FEMARA
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Sue
Been on femara since june 08 my hair started thinnig 6 month later. I am on Regain now, and my hair line is back to normal.
HH
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I've been on Femara since last summer. The joint and muscle pain is starting to kick in. Has anyone else experienced your joints popping...I mean I feel like an ad for Rice Krispies some times? Also one knee has popped out of joint 4 times now. It happens when I flex my knee sitting on the side of the bed in prepareration for getting onto my left side. Dr says that neither are from the Femara, what say you?
Thanks,
Donna...c10hitch
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I am miserable on femara, have been taking it since May 2009 after 2.5 years on tamoxifen. My onc wants me to take it for 5 years. With the joint and muscle pain, brain fog, high cholesterol and hot flashes/night sweats I am seriously considering taking a break from it. Just want to remember how I used to feel before all of this pain. Plus the domino effect of more drugs to counter the side effects is getting costly. I take an anti-inflamatory, statin, sleeping pill, glucosimine and yes pain meds when I can't deal with it anymore. I am going to try it at night and see if that helps. I'm interested in seeing the info on cutting it but wonder how to do it since it is so small. I see my onc in April and may ask to go back on tamoxifen. It was rough but not this bad.
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I have noticed that my mood has changed and I am really bitchy now more than ever!!
Sandy
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Dear Bopeep: I had no family history, no DES, but got it anyway. The dr.'s tell me that they see more cases of women with no history than with. It's all a crap shoot. They did a study a couple of years back here on Long Island to find out the reason for the high instances of BC. They spent millions of $ and came up with NOTHING. The reason more people are diagnosed is because more women are checking themselves and coming forward. Years ago you just died from it because of the ignorance. We've come a long way, but until they come up with targeted therapies for each type of cancer, we all will continue to suffer the chemo, rads, meds, etc. as that is all they know. I even had the Herceptin treatments, but it reduced my heart function, so that didn't last. At 5 1/2 years on Femara, I just recently switched to nite time as so many here have suggested and it has helped. The drawback is that the hot flashes are worse than before. I've burned out a couple of fans in the last 8 years as I can't sleep w/o it. I am living for the day when the onc says I can stop taking this. Time will tell. In the meantime, I haven't given up eating healthy as it can only help. We just had a number of snow storms and I was out there last Friday shoveling for hours. I was sore, but nothing compared to what I would have been if I hadn't switched to nights with the dreaded pill. It felt like a real accomplishment. I kept taking the whirlpool baths the two days following and doing stretches and the soreness is livable. Maybe this is a sign of improvement. I can only hope. I was just as frustrated as you, but I fought against it and will continue to do so. You can too! - Holly.
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I also started taking femara at night and it has helped my joint pains a lot. I have been taking it for 15 months. Only wish I could lose some weight. I try and not doing good at all.
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I posted here on the f-word thread ages ago and I'm back to report on the roller-coaster. I decided (after 14 months) to have a break from femara whilst I was on summer holidays. I had a lot of physical projects on, and I couldn't use my hands properly, or stand on my feet after 4pm..too painful. I could not sleep (nuclear flashes and electric-eel legs). So I stopped for 6 weeks. I felt so normal I could not believe it. Then my cancer-hostage mentality took over and I went back on them. 5 pills later..FIVE!!! I was 100 years old again. I was flashing every 15 mins plus extras for things like traffic challenges, forgotten tasks blah blah blah. But the big surprise was my head and my mind. My head felt like it was full of lead, and my brain simply wouldn't work. I had some big grants to write applications for..previously I could do this in my sleep..and I couldn't even figure out a way of starting. I couldn't make any decisions. Killer fatigue. My busted feet and electric-eel legs were back and sleep was gone. I am a teacher. FIVE tablets. So I went off them again..one week and I am feeling great. I am going to take all y'all advice and try taking them at night. But I'm also going to go and discuss other AIs because I am right on the point of saying goodbye to this treatment forever. Yep...and then freak out forever about a recurrence.......sigh........love you ladies xxx
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Kerry, may SE have been no where near what you speak of, however, I do recommend the nighttime pill taking. Good luck.
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Ladies you have convinced me to take the pill at nighttime. I'm pushing off the time two hours a day so in a week it will be at bedtime. I'll let you know if I feel a difference. I sure could use one.
Debbie
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I've been off the femara a month today. Yesterday morning my feet didn't hurt. I can actually walk now. I'm not 100% back to "normal", but I may never be after the AC and T. I think the T did a number on me, too. I still have the trigger finger. I don't know if that will ever go away. But, my hands don't hurt constantly like they did. I joined Weight Watchers 2 weeks ago, but I've only lost 1.6 lbs. I am 5'1" and I currently weigh 201 lbs. When I was diagnosed 8/08, I weighed 182. I'm having a hard time with the weight loss thing....mentally. I feel like I'm depriving myself and I wonder, for what?
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Hi Ladies, switched to taking at night and nothing changed! I'm actually getting worse, now hips and knees are aching. Still can't sleep, hot flashes terrible, getting bitchier, etc. I even started glucosamine a few weeks back and nothing yet. I hate this damn little yellow pill!
As far as the weight, I've been doing OK but really have to watch what I eat and continue to exercise. I still have at least 20 more lbs. to lose. I'd love to know wht onc would say to someone really overweight! Still not sure if I will stick with her.
Having some bad days lately, sorry to complain!
Take care.
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I've been on Femara for six weeks (I'm Stage IV, mets to liver and bone) because I'm trying not to have to do chemo for the 5th time in 7 years. Up until a few days ago, I was doing fine. Then, all of a sudden, what a train crash! It started with weight gain, then insane hot flashes, no sleep, despite Ambien CR and Clonazepam, swollen legs, pains in hands & feet, a UTI that refuses to go away and scariest of all (started late last night), real shortness of breath. This is a nightmare, I thought it would be a good alternative to chemo, but now I'm not so sure. Will it get better???
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lillian
So sorry you are having so much trouble!
KAC
You can complain to us... we understand!! Sending Big HUGS to you, my dear! Sorry you are having so much trouble.
Jane
Sorry you had so much trouble with Femara... I am glad that you are starting to feel better. Sending you lots of positive thoughts and encouragement... When you are able to walk, you may find the weight loss will follow... Hugs to you, my dear!
Eph_3_12
Hi there... good to see you again!!!
Debbie
Good luck with switching to night... I take Femara at night and it does seem to work ok for me.
Hope everyone is doing ok.
Hugs
Harley
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Holly, What's DES?
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Holly,
Thanx for the empathy. I am having an awfullly hard time with Femara and it bothers me because I think the pain are a sign that the drug is doing real damage to my bones. And my bone density has has diminished a lot since I start 3 years ago. The first two years weren't really bad. This past year is different. My oncologist actually suggested that it might be time to stop; my PCP really wanted me to find something else I could take after looking at my bone density and calculating my risk of having a major fracture.
What I am doing now is skipping a pill every 2 or 3 days. I am thinking about stopping altogether. I had a small lump and all clean nodes and when they did the re-excision they found absolutely zero cancer. I think they got it.
You know, I wish I had the option now of getting both breasts removed, just for safety's sake and for not having to take Femara any more.
Bopeep
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Bopeep
Did your oncologist suggest skipping pills, I wonder if it can be effective that way,I was thinking of doing this myself instead of going on Tamoxifen as I'm loosing bone at a fast rate. Thanks
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I've been on Femara for 2 months now - some joint pain, fatigue, leg/feet swelling. Very very dry skin (like I am constantly using moisturizer) and "down there" dryness/itchiness. Some days worse than others.
I hope the warmer weather will improve the s/es.
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Weiga,
I really don't know what is effective and what isn't, and I don't think the doctors know either. They simply read the abstracts of the research studies which are so many women taking the medication on a standard dose. I don't know how they come up with the dose or even if they have done any research to figure out how different doses work. I just figure I'm giving my bones a little bit of a break now and then and resuming the medication and hoping it works again..
New research is being done all the time and it often contradicts previous research, for example, the news in 2007 that adriamycin was really effective for a fraction of women who have a very specific form of breast cancer. This was devastating news for lots of women because for decades women had been taking adriamycin-- a very dangerious drug that can damage the heart, among other things.
Another example on how poorly these "experts" perform...remember the big fuss last year about how drinking alcohol is supposed to really greatly increase the risk of recurrence? Well I went into the original research and read the paper and it looked to me like the researchers had made an arithmetic error in interpreting the data. From what I could see from the numbers they reported women who drank only increased their risk of recurrence by only 1.1 percent, not the 11% as reported... I emailed the article to my oncologist who BTW is a cancer research scientist herself, and after she read the article she agreed with me that the writers had misinterpreted their data.
Not every research article is accurate and some of these researchers make mistakes. Too often the professionals who make decision only read the abstracts and not the full article.
Anyway, my surgeon really thinks I am over the danger period, I'm starting my fourth year after the initial dx and he says the danger period is really the first 6-24 months. So I'm not going to worry about it too much! Live and let live. Enjoy life..that's probably one of the best things you can do and don't obsess too much about it.
Bopeep
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Bopeep-er, loved your last sentence
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i'm still here.. Femara's not too bad, but my fingernails are splitting.
they are sooooooooooooooooo short
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Yah Eph, we only get one life and we're all gonna go sooner or later, so why waste the good part of it worrying about the bad part!!!
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My shoulders used to be very straight horizontally and after three years on an AI, they slope more (unattractively). I haven't gained much weight--what I have has been abdominal only. Has anyone else experienced a change in shoulders like this? Is it AI's or just being post-menopausal now?
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Hi Gals,
I stopped taking the Femera 1 week ago today and I feel great. Way to Much bone pain for me have an appt with onco to discuss other options.
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quarter 405
Good luck with your onc appt... there are other options. You could always take Tamoxifen, too.
Harley0 -
Eph3_12 - To answer your question, DES was a synthetic estrogen that a lot of women took back in the late 50's and early sixties. It was only years later that "DES" babies were showing all kinds of probs because of it. The weather is very much improved here in NY and it feels great to get outside again. I even played around in my garden this weekend to prune back all the dead stuff and even washed my car. I felt great doing it. Winter is definitely an enemy when you're on this pill. I don't think that once you are on Femara, it even makes sense to go back to Tamoxifen as that is only a "blocker", not an inhibitor. Even though I may hate this drug, it's all I have right now and after 5 1/2 years on it, I have to see it through to its conclusion. At least now I can get out there and recreate, which makes me feel so much betta! Have a great day (even though it's Monday)!
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HollyHates...
I agree with you... I think that in the Winter months, our se's will be worse... I'm so glad that it is starting to warm up here!
Also, it makes sense to me also that the AIs are better at preventing bc recurrence. While I hate the long term effects: The osteoporosis and the elevated cholesterol really scare me!, at least I feel secure in the knowledge that this drug is not only blocking the estrogen, it is eliminating it altogether. But... do we end up as shriveled up old women, at the ripe old age of 47?Harley
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I was fine on Femara the first 2 weeks. Now, I'm getting bad SE's. I also switched to taking it at night because I felt fogged headed taking it in the morning and a little nauseous. Last night I had bad bone pain. My left upper arms hurts daily like I was lifting weights. I also had a lot of bone pain in my shins, arms & sides last night. Will discuss with my onc on the 18th. I was hoping they could lower the dosage.
Terri
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TerriWelcome...
Sorry you are having so much trouble with Femara. Please let me know what your onc says on the 18th... and if they offer you another option...
HUGS
Harley0 -
Eph, I am also thinking of stopping Femara. I have been in so much pain at night that I can't sleep and aspirin doesn't touch it. If I take a Darvocet I sleep but I wake up groggy all day and it's constipating. And then I have a weight gain and bloating and stomach problems and I have to take a laxative, which gets my body of a gear in another way. I hate taking so many drugs; when you take the pain killers and muscle relaxers they make you sleep, so when you stop, then you don't sleep. I am also really sick of the hot flashes. Yesterday I didn't get out at all even though it was beautiful outside and I wanted the exercise; my joints and back were too stiff even for a walk.Did yall see the research news on aspirin? Taking one aspirin several times a week can reduce your recurrence risk 40 - 70% I believe. Even Femara doesn't do as well. Other things that improve your survivability are staying slim and exercising, You know, I want to get the best out of the life I have and I would enjoy it a lot more if I felt healthy and physically toned up, not to mention how it would feel to look better.My new oncologist suggested I consider stopping Femara even though it's barely been three years. Femara is so new I am not sure there is much research on women taking it for over two years. I am also wondering about the negative effects on overall health and morbidity from taking Femara--it is such a severe drug I would not be surprised if it increased risk factors for other diseases. Did you know that many elderly women die from hip fractures?Question for all of you: How long are you supposed to be taking the AIs if you have not taken Tamo?Bopeep0
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Harley: I used to feel that way too, like I'm not old and I don't want to feel like it! The Vagifem helped a lot with that and I've been fine on it. I know that a lot of your Onc's out there don't want you to take it, but my gyno said the risk is so small and it "stays" where you put it, so it doesn't travel into the bloodstream. She even suggested not to tell the other dr. about it! Ahhh but the quality of life is so much better. Never resorted to pain killers. The only other thing I take when things are bothering me is Advil PM as it knocks me out and I at least get some sleep.
To all the rest of you: I know this is a relatively new drug, but I've had two occurrences before I started this drug and have been clean for six years since. I can't wait to be off it, but am cautious at the same time. It's a catch 22 i'm afraid. As soon as that new study is released on the Femara protocol, i'll be the first to report on it! After 5 1/2 years on the stuff, believe me I want to be able to stop using it!!
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