Rx for Atarax if I wanted to try that. Other than the itching and a little fatigue that could be from other things than the Femara, things are going pretty well.

  • kerry_lamb
    kerry_lamb Member Posts: 778
    edited June 2009

    Hi girls! have all of you done chemo? What about surgery? My onc is a German national and he told me that in Germany people who have chemo are given 12 months off work, paid for by the govt. I think the rate is really generous..not like some scungy disability pension. This must surely be related to future contribution/ability as far as the workforce goes. I think we underestimate just what a knock-down chemo is. I don't know about you girls, but I just pretty much stayed on the work/family-life treadmill. Throw in one or two (or more) general anaesthetics and really, is it any wonder we are exhausted? Good nutrition, rigorous exercise and REAL sleep (medically assisted if necessary) are mandatory now. My husband had a good chat with a chemo/femara guru and he said two important things. 1. Have a 3 week break from femara..the side-effects often greatly reduce after resumption and 2. Get sleeping tablets and take one on, say, Tuesday and Thursday, ensuring 2 really deep sleeps per week. This minimises the risk of addiction and ensures minimum rest. Good advice, I think. XX

  • dibel
    dibel Member Posts: 161
    edited June 2009

    Kerry Lamb,

    Are you saying that you took a 3 week break?  Sounds reasonable to me.  Will see Dr next week and discuss these issues.

  • kerry_lamb
    kerry_lamb Member Posts: 778
    edited June 2009

    Hey Dibel! No I didn't take the 'holiday'. i figured I'd save it for when I need it most. This guy is big time in cancer-world in the southern hemisphere and I'm lucky to be on the batphone to him Actually it was he that made me change my mind about femara and start taking it. "TELL HER SHE MUST TAKE IT. IT IS THE MOST IMPORTANT PART OF HER TREATMENT!!!!!!!" You get the picture. XX

  • slyguppy
    slyguppy Member Posts: 12
    edited June 2009

    I see so many of you who have been on Femara 2.5 years or 3.5 years...am I the ONLY one whose oncologist told her she can think about stopping after TWO years? I am 18 months in, and he said "we can talk about stopping" when I get to two years. He brought it up, I didn't. My understanding was that at two years the benefit/risk ratio shifts. Yet I can't find anything on the web about this, and everyone seems to be on a five-year protocol! I would love to get off the stuff; like most of you, I am not a big fan....

    for the record, stage 1, ER+, low nuclear grade, highly differentiated, clear margins, clear nodes, no chemo or radiation, and no tamoxifen, just Femara. 

    I really dislike the hair loss.

  • slyguppy
    slyguppy Member Posts: 12
    edited June 2009

    Again, I wonder; why three years? Can't you stop after three years? Excuse my ignorance.

  • slyguppy
    slyguppy Member Posts: 12
    edited June 2009

    Kerry: sigh, we "must" take the Letrozole. sigh. But it helps prevent only recurrence, it has NO effect on new tumor incidence. It's so difficult to calculate all the variables. My oncologist too said I could 'take a break." he said "Stop for a month, it won't hurt you!" so I think, well, if it doesn't hurt, then why must we take it every day? Or even every other day? If a month vacation isn't significant? That makes no sense to me. I feel afraid to stop taking it (I took a one-week break, I figured I wasn't afraid of breast cancer if I was going to kill myself anyway).

    I worry about the risks associated with the AIs...I sometimes feel my chance of cervical cancer or stroke is much higher than my chance of another bout with BC.

  • slyguppy
    slyguppy Member Posts: 12
    edited June 2009

    what I find so interesting about the Femara studies is that woman who took it had much lower rates of "cancer recurrence" but also lower rates of SURVIVAL....meaning....Femara kept cancer away but actually increased (at least statistically) the chances of death. So....if we broke it down to odds, we'd be choosing "Do I want to be cancer free for 5 years but then die, or do I want to stay alive but have cancer?" 

    Information can be an awful thing.

  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited June 2009

     Kerrylamb, how wonderful for you to have your doctor. I would agree with him that hormonal suppression is key to preventing recurrences in bc, albeit the hormonals exact such a toll for some of us as this thread shows. It would be great to have quality of life and quantify: many choose QOL over the latter given the SE's. But for now, I'm on board. I keep reminding myself that passage of time also allows for newer science and treatment to develop.

    Slyguppy- I love your name. I haven't read studies stopping AI's at 2 to 3 years. The BIG -I 98 clinical trial, just released, did review data of women moving from Letrozole to Tamoxifen after 2 to 3 years. You might check that study for details. You do have a favorable tumor signature. Dang, it'd be great to have a blood test which at 2 to 3 years would shed insight on active tumor status:either circulating bc cells which truly spoke to active cells, or better insight on stem cells. But were not there yet.

    I've got to check the MA-17 trial: I think Femara was shown to have a slightly higher all death incidence but I am quite sure it demonstrated a lower incidence of deaths from breast cancer. If true, some of that higher incidence might be modifiable (cholesterol, exercise, hypertension, heart failure, diabetes, etc.).

    Tender

  • EWB
    EWB Member Posts: 2,927
    edited June 2009

    How long one takes Femara depends on so many things, and there are a number of studies/reports coming out about this very topic. Also depends on stage. At stage 4 I will be taking it as long as it works which hopefully a long long time, as my first line treatment..

  • kerry_lamb
    kerry_lamb Member Posts: 778
    edited June 2009
    This might seem a really dumb question, but I'd rather ask it here.  I must have missed this info during the chaos of the diagnosis and year of treatment. (Fancy that!)    What are the 'other' side effects of femara, apart from the joint pain and red-hot-mama! flashes? Implications for...death? When I try to look it up, I find that 'body-builders' also use it (pfffftt!!). Why is that? Thanks girls. XX
  • Member_of_the_Club
    Member_of_the_Club Member Posts: 3,646
    edited June 2009

    I will be switching to an AI after my five years on tamoxifen and I am wondering if I will be able to get away with only 2 or 3 years.  I guess this hasn't been studied.

  • crazy4carrots
    crazy4carrots Member Posts: 5,324
    edited June 2009

    Kerry:  I think three possible results of taking an AI are elevated cholesterol, diabetes and osteoporosis -- all of which, if untreated, can be life-threatening.   Just three more reasons for improving one's diet and having a regular exercise routine -- we really have to work at it, can't leave it all to pills!

    Cheers, Linda

  • slyguppy
    slyguppy Member Posts: 12
    edited June 2009

    The Femara site says that all results are based on 24 months of therapy (and I guess there are no serious followups beyond five years after the treatment?). My onc said that even after therapy stops the preventive element continues.the gift that keeps on giving (or not giving). I'm not sure if the RISKS accelerate or continue after you stop therapy. wouldn't it be nice if Vitamin D had the same preventive abilities that Femara has ;-(. Apparently studies about longer-term use are going on. I'm been so surprised to see people who've been on Femara for 5+ years already. I learn something every day!

  • slyguppy
    slyguppy Member Posts: 12
    edited June 2009

    Kerry: All the side effects are listed with the circular, and on their page...I think nausea and dizziness and headache are on there...in addition to joint pains and flushes and insomnia and some other stuff. Like most drugs (even aspirin) it can have pretty much ANY side effect depending on who takes it! eeek!

  • slyguppy
    slyguppy Member Posts: 12
    edited June 2009

    I've been on Femara a year and a half. Initial side effects (dizziness, weight gain, very sore throat) seemed bad but have diminished. Current side effects are hair thinning/loss, morning cough, gastrointestinal problems (quite severe and annoying), maybe wrist/arm pain (can't be sure it's related), hoarseness (I'm a singer!) eeek). I have no insomnia. Other than the hair loss, which wigs me out (no wordplay intended) these side effects are nothing compared to stuff I already had before I got cancer. So I am not complaining about Femara for now but would like to stop in the next year or so. I don't like the bone loss and don't want my cholesterol/BP to go up.

  • Hornet2Mom
    Hornet2Mom Member Posts: 13
    edited June 2009

    I just started Femara this week - I was a poor metabolizer of Tamox - so had complete hysterectomy so I could be fully menopausal (yeah!) one month ago- I started the glucosamine at the same time - are there any other supplements that help? 

  • bcinfo
    bcinfo Member Posts: 8
    edited June 2009

     hi dibel - i'm no doctor, but your SE's sound a lot like hypothyroid issues.  did they check that?

    In general, the symptoms of hypothyroidism (underactive thyroid) are:
    Thin, brittle fingernails
    Loss or thinning of eyebrows
    Dry or thinning hair
    Thickening of the skin
    Joint or muscle pain
    Puffy face
    Cold intolerance
    Abdominal bloating
    Cold hands or feet
    Depression
    Weight gain

  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited June 2009

    I was looking at the Arimidex package insert in detail yesterday. I just wanted to post that for the first time I read that "asthenia" is a common side effect.

    asthenia: Greek a sthenos : without strength (from medical dictionary)

    as a noun-the loss of vitality or strength; a condition of debility; weakness

    I first tuned into this word when my oncologist offered I would probably encounter it while on Taxotere. However I did not (at least that I can recall Embarassed). However, I DID encounter asthenia to my surprise when I started Arimidex and it is as described above. It worsened with starting Femara. To me, it feels like each morning I awake pulling two Mack trucks behind me: it is a dragging effect, a reduction in energy such that all seems in a slower motion. It causes me to struggle to get from point a to point b and complete a fairly simple task without exhaustion. Now my white count is good, my TSH is good (I  am on Synthroid), my red count is normal. I don't have Lyme disease, EB viral disease etc, my mood is ok- I look forward to work and the day. I take my 3000 IU Vitamin D, my 1200 mg Calcium, some magnsium and I exercise.

    So I wanted to log back in on this thread,as I just didn't know that asthenia was now recognized by the powers that be as an AI Side Effect. And to congratulate them on asking the question about asthenia (granted in different wording). Why? Because I think it's important to let patients know it does occur: that they are not loosing their mind in wonder of what is happening to them. And also to let the health care team, the support team, the spouses and family have a needed reference point.

    I don't know how the AI's cause asthenia, but I sure as heck know it's there. 

    Best to you all,

    Tender

  • HensonChi
    HensonChi Member Posts: 357
    edited June 2009

    Since radiation in Feb. I was diagnosed with a thyroid condition.  Funny thing is that they tested it before rads and it was fine, now a few months later it is not.  I started the synthroid and feel much better!  I was thinking it was the Femara but my Onc says they thyroid can really mess you up!

  • rubytuesday
    rubytuesday Member Posts: 2,248
    edited June 2009

    OMG Tender, that is exactly the way I feel most of the time on Femara.  I've taken to using an energy drink to get thru the work day.  Best wishes

  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited June 2009

    Thanks Ruby! I drink some tea-often green- to perk me up too.

    T.

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