FEMARA
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eph3 - same here re: belly expansion...that is where I was gaining - nothing like an expanding waistline....scale isn't that much higher but couldn't zip my pants!!! I have never been a runner, so far it is working. I felt fairly defeated when I started Femara like that I was destined to be chubby, so i'm happy to see some results.
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Hi everyone, yeah I'd be afraid of passing out for sure. But I walk also.
Sorry you fell Kathi. I hike alot in steep terrain and I am worried about the Femara. I already deal with just about all its side effects every day from CFS/FMS and Spine problems, except the hair loss, so not looking forward to it! In fact I do remember alot of research about FMS/CFS that adrenal blowout can cause the FMS symptoms, which is exactly what we are doing now. Downright crazy thought, but I need to know exactly what they are shutting down in my body and where I can get a test to see what I hve left producing to begin with. Any way to track the production rather than the destruction by the drug? Thnx if you have any links to that.
Due to start the Femara, after radiation. I need to have a long talk with the Onc. I'm beginning to wonder myself, Jacee, if the pill isn't too strong to begin with for everyone! Remember birth control 30 years ago? 10X too strong! I think we should all speak up about this. It's just not right, and does anyone know exactly how much production of their adrenal glands need to be shut down to be safe? I've been researching that part and can't find much. All I have found is thousands of women who are suffering from this drug, which is widespread.
Sometimes I wonder about the drug being too high a dose, just to make sure [for the drug company] that the numbers beat the Tamoxifen, because one must REALIZE this has to happen if they want to sell it! ;~) And I'm in no mood to age myself to 80 in a hurry, just in case I don't live that long! [jus some funny, realistic sarcasm which I have developed recently. Please excuse... lol]
Take care everyone. I wish the very best for all of us.
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soulswithin-Very interesting line of questioning you bring up. Have to admit I'm a dog in a dog & pony show--do as I'm told, don't question very much. I think that the line of thought of determining how much one's body is producing before being placed on a one-size-fits-all pill is a great idea. I'll be asking at my next onc appt which isn't till Sept, but I'm writing it down now, so it doesn't pass thru my swiss cheese brain! Thanks!
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Guess I'll chime in here. I have been taking Femara since May 4. I developed terrible hip pain which made walking UP steps difficult. I have gone to chiropractor 5 times, and he really worked my hip joint over. Surprisingly, hip is much better!! When I first started on this drug, I had hot flashes, night sweats and woke up in the night unable to go back to sleep. I was also very irritable. Mind you, I went through menopause over 10 yrs ago!! Onc put me on a very low dose of Effexor (25 mg). It has helped the hot flashes tremendously. I also take the Femara at night about an hour before bedtime. I still wake up at night, though, but I did that before all this cancer business, too.
I am 62 yrs old and have gained 15 lbs since doing the chemo and being on this drug. Bottom line -- I now have a big belly!! Ugh!! I have to get with an exercise routine, but the hip pain has made walking difficult. I'd like to hear from other 60-something women as to how you are doing on this drug.
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Emegram -- I'm a year younger than you and have been on Femara for 21 months. I've also gained about 15 pounds -- ALL around my middle -- and although I go to the gym regularly and am quite proficient at sit-ups (!) and walk a great deal, and have a pretty low-fat diet and small portions, I just cannot lose this weight. Unlike AprilGirl, I cannot run -- tried it last summer and did some damage to my knee so that was my warning that running is not for me!
As for aches and pains -- I do go "Ouch ouch ouch" when I get out of bed in the a.m. because of really painful feet, but a hot shower gets rid of overall aches. I did have some months of very painful wrists, but now that seems to come and go, usually with weather changes.
Never really had hot flashes during menopause (just "warm" ones!) and haven't experienced any on Femara. However, the one SE that I really find annoying is daily sinus-like headaches. They usually occur in the afternoon and I've ruled out everything else (process of elimination) so I'm fairly sure it's the Femara (which I take in the evening after dinner).
So that's my story!
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My side effects from femara went away after one year but unfortunately femara is no longer available in my country. I`m from Bulgaria in Eastern Europe.They substituted it with a chipper one. The side effects are terrible,I feel nostalgy about the time i was on femara.
Best wishes
Krissi
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Re dosage
I found this on a body bulding site which discusses Femara use to reduce estrogen:
Chemical Name: Femara
Drug Class: Type-II Aromatase InhibitorLetrozole is Novartis' entry into the breast cancer treatment world. It's a Type-II Aromatase Inhibitor (AI), which means that it competitively binds to the aromatase enzyme and inhibits the enzyme's ability to metabolize testosterone into estrogen. This drug was developed to fight breast cancer by inhibiting the aromatization.
Letrozole is probably the most powerful Aromatase Inhibitor used by athletes today. It has been shown to reduce estrogen levels in women with breast cancer by 98% or more (1). SO clearly, it's useful for administration to male steroid using athletes who are eager to prevent some of estrogen's nastier effects on their bodies- development of breast tissue, water retention, etc...
.... As you can see, Letrozole is a very powerful drug, and as a result, only very tiny doses are necessary. An effective daily dose of Letrozole for most people is usually about .25-.5mg/day, even though clinically, it is typically used at 2.5mgs/day. Twenty micrograms of Letro was enough, in one study done on men, to reduce estrogen levels by almost a third. (4)
Letrozole's effects on cholesterol are, really difficult to pin down precisely. They are, in the words of one researcher: "inconsistent." I can tell you that in my opinion, reducing your bodies estrogen to virtually nothing, will eventually take its toll on your cholesterol profile, and will kill your sex drive and your joints- all of which require estrogen to function safely and effectively.
Even if you take very low doses of Letrozole, it will build up to reasonable blood plasma levels, as it has a 2-4 day half-life, and this long half life also means you need to take Letrozole for 60 days to get a steady blood plasma level (5), and that it will take a very long time to clear out of your system.The whole article can be found and there are plenty of similiar articles if you Google femara bodybuilding.
These articles show that on these men, who have larger bodies than us and take drugs that increase estrogen production markedly in their bodies, that a very small dose can be effective in reducing estrogen production to virtually nothing ie .25 - .5mg and we are taking 2.5mg. However, having said that, when they use it clinically to treat gynecomastia (enlargement of the breasts because of steriod use) they build the dose up to 2.5mg over 5 days, retain it there for a week or so and then reduce the dose gradualy over another 5 days. From reading, I think we are probably right to assume that a lower dose may well be effective for some of us but I think it is a bit of a gamble to just drop the dose without having tests to monitor our estrogen levels before and after dropping the dose. My other thought is that when we go on other drugs for cholesterol or high BP we are usually started on a low dose and then tested to see if it is effective and then the dose is adjusted up if necessary. If Femara is so potent why doesn't this happen with this drug too? I can see that oncs want to use a sledgehammer approach to stop any cancer cells in their tracks but surely it would be possible to safely adjusted the dose down over time if SEs are a major problem?
As with all this BC treatment we have to be proactive and ask the questions and maybe patient pressure over time will alter the way things are done.
Rae
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Thanx for the useful information, Rae and everyone. Sorry I took so long to get back here.
I've had Shingles lately and still have one more margin surgery this Fri, so I had to get away from the cancer stuff and keep my mind free of stress. So I took off and rented a boat and photographed bald eagles and bobcats. A great distaction! ;~) You can see why I worry so much about the Femara and I'm not even on it yet. It takes everything I've got physically to do what I do at age 61, and Femara may put me over the edge of not meeting the physical demands I already endure.
I've already gained 8 lbs. and havn't even started femara yet,
and swiss cheese brain it is since the surgeries. Headaches from another heart pill I take, FMS/CFS fatigue and pain, spine and joint problems already! Exactly, Rae, I understand why the doctors want to sledgehammer the cancer, but I think it will take another 5 years until they figure out dosage......in the meantime, Femara is making the drug companies a ton of money and we are the ones making their agenda trials successful, and we remain alive, our lifespans result won't be available for years to come. Thanks for the leads on doses for athletes.
Hope your days are good ones this week! I've had a few glorious days with wildlife this week, and now happy to settle down and get this 3rd and hopefully LAST margin surgery done friday! I'll face the radiation/femara anxiety later I guess.
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Recurence or poor quality of life that is the question...or maybe not.Who knows?
Is there any valuable statistics about how long femara could keep us cancer free?
Thanks for your postings with useful information.
I am glad I speak English good enough to read them and wishh you all the best and enjoy the summer!
Krissi
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Krissi
You do very well with English. I wish I could speak another language but am glad my native language is English as I believe it is very difficult to learn.
Aromatase inhibitors (AIs) are relatively new drugs so there are not very many statistics available on their effectiveness long term. As soulswithin says, those of us who are taking the drugs now are the ones trialling the drug long term so it will be a while before many valuable statistics are available. In theory however, if hormone therapy works for an individual, it could keep us cancer free forever but the side effects from estrogen depletion (which is what the AIs do to us - stop our body producing estrogen) long term are not good - organ damage, especially heart being the worst. My concern about Hormone therapy is that it does not kill the cancer cells as chemo does - it only stops them growing, sort of puts them into hibernation. The hope is that the cells will either naturally die off after a certain length of time or will 'starve' from not having estrogen to grow on. When I asked my onc how long the cells take to die he said they do not really know and it could easily vary from person to person so the standard time for taking AIs, if it is 'insurance' HT, is 5 years (the same as Tamoxifen) hoping that that will cover everyone. Women with a higher chance of recurrance however are commonly kept on HT for longer ie some women are on Tamox for longer than the standard 5 years and some women have 5 years Tamox and the 5 years of AI.
Wish it was summer here - I am in New Zealand and we are in the middle of winter
Rae
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Rae
Thank you!
My own researches gave the same results. All my information is from Internet though.Doctors here are very reluctant to speak with their patients .
So enjoy the winter then. The temperatures here are above 90F/30C.
Krissi
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while taking femara what is the survival rate increase. My onc told but can't remember what she said
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Hi Nanna,
I think my onc said around 50% less chance of recurrence but I don't think she gave a survival rate as that depends on so many other factors too, it all depends on your initial diagnosis and prognosis though, what your % of ER & PR+ was. For me those % were high, around 85 - 90%, I seem to remember. Unfortunately, or fortunately, we get bombarded with so much information early on that it all seems to get confusing, maybe it would be a good idea if they gave us information drip by drip so we could digest everything. I have come to the conclusion that it's all just a guessing game, they give us all the means available to try and fight this thing from coming back but in the end it's down to good luck and fortune - we have to remember there is no cure right now, just ammunition to keep fighting back. We are fortunate that we have all the medical means we have, years ago many of us may not have still been around to tell the tale and complain about the side effects of the drugs we take - that's the conclusion I have decided to come to, let's just be thankful for what we have and take each day as it comes.
There is a thread going on right now on ARIMIDEX where ladies are "fighting" over the whole survival rate thing, it's getting quite heated and I'm not sure it's all worth it, but maybe you can find some answers there.
Best wishes for the weekend,
Gaynor
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Gaynor - I am with you on the statistics issue. We know Femara helps - and that's all I need to know. The statistics can't tell on what side of the numbers any person will land. There are no guarantees.
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Has anyone lost weight while taking femara? If so how did you do it.. I am not having any luck
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Not me - I gained about 20lbs in 6 months and only managed to stop the gain when I got my sore joints under control a bit and was able to get back to regular exercise. Haven't lost any though as I can only walk, ride and play tennis a little - used to run 5 miles a day and that kept my weight just right.
I am thinking I will just have to go on an 'eating less campaign' for the first time in my life. Don't want to call it a diet cause I will never stick to it.
Rae
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Hi Girls... I have an un-opened container of Femara - Letrozole Tablets - 2.5 mg - 30 tablets....free to good home. My Onc gave them to me and I decided to not take them. I will be happy to send them to someone here - hopefully to save someone "a few bucks". PM me if you're interested. Be well. Best wishes to all of you!
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Haven't been on here for a few weeks. Looks like all of my complaints about Femara are shared by most of you. Went to ONC last week and talked about my joint aches. Told him that with the research I'd done I knew it was from the Femara - oh no, he wants to check me for rheumatoid arthritis. Also took me off the Femara for 2 weeks to see if I feel better. Gave me Tramadol for pain. Felt like it was working first few days, but other than making me really sleepy, don't see much difference. I actually have lost some weight since starting the Femara. I seem to get full quicker and make myself just stop eating at that point instead of finishing my food.
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So much info .... after skimming through the posts here I am as confused as ever ... LOL
I was declared in remission just this last wedneday. I started taking femara the same day. Less than a week & I am already having significant side effects ... muscle pain and weakness, joint pain, and nausea. These are very similar to the effects I felt when I was having chemo. I do have RA (rheumatoid arthritis) ... but the way I am feeling is worse than a usual flare up. I have been taking motrin....it is not helping the pain.
I know that recovering from cancer takes time ... and chemo & radiation effects can last a long time. And now side effects from Femara ... this is no way to live
During radiation I started walking and doing water aerobics .... I want to be able to continue these activities ... but hard to do with so much pain.
I plan to call DR tomorrow and hope he has some answers for me ......
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njdalex10 - What you are feeling seems to be the normal side effects of being thrown into the deep end of menopause due to the Femara stopping your body from producing estrogen. Estrogen is needed to help joint movement. I have taken to taking my little yellow pill at night. I take 1500 mg of Glucosamine HCI and 2 Aleve every morning - major difference in my joint pain. Still working on not being able to fall asleep and the hot flashes - but at least I don't feel 20 years older than I am anymore! Best of luck to you. I think you will find that your DR will not have much to offer you in relief of your symptoms. They have a tendancy to brush our aches and pains aside since they've taken the cancer out of our bodies - stop your whining about a little pain.0
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Femara makes me hurt in places that I didn't know I had on me.
I've been given prescription after prescription for various SEs to the chemo treatment, so I know when the worst of the worst started. It has to be the Femara. I have had pneumonitis and other breathing complications. I really don't need something that makes it even more difficult to breathe.
Most medications say that the physician has decided that the benefits outweigh the side effects for you. Horse hockey. I'm not buying it.
sessna1
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I just got that same diagnosis from blood work. I'm wondering if that just shows up in people on femara, or people who have been through chemo. Maybe doesn't really mean we have an autoimmune diseaese.
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Wow...again...I just started taking Femara, a couple of days ago, and I'm ALREADY feeling these AWFUL ses!!! I almost feel like I'm going through chemo...
It's good to know this thread is here, as I'm sure I'll be coming here quite a bit now???
I hope y'all have a good week, or as good as can be???
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I haven't posted on here for quite a while-doesn't mean any of my side effects have gone, tho. I have been on femara since July of last year and side effects are worse now; doesn't seem like anything gets better. Besides the side effects I had been having, am now getting the headaches in the pm around the same time every day. My left arm (most lymph nodes removed in 94 with mastectomy) is giving me fits. Underside is numb from wrist up to shoulder; but still "burns" at times; it is swollen more; and the lump under my arm (recurrence in May 09-surgeon couldn't get it all because had attached to an artery)-well the size of it has changed in the last month. I have an appt with onc next month. Am anxious to see if everything is ok or something going on. The worst side effect is problems I am having with my respiratory system BUT my onc doesn't want to hear this. Kind of funny, tho, didn't have this problem til the femara got into my system really good--like 6 or 7 months. Is anyone else having this problem? PLUS I look like a 64 year old pregnant woman; I know I am getting older but this weight gain is ridiculous. I went from size 12 pants to 16 and have to take up the legs because they are way too big-must get this size tho to take care of the "belly". And have to buy larger shirts to hide the stomach!!! I am afraid to stop the femara tho, mainly because they didn't get all of my cancer and the dr. says it will choke the cancer to death. Guess we will see!!
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Getting ready to get zometa infusion.I was just wondering if after you get zometa infusion do you have to keep taking those calcium and vitiamin d pills
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THat's a good question. Does anyone know?
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Has anyone figured out a way to kick start some weight loss on femara? Seems like I am stuck no matter how little I eat
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I've really thought about the weight loss thing. For some, I wonder if it is because Femara has put you into premature menopause. I had already gone through menopause before being dx. with pc. About a year before being dx with bc, I found out I was diabetic. I lost about 45 pouds prior to mast surgery, etc. I gained back about 20 of those pounds during chemo eating too many carbs. What it took before bc to lose this was to restrict my caloric intake to approximately 1100 calories a day. After about 3 weeks of this, the weight just fell off. I haven't been able to force myself back to that strict routine again, but I have lost a few pounds recently by just cutting back on portions, not snacking on carbs, etc. I just don't know if I even start this again, if I won't lose. That would not be fun.
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With nothing else working, I have decided to walk 3-4 miles every day..no matter what!! I've lost about 3 lbs. in the past 4 days. But, I can lose that much in a day some times just between morning and night. Then bammm, it's back the next day. So will just have to wait and see how this goes.
FYI--I'm one who cut my femara back to 1/2 pill a day due to s/e's. I've been on 1/2 pill for a month now after taking 6 weeks off. S/E's didn't go away during 6 weeks, but haven't progressed any further either. Still severe joint pain, terribly painful feet with numbness....surprisingly, my feet don't hurt when I walk. Hoping the walking gets me in shape. I'm having reconstruction on Sep 3, and know I'll be down for a few weeks at least.
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Did anyone start having ses immediately, after starting Femara, or am I the only one??? I think the 2nd day I started taking it, I started feeling the effects...and damn it all to hell, if I have to feel like this for two years??? Y'all are troopers for dealing with the ses!!!
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