Some Femara Side Effects and Concerns
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?
Comments
-
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
-
Ditto for me....I have been on for 4 months. I am so happy that the severe back pain finally went away!
-
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
-
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
-
Guess we just all need to savor our afternoon or evening naps. Nothing has ever drained me as much as this drug. Sigh
-
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.
-
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.
-
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.
-
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.
-
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
-
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.
-
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
-
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.
-
Again, I wonder; why three years? Can't you stop after three years? Excuse my ignorance.
-
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.
-
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.
-
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
-
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..
-
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
-
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.
-
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
-
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!
-
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!
-
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.
-
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?
-
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 -
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
). 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
-
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!
-
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
-
Thanks Ruby! I drink some tea-often green- to perk me up too.
T.
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team