FEMARA
Comments
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thanks for the information, and I am SOOOOO sorry to hear about your dilemma. I'm having my bone density scan this week. I was angry that they didn't give me one prior to starting me on letrozole, but I'm only 4 months in, so I guess that's not TOO bad. I got poopy with my onc last visit, and said I wanted one - and then they didn't get "around" to setting it up, so I called last week and got it scheduled.
I'm sorry to be stupid here, but what is myeloma? Also, why can you not take the bone density drug? If I'm being too snoopy, just put me in my place.
One thing I'd like to note, though, is you've been taking femara for almost 3 years if you started in May of 2009.... However, I see you were diagnosed July of 2009, so you probably started taking it May of 2010???
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Dear Sanaisa,
Please don't be terrified of Femara. That is the most effective non-steroid AI and I will never switch to another AI. And many women have only mild side effects, there may be some genetics involved in it. I am taking Femara for more than 6 months and doing alright but I also get Zometa
which helps a lot. I just got some information from the trial I am in (Femara plus Zometa) - only 1
woman (out of almost 40) quit the trial because of the side effects - usually around 25-30% of women stop taking any AI (not only Femara). I highly recommend anyone to join this trial in Johns Hopkins.On the other hand my Aunt is taking another AI and she doesn't get Zometa - still she has the same level of joint pain she had before she started the treatment - it has not become worse. So you never know.
And another suggestion - go to the pool! It works for me -
sometimes I have painful joints but it will get better after the swimming. I go
to the pool at least 5 times a week - nothing can be better for your joints.Stay positive and good luck!!!
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Thanks New Olga and gardengumby. Definitely, make certain to at least get a bone density scan just prior to starting Femara, and ask for one on an an annual basis thereafter. I have been taking the drug for 22 months and the amount of bone loss I have sustained is extremely alarming. Unfortunately, cannot be going back on Femara.
Femara is known to cause bone loss in users. Just how much bone loss is the variance for each individual. All will have loss...some have a lower and tolerable amount. Others, like me, cannot take the drug. The femara.com website states this right from the onset, look for yourself
I did not really understand the numbers behind the results of the original study: http://www.dslrf.org/breastcancer/content.asp?L2=2&L3=6&SID=130&CID=1393&PID=0&CATID=0
2383 women were put into the trial.1579 took Femara, 804 did not.
2% (31) of the 1579 women taking letrozole had a recurrence compared with 4.9% (39) of the 804 women who chose to not take the drug. This is the 60 percent reduction noted in the media stories. (A reduction of 4.9% to 2% is a reduction of 60%.)
These numbers do tend to show a trend, but they don't show the whole picture. For example, looking at who was studied and how they came to be in the study is important. The women who were "randomly" assigned initially got to choose whether they wanted to start taking Femara, or take the placebo - This means that these results don't come from a randomized trial.
A higher percentage of women who chose to not start taking Femara also didn't have chemotherapy, which could have been a factor in their local and distant recurrence rates. While the researchers did try to account for these differences in their statistical analysis, it could have influenced the findings.Knowing this...I don't know about you...but out of 2383 women, 31 of the Femara takers got a recurrence, vs. 39 recurrence in those that did not take Femara. The % difference between the 31 in test group 1, and 39 in test group two is 60%... but that does not mean 60% of 2383. It is easy to be persuaded by others when they toss around a number such as, "Well, if you take Femara, you have a 60% less chance of recurrence."... These numbers seem a bit deceiving. I did not investigate this study like I should have - because I bought into my doctors' and peers' enthusiasm.
You will likely not end up with the exteme bone loss that I have suffered. But, the increase in your odds of getting Osteoporosis are just about as high as the non-recurrence of CA benefit you will receive - they are about equal. It's a gamble you are understandably willing to take.
Cancer or Osteoporosis?
Anyone would likely take the risk of Osteoporosis over cancer (and I got it). Now I have to worry about a whole host of new problems...and CA recurrence. Bummer for me.
My grudge is that my Onc should have have a bone density scan done at one year post starting Femara (see Femara website for their recommendation). Having understood the Femara test results, and being aware of the chance of getting Osteoporisis would have alerted me to pushing my Onc. for a bone density test one year after starting (just to make sure my body was handling the Femara okay). If the loss was appreciable at one year, my Onc and I would have talked about choosing to stay on Femara and hoping it did not worsen, or perhaps look at altenatives such as putting me on Tamoxifen (while maybe not as effective as Femara, Tamox is still beneficial to post menopausal women, without such high of a risk for bone loss). You both are new to Femara, so you have a chance to monitor its effect on your bones.
Don't go two years, like I did...and get 2 rib fractures, just 22 months after taking Femara.No woman in my family has Osteoporosis, by the way. The change of -1.8 down to -4.9 after 22 months on Femara is a phenomenal amount (words my doc used). You will likely not realize bone loss after only a handful of months on Femara. My suggestion is the ensure you get an annual bone density scan to ensure your skeleton is safe. I am very athletic, 5'4", 110 lbs...always have been fit and healthy and eat well. I am upping the exercise now...I have to stop the Femara, I have no choice. Maybe Tamoxifen....but I don't know. We'll see what the docs want to do. Hopefully there is no other underlying cause (that is still an option). But, general consensus is that this is a direct cause of Femara.
By the way, I also took 6 Zometa IV treatments in a trial, that finished in 2010. Apparently the Zometa did not do much for me?
I wonder if the Femara/Zometa trial is attempting to acertain if the Zometa can aid in the bone loss Femara users experience? Also, I am a very small statured (small boned) white woman. White/caucasian women who are small boned are particularly suseptible to bone loss on Femara (something else I did not know...hindsight!). If you are not white and/or have larger bones, you will very likely not have my trouble The "good" news is that at 48, assuming there is no other underlying cause, I have a chance of restoring some of this loss. Bones are similar to skin in that they can regenerate.Unfortunately, I won't be able to use Eli Lilly's new Forteo drug as I had radiation therapy... But there are other options for for those of us affected (swimming is a good one!!!). Best of luck!
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Dear Sanaisa,
I am 47-year old also
thin white Caucasian - don't know if my bones are very thin or just normal. Additionally I have celiac (when people can't absorb properly minerals and other nutrients), clinical vitamin K deficiency (also affects negatively my bones), Graves disease (antibodies and medicine are not good for the bones) and my ovaries were removed last summer. I do have many reasons to worry about my bones while taking Femara.Still I will not give up Femara because there is a strong evidence that it is the most effective non-steroidal AI. I haven't got any chemo or irradiation but my RS is 20 and I had micromets in my only limph node that were taken out. Who knows if I had more mets in my other lymph nodes. I am not in a low-risk group for breast cancer recurrence and my hormonal treatment is the only treatment available for me. (My tumor was not sensitive to any chemo based on the test so I didn't have it). I think that every woman should know her estimated risk for recurrence - if it is worth 65% reduction that Femara can give based on the latest trials results ( a few actually).
Diet and exercises - are the must. I am planning to have some training to incorporate weight-lifting exercises into my routine I have in the gym. Honestly I love swimming and hate other "heavy-duty" exercises but you do what you have to do :-).
Also I firmly believe in Zometa - it can help not only for bone density but also to reduce the risk for cancer recurrence. Last week I saw my doctor in Johns Hopkins - she said that they believe that Zometa helps reduce the risk for recurrence for women that fit the Austrian trial (pre-menopausal who got ovarian oblation). If my insurance company doesn't pay for Zometa when the trial is over, I am going to pay myself - even if it would cost me around $1000 per shot.
You said that you got Zometa IV and it didn't help you protect your bones. But you didn't get your cancer back either - which is much more important. Also you don't know what would have been with your bones without Zometa.
So I wouldn't give up Femara because the absolute risk reduction was shown (in one trial) as less than 3% - for somebody like me it could be 100%.
Stay strong - and go to the gym - to lift up some stupid heavy stuff I don't know the names for. I wish you get you bones back!!!
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Thank you, Olga! Interesting that one of the tests included in the battery is for Celiac. We will see. I do have Hypothyroidism (oppostite of yours). My Hypothyroidism was caused by my first pregnancy. My doctor, years ago, believed Hypothyroidism happened to me because, as I am petite, my body went into overdrive trying to metabolize and nourish all that was going on with sustaining two bodies. Hormones are amazing things...there is so little we know, but we are learning more and more about how hormones bring, and take life from us.
I called my Onc after stopping Femara. Asked the nurse to please talk to him and have him call me if he had any concerns. I haven't heard a word from my Onc. Guess that's par for the course, considering the fact I wasn't referred for a bone density scan one year post starting Femara. So here's my dilemma... a -4.9 bone density T-Score means that 49% of my bones is gone. While I hope I can regain some of the loss, how is it possible to sustain more bone loss in taking Femara? I made a joke yesterday to a friend who hugged me...told him not to hug me too hard as if he did, I could end up as jigsaw pieces to have to pick up and stick back together. What good is life if I end up not being able to walk or function? I don't know how much bone loss one can sustain to be able to continue walking, or living, but it's a question I am going to ask. If they think I should continue Femara, and have my bones continue to deteriorate, I need to know what the cut off point is. I understand your rationatlization. Even if 1-10,000 people benefit from taking a drug, if that one person benefits from it, it was 100% for him/her. We just need to be aware of the odds, SE's and how to mitigate uncessary injury to our bodies.
Thank you for wishing I get my bones back...
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hello, again, i am still in a quandry about the femara.........not the same indecision that i had before, but a totally unexpected complication. my gynecologist has been keeping an eye on me because of the possible side effects of tamoxifen, and now she tells me that -- at age 59, and after 8 chemos and no periods for over 5 years --- i am not technically in menopause as my fsh is showing i'm still fertile!!!! so i am not eligible for femara, nor can i stay on tamoxifen!! i took my last one last night, hoorah! my gyn says that she doesn't know what to do with me, that she doesn't usually deal with women my age who aren't in menopause, and my onc nurse says she hasn't run into this before either. am waiting for my onc to get back to me. my estrogen was very high when i was diagnosed (probably helped me get bc in the first place), and i have now had an estrogen test and am waiting for that result. the saga continues........
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Hi everyone, exactly 2 years since I started with Arimidex then changed to Femara (inclusive of a almost 2 month break). Never had as much arthritis as I have now. Yet, there were no problems with my bone density test in Oct. 2011. Just suffering more from arthriic pain in legs and back. I used to dance regularly at Zumba classes, but no more. I also have decreased weight in machines. I have had some issues lately and all the tests show are "arthritic". I have told the docs yes, I am on Femara. One doc was not aware of Femara, just Arimidex. He is a spinal injury guy because my back went out, (it could have been too much Zumba) yet I never had this problem before taking anything. I am also 63. Also, after medial minescus surgery, my knees still bother me. Could it be from the Femara???
Hugs,
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Hi Ronqt1. I had miniscus surgery on both my knees about 12 years ago. They were doing pretty well, though until I started on letrozole. Now they both hurt again - and feel really stiff when I first stand up after sitting for any length of time. I walk at least a mile every day and take glucosamine, and that is helping.
My back has been a problem for years and years. It is definitely worse since starting letrozole, but I think that the regular exercise, walking and glucosamine are helping it as well. At least I'm telling myself that, as not taking the stuff isn't an option as far as I'm concerned. But.... one year down - four to go.
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Quck update...a total of 12 diagnostic tests were run on me, due to the significant bone loss I have experienced since having started Femara (22 months) - I now have only 51% of my pelvis remaining. All tests came back within normal limits (cortisol, hormones, multiple myeloma, celiac, parathyroid disease, etc.) - they ran these tests to be certain that there was no other cause to my now severe osteoporosis. My GP is appalled, I honestly think he's disappointed to find that there appears to be no other cause. He told me that it seems apparent the bone loss is directly related to taking Femara (I stopped the medication one week ago) adding that they don't want me to stop taking it (unfortunate was the term he used), but the harm it is causing seems to outweigh any possible benefit. The remainder of our discussion was very depressing. I am being referred now to a Rheumatologist for further evaluation, to determine if there's anything that can be done to hault further loss, or even, repair. I am pretty frightened. 1/5th of all hip fractures end up with fatality, within one year. About as bad as being diagnosed with cancer? I am 48 years old, did ballet, gymnastics and was training horses, being thrown from them, practicing yoga, scuba diving, riding century bike rides, etc...up until mid 2009 when the BC started. Wow...a tremendous decline.
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Sanaisa- that is frightening! Sorry to hear you now have to deal with this.
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Sanaisa, Wow! I just came across your newest posts. I am white, small-boned and petite as well. My onc told me he didn't want to do another bone density scan until 3 yrs out! I guess I'd better get my butt over to his office and demand another scan, too! This is really scary. Please continue to update. There has got to be something that will help you. I can't believe that you said you did the zometa treatments, too!!!! Wow. I'm currently on those and will be hitting my 2 yr mark on femara this summer. I started out with -1.6 compared to same age females. (I was 38 at the time) I don't do much along the lines of exercising, though--uh oh.
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This is a change of topic but one I have seen before. My onc today approved of a 3 week vacation from femara because of the list of aches and pains I have been experiencing more and more after 18 months on femara. Please tell me that I will have a chance of feeling better because a sil has tickets for us for the Masters in April and I so want to be able to go. After 3 weeks he will evaluate and have a new proposal. I feel lucky to have such an understanding and sympathetic oncologist.
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I took a self-imposed sabattical from Femara from mid Nov '11 to 1-1-12 (I had been on it 2 years when I took my break) ; I feel LOTS better! Don't know why, just know I do.
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My doc says I could stop taking it too for 2 weeks but I'm too afraid to do it. Am I being silly? My aches and pains are tolerable and I guess I'm afraid that when I go back to the pills I might be worse. What do you think?
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my aches & pains were "tolerable" too, but by the time I took my break my pain medication consumption & over-the counter crap had increased significantly. I only take a pain pill maybe once every 10 days or so now. I still do Ibuprofen fairly regularly but it's for other than joint pain.
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So sorry to read this. I know all the AIs cause bone loss, but had no idea they could case such bad bone loss. My bones are at 65 percent which is not that good either. I scheduled a bone density test myself because I hadn't had one in a couple of years. I was concerned about my hip which fractured in 2009. But the tech told me they can't scan the hip because it has 3 pins in it. So I guess the only way they can check to see if that hip is still holding up is to take x-rays? My other hip is in "severe danger of fracture" Since I already had a broken wrist in 2008 and 3 spinal fractures last year I have decided to stop taking the AI. (I take Aromasin, not Femara) to me it is not worth the risk, but I am a lot older than you (76)
PS In my case, all my fractures occured before starting the Aromasin so can't blame them on that. But I am very concerned about future breaks due to the osteoporosis.
Best of luck. It is horrible to have to worry about your bones as well as cancer.
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dogs and jogs, Have you asked your MO about taking a Prolia shot? I have osteoporsis and I am on Aromasin. My MO is having me take the Prolia to help counteract the bone loss from the ALS.
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I just found out my insurance denied any further zometa & probably deny Prolia if I don't have osteoporosis. I was dx 5/11, began lupron & femera 8/11, first zometa was approved 10/11. Now in the new year they denied it. Gotta get some mental strength for one more insurance battle. In the midst of two issues right now!!! Argggg...
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Sanaisa
I really appreciate your thoughful, researched posts. I was young 42 when dxed fit and otherwise very healthy when dxed as well. I had chemo and then Femara after ONC felt I was in chemopause I also suffered bone loss but not to the extent that you did. I had many problems with Femara and after a year went off and just took Zoladex shots to keep my ovaries asleep. (not without side effects as well but does keep estrogen levels to a minimum <10.)
I am a supporter of all drugs that have been proven to minimize recurrance and my stepmom is a 18 year survivor after 7 years of tamox and 5 years of Femara. The only thing I would like to say is take a look at the big picture, most of us are so horribly panicked after dx that we will do anything to prevent recurrance but we have a hard time looking to the future of what all this treatment may do to our bodies in the long run. Bone loss is more common than you think and my hairdresser had the same ammount of loss as you and now 9 years later at age 56 is very limited in her life due bone loss and is dealing with another medical crisis. A large percentage of woman with bc will survive the disease which is great due to the drugs that have been provided but some then go on and have new crisis osteoperosis, heart disease (due to high cholesterol from lack of estrogen). My ONC actually wants me to go off hormonals at 5 years as he feels my risk of heart disease from lack of estrogen that in turns drives up my cholesterol will be more of a real risk than recurrance after 5 years. Just some thoughts (not against anti - hormonals at all) just a big picture view!
Sanaisa I am not sure if yoga interests you but after my bone loss I took up hot yoga "bikrim" and after one year I repeated my DEXA and had significant improvement I was also off the Femare that year and on NO bone builders. Just a suggestion that oviously must be cleared through your MO.
Good luck to you, did they also check your vitamin D level recently?
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I haven't posted on this Femara thread for a while, either.
My previous post concerned cataracts, but I have also experienced trigger ring fingers and a trigger thumb. So far, cortisone injections have helped.
Writing tonight, tho, about facial hair. I was trying to look closely, but it's difficult with and without my glasses, but my goodness, there's a considerable amount -- down around my jaw line and fine hairs on my chin.
It's hard to know if this is Femara's doing or being post-menopausal. But I'm definitely getting furry. I don't know what to do and actually a little embarrassed.
Take care.
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I haven't posted on this Femara thread for awhile, either.
My previous post concerned cataracts, but I have also experienced trigger ring fingers and a trigger thumb. So far, cortisone injections have helped.
Writing tonight, tho, about facial hair. I was trying to look closely, but it's difficult with and without my glasses, but my goodness, there's a considerable amount -- down around my jaw line and fine hairs on my chin.
It's hard to know if this is Femara's doing or being post-menopausal. But I'm definitely getting furry. I don't know what to do and am actually a little embarrassed.
Take care.
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Hi; regarding questions of vacation from meds.
I took a 2 month vacation from Arimidex, felt great immediately, switched to Femara and had to stay off for 2 weeks. For me Arimidex was the killer and am glad to be on Femara. 3 more years to go.
Hugs.
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mollydog - some facial hair (yucky) is a family trait for me and I started long before menopause - it's just getting worse...
Anyway, I use wax to remove mine. It's a pain in the patootie, but it works, and I don't have to do it too often.0 -
Gardengumby, you don't find the hairs grow back more coarse or darker, anything like that? Thanks for the suggestion.
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My onc wants me to switch from tamoxifen after 1 year of no periods to femara. Any thoughts about a 'wash out' period between the two drugs? She said to finish the tamoxifen and then start the femara but I was wondering if I should wait a couple weeks between stopping the tam and starting the femara.
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No, the hair just seems the same - unfortunately, it does grow back, but no different than it was pre-waxing.
Omaz - I went from tamox to femara, but had a couple months between. four more years, then no more drugs!!!! Seems like forever, but man am I ever looking forward to it!
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garden - You did a couple month between? Did your onc suggest it or on your own? I have read that it takes a while for the tam to get 'out of the system'.0
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What time of day is best to take Femara? I was wondering if I took it before bed perhaps I could be asleep during the worst of the stiffness.
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That is exactly why I take it at bedtime and it worked for me.
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It doesn't matter what time of day you take it as long as you take it at about the same time everyday. Taking it at night seems to solve a lot of the problems that it can cause. I also take mine at night.
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