FEMARA
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My onc switched me to Aromasin, so we'll see how I do on that.
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Bo
5 years but studies under way may suggest more. I had bone pain, muscle pains, and stiffness for the first year then I took Zometa and Calcium and vitamin d3 I am a lot better now. Hang on there.
HH
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Holly
Well, I only started taking Femara jan 1st... and so far so good... but I worry about those other long term se's.
My onc seems to think that we can take AIs FOREVER... not sure I think it's safe to take them FOREVER....
Harley
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...oh, and the topical estrogen, my onc thinks it's ok... but... my gyn won't prescribe it...
Harley
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My onc told me Femara for 5 yrs. I had no Tamoxifen. I'm still doing better taking the pill at night, but I have been stiffer lately during the day-not bad enuf to stop though.
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Joni2
Glad that you are doing ok with Femara. The switch to night seems to have helped you. Good to see you posting again!!
Hugs
Harley
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I have been doing a lot of web research on the timing and risk factors in breast cancer currence because I am thinking about stopping femara. Here, for example, is graph of the relative risk based on years after surgery published on the Arimidex website.
Risk peaks during the first two years after surgery and then declines sharply.
And here is a very confusing blurb about Femara from the Femara website. While Femara is supposed to reduce BC recurrence, it does not increase survival.
What does this mean?
To me it means that (1) either the length of time for long term studies of survival rates on women who have taken Femara has not elapsed yet, or (2) there there are other factors involved with the taking of Femara that negate the benefits of BC recurrence risk.
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bopeep
I'm confused... is this graph supposed to mean bc survivors who took Femara, or untreated? Because, it says *.... UNTREATED is the little square... Sounds confusing to me....
Thanks for researching this. I'm just trying to understand it.
Harley
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I have been taking famera for 2 years after 1 year on tamoxifan, I feel like I am 90 years old. My joints hurt, my shoulders hurt, and my hair is thinning. I am going to the onc. tomorrow to see if there is another option for me. I cannot take this much longer. I have three children and after working all day I barely have the energy to spend any time with them. I want my life back.
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Bopeep
Thanks for your answer (march 4) I just asked because I've hear of it before on this board, spliting pills or skipping days. I always though also it was reasonable to think not everybody needs the same dosage as we do not react the same or have the same weight. You are right in doing what's best for you.
When I had adriamycin I could not breathe anymore so it is really bad that we had to experience it withoug knowing the nasty side effects.
And it's true that researchs contradicts each other, on top of making typing mistakes, makes us wonder all the time if we are doing the right thing.Live and let live and enjoy life is something we have to try to do great advice, have a nice day
Welga
have to catch up on the last messages, so sorry if i'm not uptodate on your other posts0 -
TO ALL THE WOMAN THAT ARE HAVING SUCH A HARD TIME FEMARA AND ARIMIDEX LIKE JOINT PAIN AND HOT FLASHES. I TOO TRIED BOTH MEDICATIONS I DID HAVE HAIR THINNING ALSO JOINT PAIN SO BAD I COULD HARDLY GET UP MY STAIRS. THE HOT FLASHES WERE SO BAD I WOULD SOAK THROUGH MY SHEETS. I HAVE BEEN OFF BOTH DRUGS FOR OVER 6 MONTHS AND FEEL SO MUCH BETTER NOW. MY DOCTOR SAID, SOMETIMES THE SIDE EFFECTS ARE NOT WORTH IT. WE ALL NEED A QUALITY OF LIFE. MY DOCTOR JUST WATCHES ME MORE AND SAYS IF THE CANCER COMES BACK THEY WILL GET IT EARLY. AT LEAST I CAN NOW GET UP THE STAIRS. I BELIEVE TAKING THE PILLS WERE WORSE THAN THE CANCER. I GUESS WHAT I AM TRYING TO SAY, FOR THOSE THAT CAN TAKE THE PILLS GREAT! FOR THOSE OF YOU THAT FEEL LIKE YOU ARE 100 YEARS OLD ON THE PILLS TALK TO YOUR DOCTORS ABOUT NOT TAKING THE PILLS. AFTER CANCER WE ALL KNOW HOW IMPORTANT IT IS TO LIVE EVERYDAY. SO DON'T BEAT YOURSELF UP IF YOU CAN'T TAKE THE PILLS.
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Harley,
You are certainly justified in being confused, I'm confused. My first oncologist was someone who never offered any information, and answered my questions with the least information possible. Patients were dosed out little bits of information on a "need to know" basis. The fact is, is that the doctors and the research they read (really, I don't think they read more than abstracts), and the researchers actually lack the time and intellect we assume they have to make the right decisions for us. The basic approach is Clobber 'em with MEDS. If a pill works, more is better than less, and pills are the easiest way to treat patents. God forbid touching, massaging, dealing with life style issues, eating, all that. Make it neat clean and clinical. And what is more clinical than a pill? It can be measured by dose and makes it easier to generate numbers for research studies. How can you measure things like good diet, fresh air, general well being, or spiritual and emotional fulfilment. You can't. But just because you can't measure these things doesn't mean they aren't important.
OK, I got a little carried away there but to get back to your question about how to interpret the charts, the first chart I suppose--deals with unmedicated patients. But where do they find "unmedicated" patients since the current research ethic is that women included in research studies cannot be excluded from treatment if they have cancer. I don't know what how accurate this graph is or where they got the data for it. They certainly don't cite references. But I think it is fairly well known that the risk of recurrence diminishes drastically after year 2.
In order to make educated decisions about the long term difficult and painful treatments we are forced to undergo, we need to know what the risk factors are for *each* year after surgery and how it declines. Certainly if the risk factor is declining drastically after year 3, why accept the lower quality of life that goes with Arimidex or Femara or Aromasin? And WHY put such emphasis on these expensive prescription formulations when taking something as simple aspirin can be 2 to 3 times more effective at preventing recurrence? Femara advertised its risk reduction percentages from 21 to 27% but the aspirin study showed a risk reduction of recurrence of 71% percent.
The reason for all this mumbo jumbo and confusion is the fact that the medical industry is propelled by the pharmaceutical industry, and that the treatments that get promoted are the ones that provide the greatest profit to the pharmaceutical companies.
It serves us all to be better educated about the medical industry and to be more in touch with what is really important in our lives--quality vs. quantity of life, and the link between emotional and spiritual well being and physical well being.
Bopeep
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Well said Bopeep!
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62 years old here! I have been on femara for six months. I'm sleeping well. I exercise 5 to 6 days a week, aerobic and weight (at least 3 X per week). I'm 5' 8" and weigh 138 pounds. I bench press 50 to 60 pounds. The concern in treat breast is GONE! It was small, definite lobular, but disappeared. We don't know what it was because it disappeared too quickly to analyze. Do I take supplements? Yes. I'm drinking a ton of green and mostly white tea, as well. We can find excuses for not exercising, eating well, or managing our lives. Certainly, there are plenty of reasons. However, break down what you know that needs to be done in a list and make an appointment with each item on the list that might help you. It will add up. The most important thing is to develop consistent good habits and break the bad ones. Look, I've got metastatic breast cancer. It's not curable. But I have a chance to hang in there as long as possible, and I'll do whatever I can. It costs nothing to take an hour walk, no matter how cold it is. Those who are experiencing hot flashes will welcome the cold weather! And you can buy 5 lb dumb bells and do a ton of weight exercises. Doing push ups is great. Begin with a little bit and keep a journal. Work up to more.
None of us can be certain how long we have. Look at Haiti. Look at the folks in Chile and elsewhere. 30 seconds can make a difference. Most of us have much more time than 30 seconds. Make up your mind to make a difference and improve your condition.
I recommend reading Russell Blaylocks book/s.
For women much younger than I am, talk to your physician about being tested to determine if you effectively metabolize Tomoxifen. If so, the benefits are likely the same as for femara. Same for older women. I metabolize Tomoxifen poorly and am not a good candidate.
Many of the supplements that treat joint inflamation and arthritis counteract femera symptoms.
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bopeep,
I agree with you that we should be told our % risk for recurrence for each year... On Monday, 3/15, it will be THREE years since my bc dx...
But, the aspirin thing... I read, and that wasn't a study they did. They just sent a survey to women asking if they took aspirin. And they don't even know the dose that the women took... it wasn't monitored... they may have lied on the survey... I would need to see some REAL studies done. A friend told me that the low dose aspirin is enough, but the truth is that they just don't know.
So... I continue with the Femara...
Harley0 -
I have my appointment with my onc. next week and I am going to ask him about taking the aspirin. I asked my GP about it on Monday (have another UTI, oh joy, oh rapture) - She said you have to be very careful with just rushing in and taking aspirin, even the 81mg. dose on a regular basis - there is always the risk of gastro bleeding. But I will see what my onc. says and report back.
I am also going to ask him about getting a Zometa infusion - when I saw him in the fall he thought it would be a good idea, but I wanted to wait until I started the Femara. I will probably book an infusion in April or May.
I also made an appointment with a clinical dietician who specializes in breast cancer patients, as I have gained about 25 lbs. since starting the Tamox. and Femara - it will be interesting to see what advice she can give me.
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I'm BAAA-AAAAACK!!! Well..what a difference a night-time pill makes! After quitting femara FOREVER, I had another few days break and then started taking it at night. I have not been taking the glucosamine and fish oil, and have been taking the D3s with sliced cheese. I CANNOT believe the difference in taking it at night. I have no pain, I repeat, NO pain. My head is coming good; I think this is because I am sleeping. I actually can't believe I am sleeping! I have remembered the very earliest conversation with my onc about calcium tablets and through the haze came "...see how you tolerate it....". I'm thinking that the supplements might have been causing me some problems. I have to deal with this issue, though, because of the bone loss etc etc.....sigh.....BUT at this stage I can do the femara thing for now at least, and don't feel quite the hostage I did 10 days ago.So, THANKS to whichever of you girls said to give night-time a go. Hot flashes? Yep..but not bad enough to keep me awake all night. xxx
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Caya
Yes, please ask your dr. about the aspirin, and report back. I read that low dose aspirin wouldn't be enough to prevent recurrence... therein lies the problem... who knows how much to take?
kerry-lamb
Oh, I'm so glad to hear that you are doing good with the change to taking Femara at night. I also take it at night, but never thought it would make a difference. I'm hearing from others that taking it at night really does seem to help with the se's. Maybe that is why I am doing ok with it.
Harley
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Kerry, I'm so glad that you can tolerate the Femara now that you are taking it at night. I started it at night, because I had read that it can help with sleep, and lessen the side effects because you are sleeping. I still have some aches and pains, find that I am very stiff when sitting in one spot for a long time (like at my computer desk chair, or a long car ride). But I really want to stay on Femara, so if this is as bad as it gets, I can def. tolerate it.
Harley, I printed out the the whole aspirin study, and will def. discuss with my onc. and report back. I see him next Thurday - March 18.
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I have to agree- since I started taking it at night I have almost no side effects in the joints/muscles--I still get a little stiff when sitting too long, but nothing like before when I had to literally hang on to the table to get myself up--now I can pretty much hop right up!!! Still working on the vaginal dryness.... but I am hopeful that this new development will last until I no longer have to take this drug (which is in 51 months!!!)
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Hi ladies,
I too have switched to nighttime. I did it by delaying the femara by two hours a day. It took 6 days but since then I have been feeling pretty darn good. Maybe it is psychological or not but whatever, it is so much better. I have had some hot flashes mostly just after I get into bed and under the covers but they are minimal. I also have stiffness while sitting too long but by getting up slowly it goes away. I do however have another problem I didn't have before. I have been spotting and don't know if it something serious or just because I had delayed the femara last week. It is minor but I think I'll call my doctor tomorrow just to be safe. Anyone else have this problem?
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Harley,
The fact that women were queried about their aspirin usage after the fact does not make it less of a study. How would a controlled study of women taking Arimidex or Femara be different? A nurse does not come to each study participant's house and administer the medication. The medication is prescribed and the researchers assume that the study participants take it; no one is there to witness and document the taking of the pill. Since when did you or anyone else here ever totally finish a bottle of prescribed medicine on time?
Why on earth would anyone want to lie about taking aspirin?
???
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does anyone have any suggestions on what i can do for the thinning hair, at this rate i will be bald before my femara time is over.
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Wow a lot of discussion since my last post, mostly about the aspirin factor. I'm going to keep checking to see how this comes out as I am VERY interested. I am an old timer on the Femara, but this really intrigues me. What if you are the type to bruise easily as I am.? Won't taking the aspirin make it worse? I've also had capalleries just break in the strangest places since taking this fun pill and its not attractive. What other havoc can it possibly reek? I agree with the fact that after 2 years your risk declines as my recurrence was only 18 mos after my initial diagnosis and it's now almost 7 years since then and I've been fine.
Harley - Don't understand why your gyno won't prescribe the vagifem. My was so sympathetic and wanted me to have a better quality of life. Anyone that tells you that intimacy isn't that important in your life is an idiot. No-one wants this type of control over their bodies. Isn't it enough to go through all the horrible treatments we are put through. Sorry if i'm rambling, but you would think medical science would have a better grip on this by now. Just read the other day that they've tried a new treatment of quick freezing the tumors in mice and that eventually the body killed it off. That sounds like something positive to follow up on. Unfortunately for me there wasn't a single tumor to deal with, it was a cluster of calcifications. At least it's something new.
I agree with a lot of you that the dr.'s seem indifferent to the SE's and we should just suck it up and take our little pill. On the other hand you feel insecure to do anything else as THEY are supposed to know more than you. It's also nice to hear all the positive feelings about the nite time pill taking, me included! I suffered for years and never knew I could feel so much better. I'm going to try Yoga next! Remember, we are our own advocates and should continue to be so! XXXOOO to all.
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Stephanie
My hair line is better with Regain ANA Rogain ANA HairBack women formula is Minoxidil 2g/100ml. good Luck
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Caya
Would you let me now what the deitician says no one here is experienced with BC patients on Femara.
HH
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Holly
I agree with you, on the aspirin thing. I also bruise easily, and would worry that I'd have even worse bruising problems if I took aspirin. Again, they also do not know what the proper dose of aspirin would be, in order to take aspirin as a preventative med... since it was only a survey they sent out, and women replied that they had taken aspirin for aches and pains, that is quite different than taking it Each & Every day. And, from what I read, we would need to take more than the low dose aspirin if we want to take it to prevent recurrence.
I will ask my onc about it when I see him again. It won't be til June.
Harley
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HH - I will def. report back on what the dietician says. I'm seeing her right before I see my onc. on Thursday. He told me last Sept. to lose weight, and I tried, but since being on the Femara - Jan. 1 - it i just not coming off. It's very discouraging.
Caya
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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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