FEMARA
Comments
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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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When I think about how awful Femara made me feel in bed I shudder at the idea of taking it at night. I was waking every morning around 3 am with my legs and ankles aching horribly. There was really nothing I could do about it except just lie there. Even after three weeks I still ache in bed in the wee hours of the night.
I am into year 3 and my PCP, my oncologist, and my breast cancer surgeon all encouraged me to quit femara because of what it was doing to my body. It was scary to quit, but it was scary to continue.
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I'm now done with the chemo group and am joining you here. I've been on Femara for 6 months now and my pains don't seem to center in my joints but in my tendons, connective tissues, and muscles. I feel like I've been run over by a dump truck most of the time. I agree tht exercise might help....and I'm too tired and sore to consider it...it's a lousy cycle! I'm taking calcium, mag. and 5000 units of vit. D. daily. I'm increasingly visiting my chiro. for relief of chronic neck pain that's flared up from an old injury since beginning Femara. Does anyone know if these symptoms reverse after getting off the Femara for awhile? Thanks for hearing me grumble...guess I'm having a "sad patch" today!
Blessings to you all,
Shoshanna
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I just went back on the femara after about a two month break. I've been walking heaps and sleeping..ok...I guess I have just accepted that snuggling up and sleeping for 8 hours is a thing of the past. Sigh. Now it's snuggle up, get a massive wave of nausea and throw the covers off just as the heat hits. It's crap for sure. I feel better mentally now that I (big capital letter I!) decide when I take the breaks and for how long. Taking it at night is the thing that makes the biggest difference. And how about this: I don't take glucosamine anymore either. the pain has diminished markedly. Who knows? I think the main thing is to feel in control. Cancer took my trim body but it can't take my MIND! (She says with barred teeth..) Love y'all. xx
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Haven't been on bco much lately. Sorry to be behind in my posts.
Bopeep, sorry you were having so much trouble, but I'm glad that your drs. have agreed to let you stop taking Femara. Quality of life is VERY important.... sending HUGS your way!
Welcome, Shoshanna to the Femara club. I had a period of stiffness and joint aches and pains for awhile, but it seems to have gotten better. But, I do notice that when I do exert myself, like Monday I planted some flowers in my garden, oh boy, was I ever sore!! I am feeling better now though.
You are ahead of me on Femara though... I started Femara Jan 1st, so I've only been taking it for 3 months.
kerry
Glad to hear that you don't need the glucosamine any more... yippee! Sorry you are still having trouble sleeping. I find that the night flashes are the worst. I don't get them ALL the time, but when I do, it's the pits. I am thinking these night flashes will be worse during the summer months. Just guessing, since the winter hasn't been too bad. Although.... since starting Femara, I'm having more trouble with insomnia.... just can't sleep through the entire night, and some nights, it's murder, cause I lay awake, tossing and turning all night.
Good luck to all of us!!
Harley
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Just started on Femara last night ... not sure what to expect after reading most of these posts. Had lumpectomy with PBI. No chemo. Really glad I am at this point in the bc saga just 2 1/2 months after diagnosis. Good luck to us all!
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I also take my femara at night,and Gaynor,i also have the same problem with my toes as you.They blister all around the nail bed,then peel.putting peroxide on them,then a triple antibiotic.My toenail also hurt all the time,they feel like they are growing in instead of out.and a couple of my toenails have turned snow white.
I see the oncologist tomorrow,so will see what he has to say.Went to the orthopedic dr a week ago about my arm,he did an ultra sound and said i have a combination of things going on,bursitis,arthritis and spurs on the rotator cuff.He put some cortisone shots in it and it feels so much better now.
I still have trouble sleeping,and those damn hot flashes don't help any.The chemo threw me back into menopause,but i thought it would go away once chemo was done,NOT!!
Well i better go pick out what i'm going to wear tomorrow,and get my notes together.
Take care everyone.
Kathi
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Hello all,
I'm new to this site & am discovering that maybe all my aches and pains are not just arthritis after all! But how to tell? I know I have some arthritis..... not to mention cancer in most of my smaller bones... most vertebrae, hips, pelvis, neck, ribs, etc (But I'm not complaining, I feel very fortunate to have this type of stage IV cancer as I have no symptoms at all!) I have some aches but I had those before, & it's NOTHING compared to most gals.
I've been on Femara daily since my dx last July. Only other treatment is monthly infusion of Zometa. No chemo, rad or surgery.
My question is regarding taking the Femara at night..... I read about that last week & switched but I have not noticed any difference at all. How long does it take to make a difference? Am wondering especially about you other Beautiful Pacific Northwest gals.....Do you feel better taking it at night also? Don't you still have aches & pains just from it being cold & foggy & wet here most of the time? I LOVE my riverfront home but I am sure ready for some SUNSHINE... not just the cold crisp kind, the WARM kind!
Hugs & best wishes to you all, Toni
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I need to vent! I'm with everyone posting - Femara has made me an old woman! I feel so tired all day long - it's an effort to do anything. I hate feeling this way! Are we going against nature by stopping our bodies from producing Estrogen? I'm at the crossroads again. I was on Arimidex and gave up due to side effects - I only lasted 4 months on it. Now it's been 10 months on Femara and I'm ready to throw in the towel again. I've got 4 more years to be on this stuff - it's not the life I want to live! I retired to enjoy life and now I just feel like I want to spend my day in bed! I wish I could see actual data regarding the recurrence rates of women using AI's and women who did not. I hear it's a 30% reduction in recurrence, but I've never seen the data that proves that fact. I know I'm getting older and aches and pains come with that fact - but THIS is not normal! I want to feel like I'm ready for a day when I wake up - not waiting for the sun to set so I can crawl back to bed! Sorry- I just needed to vent a little!
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Wblibrary, know exactly how you feel, I decided to live my life now without the SE of Femara, and I feel so good now, have my energy back and can move without pain.
I did try Tamoxifen too, and within 2 weeks I was feeling so bad again, so I said no more hormone therapy for me. Am I worried the b/c may come back, yes a little, but am being monitored by my docs, and will cross that bridge if I ever come to it. I must be one of those who need some estrogen in my body for it to function properly.
I am not sure where the 30% reduction in recurrence you mentioned comes from either.
My report on treatment options from the onc. showed that with my history, the senario is as follows: Out of 100 women
66 women are alive and without cancer without any further therapy. 15 would die from other causes, and 19 would relapse. This is a 10 years survival rate.
It goes on to say that 10 women out of 100 would not have a recurrence if they had taken hormone therapy. How do they know that ????? Is that the same original 100 women(the 66,15,19) or is it based on 100 women who did not take hormones ? If they are not taking it how do they know 10 would have benefitted, I don't understand these statistics and reports, I asked the onc. who is not really happy with me, and he said it didn't matter as he KNEW femara was gonna improve my chances of recurrence and that should be enough for me.
Well I am no math whiz, but looking at the 66, 15 and 19 women the report used to show this, it adds up to 100 so that would be the same if I used PERCENTS, 66%+15%+19%=100%
That's pretty clear, I am hoping I am in the 66% group. But the rest is not so easy, I just know I feel good and on Femara or Tamox I did not.
Hugs and best wishes to all of you
dsgirl
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It has been since december and the aches and pains but the charly horses and the nausea is all the time...I am sure it was working so guess I don't want to come off of it but I am tired, it is like they wind out of my sails is what I tell people.....I didn't take tamox and got the recurrence so now am on Femara......
Sandy
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Rivergal, I sent you a private message the other day. Up at the top there's a tab that says private messages and if you have one there's a pink # that pops up, up there.
Joni
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Went to the oncologist yesterday and had a good report.Everything is still looking good,and he said the problem with my hands and feet hurting and swelling IS from the femera.The blisters on the toes around the nail beds he wasn't sure of,so he told me to check in with my pcp.
He wants to do a cat scan and bone density test in July,and he did prescribe Lyrica for the pain in hands and feet,he said it's neuropathy from the treatments,chemo and femera'Took the first one last night and the only thing i noticed was that it left my mouth totally dry,and it felt like i had a mouth full of cotton.But if it helps,i can deal with that.
Kathi
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