FEMARA side effects - when do they kick in?
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Has anyone gotten headaches with femara? I started femara in November and just had a few minor aches and pains, nothing really disturbing. But now it seems like Im getting quite a few headaches. Im also wondering if the headaches are related to my bone medicine Actonal which I have been taking every Saturday since January....because every Monday I have a terrible migraine on one side of my head along with severe neck pain. I was thinking it was the Actonel because...why the headache every Monday? Could it be the femara along with the Actonel?
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Okay where are the tamox ladies. help I am 9 months out lumpectomy chemo(onco was 21) rads and have been on tamox for about 6 weeks, I kicked butt during my tx never missed a day of work no side effects except the metal mouth. is it really true about joint pain i swear i feel like it in my left knuckle and a ache in my rt hip. please say it isn't mets i am st 1 no nodes started wed and comes and goes. i have also been working on diet lost 23 lbs so far. any words of wisdom does it help to take it at night?? I am 39 er pr+ so i would like to get the benefit from this tamox but the worry is going to kill me suggestions words of wisdom!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! ps had a pet scan back at dx and showed no skeletal lesions.
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Did anyone lose their eyelashes and eyebrows? Also did anyone have swollen eye lids from using femara? I have been using Femara for only a month and notice that my eyelashes and eyebrows are almost completely gone! I was wondering if it could possiblily be the RAD treatments? I am doing RAD's right now as well as being on the Femara drug.
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Last night I had a first, an entire night without waking up from being too hot and from pain that wouldn't quit. No pain at all. I am rested and I feel good and looking forward to a good day.
Caya, on the weight problem. My suggestion is to get things in hand by keeping a food diary for three or four days and noting everything you eat. Calculate an entire calorie count. If you are eating over 1200-1500 calories a day and not getting exercise you cannot lose weight. To lose weight you need to add exercise, even if it is nothing more than a 30 minute walk every day. Whatever exercise you do make it something you enjoy for other reasons. Also reduce your calorie intake. Make up a daily meal plan based on a high protein diet. Eat fruits for snacks instead of crackers, bread or processed foods. Keep your carbs down to under 100 calories per meal, for ex, 1 small piece of wholewheat or pumperknickel toast, a half cup of rice, a very small potatoe (or half of a larger one), or substitute a starchy vegetable like squash. Eat 6-7 portions of fresh fruits and vegetables each day. The more color you eat, the higher the nutritional level. Sweet potatoes, for example, are better than potatoes (and much less glycemic). Dark green vegetables like spinach and broccoli are better for you than white asparagus.
And here's a trick that will make it all very easy...a serendipity for me. I started taking Wellbutrin last fall to combat the effects of chemo brain. I was tired all the time, unfocused, depressed. My house was a mess and I wasn't getting much done. The Wellbutrin had a dramatic effect: within weeks my house was clean, drawers began getting organized, and messes in closets and hidden places that had developed over a five year period beginning with cancer treatment began to disappear. Best of all, I had much increased energy and much reduced appetite. I am now too busy and happy and engrossed in what I am doing to take food breaks.
There is reasoning behind this, and you can probably find the research on this website; studies have been done to show that chemo brain is real and presents much like ADD. Women who were given ritalin (the medication for ADD) responded dramatically, within a few weeks. My doctor didn't know much about these studies and didn't want to prescribe Ritalin, but she did know about Wellbutrin, which has some ritalin-like components. It worked quite dramatically for me.
Good luck on your quest!
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Ladies - It looks like I'll be switching to Femera shortly. I came back as a poor metabolizer of Tamoxifen and so would like to join this thread. Although I intend to read thru the entire thread, I've got 2 threshold questions that I'd appreciate being answered directly, for those of you also getting ovarian suppression shots,
1) what's the lag time between getting your first ovarian suppression shot and starting an AI - can they be done together ? Wait a month ? Or...?
2) How did you decide between monthly shots and shotes every 3 months ?
Thanks.
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Chris
I had the DXA results no BMD lose this last 6 month folowing the Zometa, although I lost 30% in one year of femara alone. I take 1000 calcium and 1000 d3.
HH
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HH - Thanks. I get my scan on 4/6. Hoping for the best. I am taking calcium and vit. d and magneseum.0
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Chris,
Good luck with your scan... You are in my thoughts and prayers.
Harley
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Thanks Harley, I'll let you all know how I make out with it.
Chris
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HensonChi - Yes, I've been on Femara since June 2009 and I've had a never-ending stiff neck since then. I did chemo March - June and then radiation June - July. By the end of the radiation treatments my neck was so stiff I could hardly turn my head or drive. I had always attributed the pain to the position I was in for the radiation treatments (arms held up very still overhead for 10-15 min.) but after reading some of these posts, I'm wondering if it wasn't the femara! I've been going to physical therapy since November & am now taking a break. My therapist is very surprised that I haven't made much progress so far. She says my muscles are stiff - almost leatherlike. Yuk!
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I started taking femara at night it has helped me .I am not as stiff and achy as I was taking at morning.
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NonniO
So sorry you are having so much trouble! Hope you are feeling better soon!
Nanna
I'm glad that taking Femara at night has helped you.
Harley
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I stopped Femara a month ago, after 9 months, because i couldn't tolerate the pain. I have fibromyalgia, so some of the pain could have been from that getting worse.
Then I had a blood test, had asked for vitamin D to be included, and lo and behold the D level was only 18 out of a new standard of 50 - 80. I found a medical article that came out only a week ago which said the formula to increase D level is for every 1ng/mL you are low, you need to add 100 units of D to what you are already taking.
I was taking 1200 units D already. So for 18, I had to add 3000 units a day just to get to 48. That's enough for now since the weather has changed and I am getting out in the sun most days. I will have the D level checked again when I get another blood test in the late fall. I expect to have to go higher then since our bodies don't store D very long.
Increasing my D level dropped my muscle pain by about half overnight. Unfortunately it didn't help my bone and joint pain, but that is partly arthritis.
I took 3 pills of Aromasin and immediately had trigger fingers, which is the reason for the "vacation." That side effect is very slightly better after 3 weeks off. I will consult pain clinic about injections.
I am planning on restarting Femara after I've been off AIs a month.
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Alcie1
I've been on Femara since Jan 1st, and I seem to be doing ok with it. I have a few extra aches and pains, but nothing I can't handle.
Good Luck with Femara. I hope it works for you.Hugs
Harley
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Harley - Thanks. I started Femara in April last year, when there was sunshine, and I had little trouble with it for a long time. Then over the winter the pain got worse and worse until I couldn't stand it.
I thought the increasing pain might just be a cumulative thing or maybe a fibro flare, but now I am hoping it was just due to low vitamin D.
Having tried Arimidex and Aromasin with disastrous results, if retrying Femara becomes intolerable again I'll just give up on AI therapy. It makes no difference to the doctor or his nurses.
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Hey Girls, haven't posted for a couple of weeks. I had mentioned aways back that I felt so much better in the warmer months. I too after my last blood work showed low "D". My doctor prescriped a super "D" pill, I think it's called Strovite. It's huge like a vitamin pill (oh great more pills!), but I do feel better. We had some beautiful Spring weather here in NY over the weekend and I just sat outside with my face in the sun. It felt sooo good. This along with the PM Femara has made quite a difference. I too get occasional nasty headaches, but with all the different things we are taking you just never know what's causing what. I feel more achy when it's rainy and cold, etc. Thus I am VERY happy Spring is here. Will be even happier when the onc tells me my almost 6 years on Femara has ended! Hopefully this stuff doesn't cause permanent damage. On the weight front, have gained almost 30 lbs since chemo, rads and 8 plus years from Tamoxifen through to Femara. I never had any problems with weight and always ate healthy. Now it's a struggle which is very frustrating. At least with the pain at bay, I feel more like doing things and look forward to getting outside and walking, biking, etc. I have 2 tubby dogs that could use the exercise too!
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Alcie 1, and Holly Hates...
Glad you are feeling better Holly!
I also think that we will find it easier during the WARMER, Spring and Summer months! It's a theory of mine... I had some arthritis issues with my fingers several years ago, before my bc dx... It only happened in the Winter months, and I really think that the colder temps is what trigger these kind of problems.
Hugs
Harley
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Harley,
I'm the one who had some severe bone pain after 4 weeks on Femara. Strange, but I only had it one night. I'm fine now, but my onc did take notes on this. I'm still taking it before I sleep. I feel a little stiff and I'm trying to get more exercise in and some yoga for more flexibility. I get my pet scans every 3 months and will have this done again April 5th. I'm confident I will know soon if it's working or not.
Terri
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I have been taking it since 12/8 and it is ok, told the dr. today that I am tired, but mostly do not have alot of energy, have been lucky with the losing of thing.
Sandy
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Dr. said that the Femara is working better than chemo would have.
"Since the prior study, significant improvement in the size of the right chest wall metastasis and to the extent of hilar or mediastinal lymphadenopathy...(didn't know it was in the chest wall, they said "under the pectoral muscle, didn't say anything about the chest wall!!) Since tiny intrapulmonary lymph nodes are noted along the tissues of both lungs. The majority of these have been stable since the prior study, although there are a few which appear only slightly more prominent than on the prior study. The significance of these finding is not clear.. There are no definite parenchumal nodules of concern for parenchymal metastases. (Guess that is a good thing, it is not in the lungs, yet but there are nodules which he said aren't big enough to biopsy yet.)
Stable appearance of 3 nodules along the right minor fissure the largest of which measures 5mm in maximum diameter (not that big, but there). Also stable appearance to several nodules along the left major fissure. Slightly increased prominence to tiny nodules along left major fissure as well. There are 3 lymph nodes that have gone down with the Femara one by 50%, 67%, 62% and the subpectoral metastasis went down 60% in 3 months,
Thanks for reading!
Sandy
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ibcmets,
I'm glad you are doing better with Femara.
Sandy,
Glad that the Femara is working for you!!
Harley
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I started taking femara at night time about 1 month ago. I cannot believe the difference .I have very little joint pain now sleep has improved. I have been taking it for 16 months. what a difference it made by taking at night time
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Hi ladies! Am a Femara newbie (on Tamox for just under 2 yrs.). I have been taking Femara for about 12 days and am noticing a very itchy skin rash. It appeared on my left hand this morning and seems to be moving up my arm . Actually now it is on both arms. Just wondering if anyone has had this type of reaction. I am trying to figure out if it's the Femara or one of the other lovely drugs that I am taking. Yikes!!
Ellen
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fritzellen, I have no experience involving a rash w/Femara. I'd call the doc! Joni
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Been taking femara for almost three months. Knock on wood. No side effects to speak of. It helps that I already had foot pain, ankle pain, tingling hands, sore back - so if femara caused any of that, I wouldn't notice anyway! Actually feel better since taking it, but I attribute that to regular yoga practice.
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Hello all, Been taking Femara only 3 months with no noticeable SE. Could it be that because I am 72 and the change Is a fog in my misty mind, that so far things are going good? Or will it take longer to build up in my system. Don't even seem to have anymore fatigue than I did before. Is there anyone out there that is my age on Femara??
Wish I could give you all hugs and make things better.
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Kayok,
I just turned 72 earlier this month and am also on Femera,and have been on it since June last year.My biggest and most annoying problems are my hands and feet.They are ok for the most part when i'm moving around,but let me sit in my recliner for a power nap and they both hurt so much i can't sleep more than a couple minutes.My fingers,the palms of my hands,toes and feet in general hurt too much.My right arm gives me problems all day and night ,i personally think that is from the lymph node removal,and the damage that may have been done to the muscles and tendons.I go to a new dr for that next week.
Also noticed that my hair is falling out again as well,not as much or as fast as it did during chemo,but falling non the less.It didn't come back in as thick as it was b4 chemo in the first place,but having it falling out again is very depressing.
I'll accept your HUG and pass it on.Thanks
Kathi
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Kathi and Kayok, could I just say that I am honored to be reading your posts here. You gals have a bit of age on and that is what we all fantasize about!!! Kathi I have the same problem as you so I take a simple painkiller (paracetamol mostly) 15 minutes before my nana-nap and I nap without interruption. Thanks, you two, xxxxx
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61 and counting and I do think there is some research that shows the further you are away from menopause, the fewer the femara side effects. Makes sense, since you are already estrogen depleted, so the change is not as dramatic. Good luck to all.
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I was glad to find the info. on Femara. Started taking it a week ago and so far so good. My toes do seem to get numb. I am not sure if this is as a result of the chemo that I just finished up on Feb. 11th or Femara.
Barb
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I am HURTING from the Femara after almost one year of being on it. My hands hurt so bad. I can not open my hands in the morning. Throw in the hot flashes, weight gain, joint pain., not sleeping..and the trigger finger. It is not getting any better. I find it interesting that the trigger finger is more prominent in the MIDDLE finger...could it permanently be held in this position?? As if it was saying F^&% You Cancer....
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Hello everyone, I haven't posted for a good while. Dr; had prescribed advair for my breathing problems (se from the femara) and my system just could not tolerate it. Breathing got so bad that a walk from the living room to the bath room got me down! It even made my arms and legs hurt. Quit taking it and after a few weeks, am feeling better. Went for a check up last week and it was just wonderful. Everything was just perfect; so I know I am beating this cancer once again. The side effects of the femara are worth putting up with.
In regards to the arm hurting and you think is is from lymph node removal. It probably is because this happened to me. My dr prescribed a lymph press and it works wonders. It is a vinyl sleeve that fits all the way up to the top of your arm and when you turn it on, it massages your entire arm and works the fluids out.
I think my worst side effect now is the thinning of my hair. I am taking biotin and it helps BUT I am still thinning. Seems like the top is worse than anywhere else.
I feel so good now that if it wasn't for having 2 bulging discs in my back, I think I could do most anything!!
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Hi Ladies,
I have not posted here for a little while although I have kept a watchful eye as I learn so much from all of you. I had a short break from Femara as I was switched to Arimidex but that caused too many problems with constipation, the bane of my cancer treatment life LOL. That has been the biggest SE of all, other than the usual aches & pains and looking & feeling like your 90 instead of 45.
Can I ask if any of you have problems with skin issues on your feet, particularly the toes. At first I thought I had athlete's foot around 2 or 3 toes but I have tried all those treatments and they actually make it worse. I did read somewhere about HAND & FOOT syndrome which can happen during chemo, but my feet were fine during chemo and also when taking Arimidex but as soon as I restarted Femara it has flared up again. The skin gets like a bubbly rash, gets really dry within a few hours and then cracks open. I have followed the instructions for hand & foot syndrome by using a moisturizing lotion and that does seem to help. Just wondering if this yet another SE of the little yellow pill. I know Herceptin also can cause skin problems, I had my last one of those in October 2009, my nails are still splitting & cracking, and my hands feel like sandpaper most of the time - that's after using hand cream. Any ideas, anyone else had the same problem?
Well, that's all I have for today. I hope you all have a wonderful and relaxing Easter weekend.
Love & Best Wishes
Gaynor
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Definately have a thought here, and you may shoot me if you wish....BUT:
Since Femara is for us older ladies, and you younger ladies are being either surgically or chemically put in to menopause....I'm wondering....do you think that this has a lot to do with your pain? That you aren't in a natural menopause situation, but a forced one? Make sence? Stupid question perhaps, but I possed it to my pcp the other day as we were talking, and she said she has asked others the same thing, and really can't get a straight answer. I'm 58, have had a few problems, but NOTHING compared to some of you. I think I posted early in this thread, and you can find me there, but if not, pm and I'll go through it again. One thing that does help is moving. Even if it's simple stretches, try and move. Chondroitine also helps, but it takes awhile to get into your system.
Question for gauleyeagle: If you are ER NEGATIVE as it says in your signature, why did your doctor put you on Femara, as this drug is typically for ER POSITIVE ladies?
Wishing all of us the best,
Jennifer0 -
Jennifer, I do believe that was my mistake on the ER negative. Sorry for any confusion.
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Oh, ok. I had an onc. who told me I WAS ER- at the beginning, and put me on Femara anyway. When I left him and went to my current onc., she told me I was ER/PR positive. No one knew why the idiot said such a thing. Was just wondering if another dr. did the same as mine!
Not confused, just curious...that's all~!0 -
I was on Tamoxifen from last Dec. -- found out I was in menopause so started Femara about 3 weeks ago. The day I started Tamoxifen, I swear my knees started hurting. The day I stopped it, my knees stopped hurting as much, my hot flashes lessened. I fees SO MUCH better -- am I just in the honeymoon period w/Femara and the pains will come back, or am I really going to be more comfortable? I exercised on the Tamoxifen and through my radiation -- I was prepared to live w/the extra pain, but now am hoping I don't have to. I did also start Calcium and extra D-3 which may be helping. My bone density scan was normal so no osteoporosis yet. Karenanne
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I think the answer is that time will tell. I've been on Femara for about six months and have some joint pains mostly when I get up from sitting, and also on my hands. I can walk just fine. But I'm also on Herceptin so am not sure what is causing what. Nevertheless, it is manageable, particularly as I am counting on it as much better than a recurrance.
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It's been awhile since I've posted here. I have been on femara for one year. I'm 56 years old and had already been thru menopause. Initially, I had more pain in my feet when I would get up after sitting awhile. I was able to swim all spring and summer last year and it helped. In the fall, my knees and lower back began to hurt, mostly at night after sitting awhile. At one point, my left knee hurt so much, I had it x-rayed with no problems noted other than arthritis. Did not have it before I started this journey. I was able to get back in the pool tonight and begin swimming again. It feels very good, but when I get up, it hurts. I've just decided this is what I have to live with. Having a dexascan in June to see what my bone density looks like since Aug 08. Other than the occassional pain, I really feel like I've gotten my life back. I can live with it.
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I just went to the onc yesterday and asked if I could stay on Femara after 5 years...it has been almost 4...and he said yes...up to ten he has had some women going...and it will be generic next year!!!!!!
I asked him what the new price would look like and he said like generic Tomaxafin (sp) Yeah! One of the three is coming up this summer for generic. Not sure which one it is.
I have not read through all of these messages but would like to know how bad is bad for dry vagina and area. Mine is dryer than cardboard...all the time. At this point I am happy not to be married or in a relationship. If you know what I mean!
Hang in there
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Happy Spring to everyone!!
Has anyone experienced what appears to be skin crawling while on Femara? I've been taking this "acid" for 3 months and have experienced MORE aches/pains than ever before - AND I'm 61 y.o. The joint pain has subsided quite a bit, I'm walking like a 300 y.o. OLD lady, had trouble sleeping and if I walk in the evening after dinner, I usually am o.k. without taking additional drugs to help my sleep. The dry skin (everywhere) is a pain in the butt. Now I'm reading that ALL trials on this drug were only done for women taking it for TWO years and they don't really know what the horrible outcome will be for longer periods of time. I honestly don't like feeling like I need to be in a museum somewhere - I want to LIVE MY LIFE w/o all these side effects. I had b.c. surgery last August and 7 weeks of radiation - I caught the b.c. myself - used to wear a huge tight "H" cup bra and my breast surgeon recommended a reduction along with reconstruction. It's awesome being able to buy a pretty bra instead of a rawhide one ():-)
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Goldenmermaid,
You are sooo funny. I am sixty and like you, feel like I am 90. I started Femara last Oct. for a month to be switched to Aromisin because my insurance would not approve Fem. When I took to Aromisin, my bones started aching like a big dog. I went to my Onc in Jan. of this year and he got me back on Fem only to have the pains getting worse. Not only do my bones ache but I am so stiff, especially my neck. This is crazy. This is my 7th month and I have 4 1/2 years to feel like this....hm. I understand now why some women's post have indicated that they are done with feeling like we do and go off of it. I am going to see my Onc next Tues. to pitch a bitch and see what he has to say. I don't know if I want to take a chance of feeling better and worry about it popping up somewhere else or gut it up and feel like crap for the next 4 years. If I knew for SURE that the cancer would NEVER reoccure again, I would not be complaining but there is no guarantee even if you take this ER+ for five years that it won't show up somewhere again. What to Do? I wish I had an answer. Take Care. Love your post.
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I feel your pain ladies.....literally. I'm 59 and on Femara. I feel like an 80-year-old arthritic crone. I can't get rid of the pain, just take the edge off. I also feel as fatigued as I did while on chemo. Has anyone else had this side effect? Sping is coming and I want to work in my garden!
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I have posted this info before and it's not a sure thing for everyone lissak, but do you take your yellow pill in the morning or at night? I started out with it in the AM and I could have posted what you just wrote an hour ago. I switched to taking it at bedtime and what a difference. Good luck!
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I did switch to taking it at night, but have not noticed any change. Have you had any problems with fatigue?
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New side effect for me is feeling nauseous all the time, mostly in the morning and the only thing that is taking it away is mc donalds sweet tea!!! Go figure!!
Sandy
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I get the nausea too, but have Compazine to take if it gets too bad. Just wish something would work on the joint pain.
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Not since I switched to nighttime--it was horrible fatigue while I was taking it in the AM
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I also started taking at night. It has made a big difference in how i feel.
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I take my Femara at night -- always have-- but I wake up 5-10 times per night. So, no, I have not experienced the fatigue, or else I'd be sleeping better! I have arthritic changes in my left hip which causes my whole leg to ache and I think the Femara makes its worse -- so part of my sleeping problem is my discomfort w/that. Also, I have hot flashes too - when I went off Tamoxifen it all seemed better for a couple of weeks, but I'm pretty much the same now w/the Femara after a month on it. I do think my bone/joint pain ( my knees bother me too now -- didn't before taking this junk) is actually better on the Femara than it was on the Tamoxifen. I'm just resigned to dealing w/this for the next 4 1/2yrs. -- it still beats the heck out of cancer! Karenanne
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