FEMARA
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Good Morning Girls! Man, it sounds like you gals are just having too much fun on this thread!
I started reading these posts yesterday, from the beginning, & now skipped to the last, & I'll TELL ya, I don't know if I want to play with you girls here! I went to my new Oncologist yesterday, told her I was taking Tamoxifen, for one month....have had no side effects..yet! She thought I should be on Femara, & gave me 3 months supply to start. I am 72, feeling great, & like I said, have had no side effects from Tamoxifen.....So I got home, samples in hand, & came to this thread about Femara, & I'm just thinkin'...."Would I be nuts to start something else when I'm doing alright on the Tamoxifen?" Right now, I just want to finish the 2 months of the T pill, call the Oncologist, & tell her I really want to stay on that, & not even try Femara...Were any of you on Tamoxifen first?
I shouldn't have to worry about "blood-clots" because I never had any trouble with them while I was on the pill, and them Premarin for over 30 years.... The Oncologist DID say, that if the side-effects were too great, I could go back on Tamoxifen...But I don't know if I even want to start..... Thanks for any advice....Jeannette
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Chevyboy-I've been on Femara since Nov 16. No major se other than an occasional hot flash and some mild joint pain. My biggest thing was fatigue; I initially started taking Femara in the AM, but switched it around to nighttime about 2 weeks ago. I'm not nearly as fatigued during the day as I was, but I don't know that it's helping me sleep any better. My onc says she has a 92 yr old who insisted on taking Femara and is doing great on it; I think it's just an individual thing. Why does your onc think you should switch? If she has compelling reasoning then that should be considered, but it the reasoning isn't something that makes you go HMMMMMMMMMMM, then I don't know if I'd switch. You'll figure it out for you though-that's the important thing.
Joni
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Chevyboy
I took Tamoxifen for 2 years, and my onc told me that he wanted me to switch to an AI... I suggested Femara, because from what I read, it was the one with the least se's of the three AIs...
I've been on it for just over a month, and nothing to report except a few extra aches and pains.... a little stiffness, and hot flashes at night. Now just so you know, I had these with Tamoxifen also... If you have only been on Tamoxifen for 2 months, that really isn't enough to have many se's... I took it for about 3 months without much in the way of se's, and my onc told me that if I wasn't getting any se's... especially hot flashes, then it wasn't working. I was taking Effexor and he told me to STOP the Effexor. Sure enough, the hot flashes started to get worse a couple of months later.
But... that is just my experience, and everyone is different. My onc switched me to an AI because of the studies which show that it may be beneficial for us to start on Tamoxifen for 2 years and then to switch to an AI...
And, FWIW, after 6 months on Tamoxifen, I had a VERY THICK uterine lining, and I had uterine polyps growing in there... so I had to have a D & C... NOT FUN...
Good luck to you whatever you decide to do...
Hugs
Harley
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Kelley: That's just it. She said that 5 years is the normal course, but I had a recurrence after a year and a half on the Tamoxifen, so now she isn't sure. That's why i'm at 5 1/2 years now. The study on it hasn't been published yet. I can't be the ONLY one out there that's had a relapse.
Chevyboy - Remember that Tamoxifen is really an outdated med. It's only an estrogen "blocker". The Femara (AI) is an inhibitor and prevents estrogen from being produced in the first place. It's really a more radical drug and one dr.'s feel is a better choice in the fight. So much so that I had to forced into menopause to be able to take it. I had a recurrence on Tamoxifen, so it obviously wasn't good enough for me. It's just after all this time the SE's are getting to me and I am looking for when I can stop.
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Hi holly hates femara....I have been on these drugs now for alittle over 2 years. I am now waiting on a biopsy report to come in to see if the cancer has returned in the same breast. I like you hate femara!!!!!!! I have gained so much weight and my joints are a mess. I have days I feel I cannot function but I keep taking the dreaded pill and going on. If the cancer has returned I will be quite upset after destroying my body for the last 2 years only to start right back at the beginning once more.....I wish you luck...I can look in the mirror and see myself aging since going on femara. OH well I guess it is a wait and see game for some. I do know though that some people can take this without or very little side effects........jude14 once again prayers and best of luck to you
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Been on Femera about 2 months and still no side effect cept for being tired (take it at night) but still tired all day AND the hot flashes which I have had for 13 years anyways...
Sandy
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Morning Girls! Thanks for all of the information, & telling me what YOU are going through! I think Joni... that the only reason the Oncologist thought I should "switch" is because the Femara is "new" and works a "little differently"! I guess she thought it would be better than Tamoxifen, because of that! But she also said "We can't ever say you will never get cancer again, no matter what you take..." and I know that.....But I am still thinking I am going to finish taking the new bottle of Tamoxifen I have, then call her back & tell her I just want to stay on that pill! I don't have any side effects yet...on it for just a month.....except my hand hurts when I move it, & my knees hurt sometimes in bed....But at 72, Hey, that's to be expected, right?
I was afraid to start the Tamoxifen also! But so far, so good! And Harley44...I was reading on the "Bottle 'O Tamoxifen" thread about that test...the cyp2d2 or whatever.....A new article out about it not being effective in determining how we metabolize that pill.....You know, there is so much controversy about ANY new pill out there...and yes, the drug companies DO try & push their latest to the Medical profession!
Okay sweet girls.....thank you again! xoxoxoxo Jeannette
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Hi Girls, Femara..Femara...Femara..to take it or not to take it. Side effects or no side effects. I started taking it Oct. 2009 for a month, no side effects. My insurance decided not to approve it for me so I started taking Arimidex. Side effects were: no appetite, nausea, tired, no energy, bone pain to be the band starting in my neck and going in to my legs. In Jan. I had a visit with my Onc and to spare you the details he got me back on the Femara and now all the above it worse than before. Do you think my body is wondering what the heck is going on or is this my life for the next 4 1/2 years? I could use your advice. I am 60, most people think I look 50 but I feel like I am 80. Where did my get-up-and-go go to? I want to walk in the 5k Revlon Walk for the Cure in Los Angeles in May. I don't know if I will have any energy to do that by then. I just got a puppy thinking that she will get me out walking again. I used to walk at least 3 miles a day at the beach but now I am lucky to get her around the block. Discouraged?? yeah. I do know how blessed I am to have my marginal health. It is better than my alternative. I don't mean to complain. I just wish I had my energy and no so much pain right now. Is anyone experiencing this? I could use you advice. Thanks!
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I have been on femara for14 months and have the joint pain and stiffness.Some days worse than others.I have gained about 20lbs since surgery and am trying to get it off and I am not doing to good. My question has anyone lost weight while on femara?
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Holly- I wish I could help but from what I have read, they don't even know what the proper time frame is to take this. A lot I have read is just 2 years because Dr.'s were doing 5 on Tamoxifen and then 2 years Femara. It's very scary to see what is going to happen in the years to come with our bodies because of this drug. I know it's supposed to be great with the bc and all but we also have to worry about the long lasting effects, not just the ones we're experiencing now.
jude14- good luck with your biopsy results-let us know. ((((((hugs))))))
ktmimi2-my get up and go, got up and went but not sure where.lol I do know that I have had to push myself to walk and will now need to start up aerobics again this week. It's hard because I'm exhausted and joints stiff, etc, but I do feel better after I'm done. I have told myself I am NOT going to gain weight on this stupid drug and will do what I need to do.
nanna- I have lost at least 15 lbs but it hasn't been easy. I have changed my diet to mostly whole foods and exercise, walking for the last 6 weeks because of surgery but anxious to start up aerobics again. The diet takes some getting used to and you need to be creative and read either cookbooks or go online for recipes. It's mostly lots of veggies, fruits and whole grain things and portion control. I'm doing my best to stay away from processed foods, making a lot from scratch now-no preservatives and I can pronounce what is in everything! It takes more time but I have to tell you, I feel better because I used to get acid reflux and now I do not! Plus, I do not get that bloated feeling either. Go to some of the diet threads here for some additional help.
I still don't like taking this little yellow pill, my feet have been killing me since I went back to work! I'm also noticing more and more stiffness in my hips, back and shoulders. Although my hands give me problems, they are not worse, and I'm hoping I don't get trigger finger! This is one roller coaster ride I definitely don't want to be on any more!
Take care ladies and try to have the best day you can.
Kelley
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I would love to know the answer to that also! I have also gained. Side effects not too bad. My onc says I will probably be on this pill for 10 years. Does the weight gain level off or do you jjust keep gaining.UGH!!
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Hi.. I just started Femara on Jan 1st, after 2 yrs on Tamoxifen. I seem to be doing ok, but recently have noticed more aches and pains, especially when I don't get out to exercise because the weather has been nasty... the nasty weather, I think has also caused some extra aches and pains.
Saltykm,
Why has your onc said you are to take Femara for 10 years?? I thought they were still saying 5 years... oh no.... I was hoping to be off these hormonal drugs after 5 years!
Harley
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10 yrs shew I dont want to do that. I also thought you took it 5 yrs. How long has femara been on market?
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She explained in like this, its like a bear hibernating, you take the pill for 5 years,everything is fine, then you stop and it wakes up! Kindof makes sense! Not real crazy about the idea either, but what do you do.
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Well I am taking at the beginning as my onco says it is the one with the least side effects if it works then good if the tumor is still growing or the lymphnodes haven't gotten better then we are changing it, problem is have to wait until March (3 months) to check and then every 4 - 6 months after that and my thing is what if it stops working the day after you scan, then I am going 4 - 6 months with nothing and it's growing, hate it.....it feels like I am waiting for the end....sorry to sound grim but that is the way I feel. Anyway, the side effects are still hot flashes, can't seem to get up in the morning, don't have body aches couldn't get off the floor before am 56...guess we will see...
Sandy
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I'm also almost 72(in march) and have been on Femara for 7 mos.I have all the aches and pains especially in my hands,feet and neck,and have a lot of pain and discomfort in my Right arm.cancer side.They have run dopplers looking for clots,have had mri's cat scans etc and everything looks good.Doc said he knows the hand and foot pain is caused by the meds,the arm however has him baffled.
He first put me on aromasin and by the 2nd month i had to go off,too many se's from that,so he said femera,as he doesn't usually put post menopausal women on tomoxafin,as it doesn't work as well for us as femera or aromasin.I'll be on femara for 5 years,and hopefully no longer.
Kathi
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saltykm
I will need to discuss this with my onc... he mentioned last year (in June) that I could take the AIs forever... I questioned him, and then he admitted that... they just don't know... so I guess I'll see what happens... I'm not even sure I can take Femara for 3 years, to complete my 5 yrs. on hormonal treatment... I took Tamoxifen for 2 yrs...
It is always something...
Harley
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I've been off for a week and the SEs haven't gotten any better yet but the onc said it would take about 3 weeks to get out of my system.
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Hey Jude (pardon the pun). I hope things work out for you. I've been out of the loop for a couple of days (having peeps over for Super Bowl, etc.). I try not to think too much about all of this, but it creeps into your life. Only we know how hard it is to live with. Other people think you look great, etc., but inside you're screaming. You wish the weight gain would stop, you wish the joint pain would stop, the hot flashes, etc. When I saw "saltykm's" post about taking it for 10 years, I almost fainted. The norm (according to the drs.) is 5 years Tamox, 5 years Femara, although you all notice that lately the dr.'s just aren't sure. Isn't exactly reassuring now is it. I was a workout freak myself for a long time, but stopped doing any high impact work as it made my joints hurt more. The one thing I do love and makes you feel great is "aquasize". We have it at our local high school through adult ed. There's no impact and you you get a great workout. The bigger plus is no hot flashes while you're in the water!! I used to feel like passing out when I worked out. It's a thought anyway... It's all so hard to say...what helps, what doesn't, etc. At least we can keep bouncing our ideas off each other and hope that one of us gets the right answer and can pass it on. There were plenty of things the doctor said I wouldn't be able to do anymore and I'm doing them. So much for what they say. You decide what you want to do. There are foods to stay away from that cause inflammation, etc. You just have to read up on them. Yes it's a bitch and we all feel like we've aged a lot in the process, but you don't stop trying and you prove them all wrong. God I sound like a motivational speaker. Anyway, kisses to you all and just think of this as your way to blow off steam with your "girlfriends". A martini or two doesn't hurt either!
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Hi again everyone!
I just took my FIRST Femara pill. Recap.......... was on Tamox with OS for 18 months. Tested as a poor tamox metabolizer in January...........so............switched to Femara. Going for an ooph consult on Wednesday.
Will see how it goes.
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Hi ladies!
I took a month off from reading and posting before I started Femara. I wanted to feel normal for a short then I would start it. Well I took my first pill at noon today. I was hit a short while ago with heavy nausea, but of course not sure if it a se or not. I think I will try tomorrow night to take the next one. I have always had trouble sleeping plus hot flashes since my surgery. I don't want my sleep to get any worse so after reading most of the posts it looks like most of you have less problems when you take it at night so I will give that a try.
I do know that if I have bad se I will stop taking it and take my chances, but that is just my decision not for anyone else to follow. I till will keep posting and time goes by and I will keep up with all the posts to see how I compare to everyone else.
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HollyHatesFemara,
I have read the 2 yrs. on Tamoxifen/3 to 5 yrs. on AIs were the norm... gee I don't know...
Lexislove,
Congratulations on your 1st Femara... keep us posted on how you're doing... I've had some night flashes, and some aches and pains, and they are worse when I don't exercise. If I try to get some exercise during the day, I feel better.
Sunnyfornow,
Welcome... congrats on your 1st Femara pill... sorry you felt nausea... hmmm... I don't take it with food, but maybe you could try a snack when you take it... maybe that would help.
Hugs to all
Harley
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You know, all your messages have been helping me so much. Seriously, I was thinking that my cancer had spread to my bones because I have so much pain. The pain is in my neck, hip, legs and now, arms. It feels like you have the flu all day and night. At night the pain travels around from body part to body part. It is so strange. Does anyone have some suggestions as to what I might take to help with the pain. Advil doesn't touch it. I have taken 1/2 of a Vicodin but that isn't working either.
I want to exercise but I have no energy or motivation and when I do walk then I hurt even more. I guess I need to gut it up and push through it. I would feel better if I knew that just maybe the pain would get better but for now I feel like all I do is complain and I am not a complainer.New-to-Femara friends, please keep me posted on any SE. Thanks again everyone for posting to this great site. It's all about the communication between us women. Please keep your advice coming. HAPPY VALENTINE'S DAY TO ALL
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Hi ktmimi2
Welcome to the Femara club! How long have you been taking Femara?
Hang in there! I just started Jan 1st, but seem to be doing alright. When I am sitting for a long time, my joints feel achey when I get up out of my chair. Yes, sometimes I feel like I'm 80 years old!! But, I keep reminding myself that taking the Femara will help prevent bc recurrence.
Hope everyone is having a great day!!
Hugs
Harley
ktmimi2, thanks for the warm Valentines wishes!!
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Hi Girls,
I have been on Femara for 2 weeks. I am stiff after sitting and have hot flashes (course they were worse on chemo.). I guess in time I will be able to tell if I have more SE.
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I too took Femara for a while. Too many aches and pains and I didn't like reading all of the s/e's and possible long term damge, ie: bone loss! Fortunately for me, my oncologist is very open minded to alternative therapies and said for me, the less medical intervention the better she thinks I will be!
I am surprised that more of you are not looking into alternative therapies given the "newness" of the drug. At what point do we decide quality of life is of importance.
I have met many long term survivors 10- 15 years and more who tell me they took "nothing' for various reasons!
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Hi everyone! I, too, have been on Femara since the 1st of this yr. I have experienced some hot flashes, but they are not too bad. Ask me again in the summer and I may have a different story (hopefully not). I have been diligent about exercise - Pilates and some yoga, also walking and/or aerobic activity. For me it really helps physically as well as emotionally and spiritually. I guess it's a matter of finding what works for each of us as an individual. Keep strong ladies. Chris
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I agree, I told my onco that I had pain in my arm where the tumor was and under my arm, and of course in my neck and was convinced that it wasn't working but now I wonder if it is the Femera..
Sandy
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Hello Ladies, I'm sitting here after reading all your posts, feeling I maybe CAN put up with the horrible Femara! Thank you for all your experiences and ideas on self -help.
. Have had 5 years of Tamoxafin and now into the 2nd year of a 5 -year course of Femara. I also take medications for high blood pressure and osteoporosis I hate taking pills!
Tamoxafin didn't worry me apart from the hot flushes, but Femara is not good. First numbness in my hands at night, which would wear off with movement. Now I have constant pain in both hands throughout the day. Sometimes it's like a red hot poker, especially in the joint at the base of my first finger. Fingers stick, like trigger-finger, but the mad thing is that it's different fingers all the time. I'm sure the Dr. Thinks I'm imagining things.
Lately I've been getting sharp cramps in the arch of one foot, and stiffness in my hips and back after sitting or driving. I'm 68, and walk like a crone sometimes.
I keep playing the piano, and hope I'm not doing too much damage, and have just started swimming in a heated pool.
But hey, girls, we're still here! Thanks again.
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quarter 405
Hi and welcome to the Femara club... I too get stiff and have some achiness after sitting for awhile... sometimes, it feels like I'm 80 years old!
Hi Chris... I also think that keeping active, exercise helps... I have less aches when I get my exercise... unfortunately it's COLD here, and it's been raining, and now it's very windy... so I will have to get on that elliptical machine... UGH... hate it! But, at least it's something...
Sandy
I've been having some pains in that underarm area, but I think I overdid it when I was cleaning a couple of weeks ago, because it seems better now...
MauraAnn,
I have heard that swimming in a heated pool is REALLY good exercise, and good for these joint pains that we can get from the AIs... It's good that you have a pool... I am taking more warm baths... I think I'll get some epsom salts, because I read that soaking in epsom salts helps with these kinds of aches, too... something about the magnesium. I read that it is absorbed into the skin. I'll try it... it can't hurt...
Good luck to all of us... Hope everyone has a great day!!
Harley
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