FEMARA
Comments
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I went for my regular 6 month check up yesterday and we have decided I will take a 2 week vaca from Femara. Over the last few months I have suffered extreme fatigue, by 10:30am I am utterly exhausted, my arms and head literally are falling. It's like a wave passes over me and my hands literally fall from the keyboard at work and my head just doesn't want to function anymore, that lasts for about 1 hour then I am ok again for a few hours. It's not so bad if I am real busy but if not then it's chaos. Luckily I have an understanding boss otherwise I don't know what I would do. The flashes and night sweats have also amped up significantly recently which was a surprise as they seemed to have got under control for a while. I am having problems with my left knee and upper thigh also so I am hoping the vacation will take care of all that stuff. I also found out that my recent bone density scan shows a drop in my lower back also, my hip remained at the same level as last year so at least no further decrease there. The nurse practitioner I saw yesterday will talk to the onc about these changes and get back to me about what they want to do once they have had their discussion. I think I am about done with the Femara now but then ..... well you know what it's like.
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Gaynor1 are you taking Femara in the AM or before bed? Because what you are describing is what I had when I took it in the morning; almost all of it went away when I started taking it bedtime!
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Before you all decide to stop taking drugs, go to cancermath.net and use the breast cancer tools to show you the difference in survival rates between drugs, ovarian ablation, etc. I chose to be put into chemical menopause after being on tamox for 5 months. I am taking femara and can handle it better than tamox. You are going to get hot flashes anyway, so deal with it---it's normal.An acupuncture appt. every 2 weeks will help hot flashes---I read it in an oncology journal, I've done it, and it helps.
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Well, where are you guys? I checked out my own stats on cancermath.net and i have the same results on just lupron OR lupron and femara, which is making my hips come apart! Do this for yourselves, please! Check it out before deciding either way. Know your risks and outcomes. xoxoxox
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Hi Crazykitties.
I checked it out and it didn't tell me any different than I already know. We all have our choices to make, I'm not sure that I want to live to a ripe old age but be bent double with osteoporosis in extreme pain. I haven't made any decisions yet, I will talk to my oncologist again and see what the options are. My Mom has "bone issues" without having taken Femara and has restrictions on the activities she can participate in, most of which she enjoyed previously and misses out on now. I enjoy being active and I do not want to face a world with all the restrictions osteoporosis can impose. You are right in suggesting we should all know our risks and possible outcomes, but like I said these are "possible outcomes", nothing in life is guaranteed - we, of all people, know that only too well. Thanks for suggesting the website though.
Gaynor
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As I've mentioned before, I had to reduce my dosage to 1/2 a pill due to severe joint pain. I've been on 1/2 a pill for a year now. Well, 6 months ago I decided to have my Vit D level checked and it was 31 (right on the low end of "normal" which they say is 30-100). Anyway, I started taking 5000 iu a day. 3 months later, my level was 42, and shortly after that, ALL my joint pain is gone. It is unbelieveable to me, and the only thing that is different is I started taking Vit D. Now, I have to decide if I want to start taking a whole pill again. I feel totally normal again and it's wonderful. Anxious to see where my Vit D level is next week when I do labwork again. Trying to get it up to 70-80.
Joni
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Joni: I found your comments about Vitamin D levels extremely interesting. My diagnosis is so similar to yours, and the Femara has been difficult. I am going to try 5000 iu daily of the "D" & see if it makes any difference in the way I feel. I do take the Femara at night which has helped some with fatigue and the joints, but to feel completely "normal" again would be wonderful!!
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Bev....I didn't want to come across like some sort of fanatic, or that I have some sort of new breakthrough...lol. It's just my experience. I know you aren't supposed to take 5000 units forever. Just till your level is where you want it. I don't really know what else to credit the improvement to, if not Vit. D. I really struggled with the idea of lowering my femara dose, and my onc didn't really like it, but he admitted quality of life was very important. I felt severely arthritic...couldn't bend,, squat,etc. I'd be real interested to hear if anyone else does this and gets improvement. Have you had your Vit D level tested? I wasn't getting it tested, then after reading so much about it on these boards, I just asked my onc if he could add it to my 3 month lab visits. I don't suppose he would have ever done it on his own. So when I saw my level was so low, he said, "It wouldn't hurt to take 500-1000iu daily", but I had read on these boards about women taking 5000 iu's to get their levels up, so decided to try it. It has been wonderful to move freely again!!
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Bev- Make sure its Vit D3.
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Hi Ladies,
I have been taking 5000 iu's of D3 daily for well over a year and my level has not gone over 60. My onc. always trys to scare me and tells me not to take so much Vit D, but I make her test me every time I see her and my levels are great. I am feeling really good on Femara.
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Hey, thanks for the insight on vitamin D! I have been slacking off. My left hip just did some crazy bad mojo 2 days ago, could barely walk, and this shocked me. I will take more D, thanks for the info. My post about cancermath.net was meant to be a loving, helping post. I hope I didn't insult anyone. I told my onc about it and he played dumb. I agree, that I would rather have some great years now, since none of us know the future. Cancermath.net helped me realize that I needed to go into menopause, that I would have a better result. That's all. Love to you all, and peace. xoxoxxo
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nanna, my mom takes cymbalta for neuropathy and other pains. She had taken neurontin and lyrica but they were terrible for her mentation. the cymbalta seems to be working great. she is 85 and back to herself again. started on a low dose and increased gradually.
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just remember you can go to femara.com and get it for $10.00!!!!
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emegram, i have had cortisone injections in hands for trigger fingers. they worked okay but nothing really worked until i had surgery. i did not have any trigger problems before femara (have been on it now going on 7 years). have had surgery on 8 of 10 fingers, one of which is my little finger on my left hand, which is triggering now, but not enough to do anything about. before surgery i was unable to do much of anything without pain. i am a nurse and my hands are definitely a necessity when it comes to drawing up meds. surgery is not bad. i convinced my ortho to do both hands at the same time because i was already off for some recon surgery and had time to recup without extra time off from work. it worked beautifully. good luck!
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youlooklikeyouneedabeergirl.........i totally agree with your onc.......i am 6 years NED, still on femara, had 14/32 nodes positive.........and truly believe that my faith and attitude play a large part in my survival.......still on femara due to the large number of node involvement........have suffered all the se's everyone here talks about but they go away sooner than later.....feet hurt in the am and walk like an "old woman" for just a few minutes, then up and running as usual....knee pain....on an on........but they do subside and "i survive"!!!!!! best of luck to everyone.
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jacee, it find it odd that your onc wasn't checking your vitamin d.....since studies came out several years ago regarding the link with breast cancer my onc immediately started including it in my labwork. just an interesting thing to note that docs are so different.
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so you just made me want to take my morning dose of Vitamin D. I am suppose to take it twice a day but I tend to forget the am dose. I am going to start taking it at night if I forget it. My Vitamin D level was 26 in Feb. I am currently taking 4800 IUD's. Maybe when I run out of the 2000IUD's I will buy the 5000IUD's. Thanks for the push!
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Caren- I, too thought it was odd.
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And I had to ask mine to run a Vit D level!
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Hi All, I went to cancermath.com - thanks Crazykitties, and I can't use it as I don't know what to select under chemotheraphy type - I had TCH (taxotere, carboplatin, herceptin) - it doesn't seem to be listed. Can anyone help
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A bone density scan is really important before you consider taking femara...
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I just wanted to mention that I was told to take the Vit D3 and fish oil together for best results.
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Jaycee: My onc has never mentioned checking my Vit D level. But I'm certainly going to ask her when I go for my next 3-month check.
Nursecal: Thanks for relating your experiences with trigger fingers. My first injection of cortisone has helped some, but not entirely. The clicking in thumb joint comes and goes. Orthopedic hand doc said he would try 3 injections before doing surgery. I asked him if he was familiar with Femara & joint problems, and he said he didn't know anything about this drug. Go figure!
Thanks for your comments, ladies.
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My family doctor was the one who mentioned increasing Vit D3 to 2000 iu per day, I have never had my D level checked either by doc or onc, not sure why as they have never mentioned it. I take 1000 in the am then 500 with supper and 500 before bed. I have tried taking Femara in the am and also in the pm but neither way has made a difference to me. I will wait and see if increasing the vit D3 makes a difference to my aches and pains, so far no change but it's only been a few weeks. Maybe when I get my recent blood test results back I will be able to figure out if the fatigue is due to Femara or something else, funnily enough the onc nurse said she had not heard of Femara causing fatigue, I felt like telling her she should check out this board as it could really educate her, but I didn't.
Wishing everyone a great weekend, Gaynor
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What's the point?
I went to cancermatch and it seems like AI's give you more benefits the longer the time past, but not so much during the first 5-6 years.
I'm starting to question myself again if it's worth it, if I'm going to feel like I'm 90 and not be able to enjoy my life the next few years, what's the point?
I'm very strong HER2 and I'm afraid because of that I won't be here to take advantage of the benefits from Femara.
It sounds so good when the Onc tells you it reduce your recurrence with 50 %, when in reality it's 10 % (for me)
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My Onc. said no to vitamin D testing as well as estrogen testing. So yesterday I saw my GP and asked him for the tests as well as the other blood work he does. He was fine with it. Will let you all know how my levels are. I've been on Femara 6 months so would espect my estrogen to be quite low.
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I just turned 50, have a 9 year old daughter, and I don't like feeling like a 90 year old right now. It sucks sometimes. I may get off femara---I was doing just fine on lupron shots alone, but my onc wants the safety net of an AI.
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I hear you all on feeling 90 yrs old. Blahhhhhh! I asked my onc if I reeeeally needed the femara since I'm only "weakly" estrogen positive, and she said, "Well, we just don't know which part of a tumor cell turns the growth back on." That was good enough for me--off to take my femara. . .
In all honesty, though, I do still question it since it is so hard to feel so yucky day after day. I keep hearing that the HER2 positivity trumps the estrogen positivity, but I keep truckin' along because I'm scared not to. Sometimes, when I feel like I've about had it, I take a half-pill for a week or so. Probably doesn't change much in that short time, but pyschologically it makes me feel better.
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Does anyone else take monthly treatments of Zometa? When I was diagnosed for the second time back in June of 2009 I started Femara and monthly injections of Zometa. In June of 2010 I was cut down to Zometa every three months. I have noticed more joint pain and most is in the hip area. When I had my three month checkup and treatment of Zometa I asked my oncologist if taking Zometa every month would help with the joint pain since the first year I did not have the pain but started getting it when I was cut down to once every 3 months. He said he would be willing to give me Zometa monthly for the next 3 months to see if it makes a difference. I do know that when I walk 3 or more miles a day and exercise it usually helps but not always. I am going to take the treatments for the next 3 months and see if it helps but just wondered if anyone else is taking it and if they have noticed any difference.
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Yes, I am sure you can go to a category that allows you to list your chemo. I am checking it out right now for you, and will be back.
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