FEMARA
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No one hates Femara more than I. The SE's somedays are very bad but I would not consider even for a moment to stop taking it. My estrogen and progesterone receptors were very high so I have to continue with it. I have two new grandchildren on the way so I am going to do whatever I can to ensure the best chance that I will be at their weddings.
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kathimdgd thanks for your thoughts and in my scan it says I have gallstones but not enough to worry about is what the onco. tells me, I have advil don't know if that is ibprofen kind, but it worked last night.0
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blondiex46 that's funny about the gallstones. How many other people found they had them? My surgeon said I showed with some, that 80% or more people have them and don't know it. He said I should call him if they ever acted up - I promised I would.
dkerler - I'm with you on putting up with the Femara aches and pains. They are much better than the possibility of breast cancer again - I would far rather see my two little grandchildren grow up,watch my interesting three children progress and find out if I could ever become a good bridge player.
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dekerler and lassie11 - my girls are 20, 20 and 18 but they still need their Mum so I'm taking it no matter what I have to put up with - I am going to see my girls graduate university, find their partner in life and then have grandbabies if that is their choice. I have been taking it for over a year now and was fine for the first 3 months and then the SEs hit. Could hardly walk my feet were so sore and my hands and knees just ached all day. I decided I just had to get the SEs to a level I could tolerate so I read lots of stuff and started taking glucosamine and condroiton and that took the edge off the pain after about a month - ran out of the first kind and brought another which was a BIG MISTAKE as the SEs came back -so I went back to the dearer sort. But when I did any major exercise I would suffer again afterward. When I mentioned this to my GP he gave me some Voltaren (painkiller and anti inflammatory) and said to take one the night before I was going to do any major exercise ie a tennis tournament, one that night and one morning and night the next day, his reasoning being that if you have the drug in your system before you do the exercise then the 'damage' won't be as bad. It works!!!! I can now play a day of tennis without suffering for days after. I take it for a couple of days now and then just to get some relief from the constant pain which is nice too.
Bed time for me here in NZ so good night and enjoy your day ladies.
Rae
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I have been on Femara for 5+ years. My onc is keeping me on because of the number of nodes involved. SEs were not too bad.....had horrible hot flashes before I got on it. I have noticed just the past couple of weeks, however, since I have not been able to exercise due to a knee injury, that my bones/joints are aching horribly. I truly believe exercise is what is helped me maintain the comfort level I was for all the years while taking it. Bone scan recently showed NED and x-ray of knees shows arthritis. Can't wait to get back to exercising tomorrow.
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nursecal how long did your onc say you would have take it?
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She did not say. She was going to stop it at the 5 year mark but when discussed how many nodes were involved she decided for me to stay on it. I have been trying to read more about research done after 5 years and am finding that that is still in process. If anyone knows of some further research after 5 years please let me know.
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Had a bone scan last week that showed NED. However, showed a rib fx with no idea of how tht would have happened. So.....having a PET/CT tomorrow to confirm. I do know Femara is bad on the bones.......but it sure has seemed to help me for 5 years. Just don't want to stay on it if no evidence that continuing after 5 years is a plus.
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Caren
I was dx Jan last year and started Femara April. In NZ the standard time span an AI is given is five years but my onc said that the AIs are reasonably new drugs and research was being done all the time so at the end of 5 years 'they' may have decided that taking it for longer is beneficial and so it would be prescribed for longer. The problem about how long to take it is that they don't know how long the cancer cells can survive before they naturally age and die but they think that 5 years pretty much covers it as the recurrance rate drops after that time. But what happens if they are made dormant because of the estrogen depletion, will they age and die or will they come to life once the drug is stopped? And do the more aggressive cells last longer or does the fact that there may be more cells around the body make a difference to how long to take it? It seems that a lot of women take 5 years of Tamox and the have another 5 years on an AI but people who are post menopausal are usually given only the 5 years even if they are younger. I suppose it is all a bit of a gamble really based on statistics - and some doctors are maybe just more cautious than others and so suggest it may be better to stay on something in case and if you are not suffering bad SEs I guess it wouldn't hurt. It would certainly help me emotionally to keep taking something - half the battle with this dx is that feeling of if or when it will return. I have 4 years to go though so will just have to wait and see when that is up.
End of a long week for me - feeling a bit
NIght everyone, Rae
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raeinnz,
My onc has already told me 10 years. As you mentioned,she says that the cancer cells are dormat while on the Femara,then you stop taking it and --- well. Thats what she is afraid of! So we shall see. saltkm
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saltykm
eeek! I was just thinking outside the square and your onc said that! I am definitely going to be proactive about a longer time when my 5 years is up! I like the sound of your onc ... we trust the medical people to know the best way to proceed and I don't think they should gamble with our lives - if they are not sure because it is a new drug, they should just keep people on it until they do have some solid evidence to back up a specific length of time for taking it. I guess the flip side of that is that they also don't know the long term effects of estrogen depletion on our bodies - however I wouldn't think that would be fatal but a return of the cancer could be - a no brainer for me!
Enjoy your day ladies
Rae
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Rae, everything you mentioned is everything, of course, that has been going through my head. I trust my onc and will continue as she feels best. Got PET/CT restaging results today showing NED, so seems she must be doing something right. The SE being more severe now might be due to the Femara or perhaps withdrawal from the Effexor I was on for hot flashes. Whichever, I feel right now I should remain on the Femara, even though research is still ongoing as to the pros vs cons on not knowing longer effects. SEs do seem to be getting better, so I am highly suspicious that they are response to the Effexor withdrawals. I did not realize how dreadful the SEs for Effexor withdrawal are........am hoping I can reamin off SSRIs (flashes are still there but not so bad). I would rather suffer the flashes (means the Femara is working?) than go back on. This is a confusing journey we are all on and I truly feel I have been blessed throughout my life, but especially over the last 5+ years. And of course the news today makes me believe this even more. Thanks for your input.
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Caren
Yay, great news on the clear restaging results - that little yellow pill is a life saver, no doubt about it!
I agree totally about the confusing nature of BC. I have just seen a Bob Dylan quote on another thread which said 'there's too much confusion, I can't get no relief' - that sums up life with BC doesn't it? I'm with you, I will take the Femara as long as my GP will prescribe it - peace of mind is a very underrated!
I haven't ever had medication for hot flashes - I just lived with them hoping nature would take its course and that they would settle in time. The Femara certainly revved them up though but I THINK they are starting to calm down a bit now. I used to have one every hour or so day and night winter or summer but now it is about every 3 or four hours and sometimes longer during the day - still quite frequent at night though. Oh the joys of womanhood and BC
Rae
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Raeinnz - the problem with estrogen depletion is heart disease. This is what has not been studied as a side effect to Femara. This is not what is even listed as a side effect to taking Femara or any of the AI's. Every doctor will tell you a different story as to the effects and benefits of taking AI's. I'm sitting on the fence right now - I stopped my Femara 7 days ago to get back a little quality of life. I'm 56 feeling 76 all day. I want to stay off for a month to see if I feel better. I may or may not go back on at the end of the month. I truly wish there was a substantial study done to PROVE that Femara keeps the BC from returning. At this point, I think everyone's opinion is a guess as to the benefits.
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I am under a cardiologist's care and get an echo every year due to aortic regurgitation. So far so good. No change over the past five years....as a matter of fact just a little change in a positive way. Whether or not the Femara is "masking" the recurrence or not, it, I believe, has given me 6 additional years so far (14/32 nodes isn't so great). We all have to make our own deicisons, and whatever that might be is personal.
Rae, I think I said it earlier.......the flashes are getting better for me too.........postmenopausal when I was diagnosed...........Just tell myself "this too will pass"............Have a better day tomorrow I hope.
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wblibrary,
So true. I agree with you. It's all guesswork as to the benefits that we are getting. And again what you say about heart disease, is true also. Blood pressure goes up with AI's and high blood pressure leads to serious heart problems. I am on an Arimidex leave of absence at the moment...it's been 6 weeks now and I feel great - SE's are all gone except for one. Onc. said he would start me on something else....but what I am reading here on this website...all the AI's are the same...we have to deal with the same SE's. These AI's deplete estrogen...and the result is the same.
I am currently "shopping" around for alternatives, I may combine holistic treatment with the "other drug" that the oncologist has up his sleep for me (but cut it in half). I am a bit older than most (65) and admire the courage of the younger women. I worry, though, about the pain killers they take and the damage they may do to their livers. I hope they check with Dr. Lee's Book "Breast cancer and what your doctor may or not tell you about breast cancer." He has a list of foods to keep the liver healthy.
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Wblibrary
Good luck with your vacation from Femara. I hope you are feeling better!!!
Harley
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I just started Femara 1 week ago and am feeling ok so far. When do the SE's normally start showing up. My onco said to try it for a couple of weeks and then give her a call and if all is well she will write me a perscription. Is a couple of weeks enough time to know?
Flo
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Flo, everyone is different re: SE, but I 1st noticed mine a couple weeks in. I did switch to taking the pill at nighttime after a couple months-that really helped me, especially with fatigue issues. Good luck.
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I didn't notice SEs until after about 8 weeks. I also take it at night which is so much better.
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Thanks for the info. My onco said to take it in the morning, I wonder why? I have been wondering if I was feeling tired from the pill or left over from radiation. I had thought I was getting over the rads fatigue. What about you long term users and bone lose, has it been a concern?
Flo
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grama5
My SEs didn't hit me until about 3 months and then they hit. Have managed to lessen the achy joints and muscles with glucosamine/condroiton tablets and the fatigue has gradually lessened over the last 14 months. Hot flashes were revved up again but are lessening again now. Didn't make any difference when I took the pill, same SE's.
Fingers crossed you will be one of the lucky ones who has no SEs.
Rae
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Thanks Rae I hope so too. How are you doing on bone lose?
Flo
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Flo
Bone loss is an issue to me I am on Zometa now, check your BMD .
HH
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dang, wblibrary, at least i don't feel i'm a nut case! I hope like heck the break gives you the rest you need. Maybe we can try it in stages, you know? I am trying like heck to exercise and to lift weights--and ladies, i'm no sissy--but I keep getting weaker and weaker in my hands. we do not talk about my feet at all, oh no. If I can hold on til July, i'll see what the useless hemo has to say. i trust my surgeon, and will see him in august. meanwhile, it's G/C, Ibu, Celexa, and Calc/D pills...in addition to the Damned Femara.
Like you, i'm not willing to compromise my quality of life too much more than i have already...and mine was so much less invasive and serious than yours was! Mostly my SEs have been depression and joint/muscle pain. and weakness. ( i don't even count hot flashes...)
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Living under the bird - I don't appreciate being called a nut case because I want a better quality of life. Everyone has their own version of "living". You have yours and I have mine. I thought this was a discussion board for support - why are you here?
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Flo
Fortunately bone loss is not an issue for me. When I went for my bone density scan the lady said my bones are so dense the extra loss due to Femara over 5 years wouldn't even bring them down to normal for my age. Surgeon said he would normally schedule a bone scan every year until I stopped the Femara but that I probably didn't need it but he finally decided to schedule a scan in two years just to check.
Bonnie
Had the same bad feet as you and other SEs and the glucosamine/condroiton with supporting minerals worked for me too after a month or so. I started with capsules and when I ran out and bought a cheaper kind in pill form and the SEs came back so I went back to the more expensive kind so I suggest ladies try several different kinds of glucosamine/condroiton products if the first one doesn't work as they are all different strengths and have different minerals or herbs mixed with them. It doesn't fix the problem completely for me either but I can live with it now.
Rae
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Gg08 - thanks for the link. My Onc just started me on Femara and I found out today that my insurance won't pay?? I haven't heard of this before. The pharmacy was going to call the Onc today and ask them to fill out some paperwork for the insurance to try to get it through. We have Aetna HMO. Anyone else have this problem?
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My onc gives me samples-it's a God-send.
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I havn't been on here for awhile either.The worst SE for me from Femera was Hot flashes,which seem to have finally subsided.I've been on it for 11 mos.Then after a few months my feet were killing me,could hardly walk and my toe nails felt like they were growing in instead of out.Couldn't sleep,or even be comfy while watching tv because of the foot pain.
Oncologist put me on Lyrica,25 mgs a month ago,and the first week or so it didn't bother me,then the more of it that got into my system,the more pain i had,only this time Charlie horses.If any of you have ever had them,you know how painful they can be.Had them in my feet and legs.Wasn't worth the pain to me,so i quit taking it,last week.Have only had the CH's maybe twice since i stopped,and they weren't as bad as before.So i know it was the lyrica.
It also gave me a very dry mouth to the point where my tongue felt like it was burned,and my legs and feet would go to sleep.Thanks but no thanks.
I think i'll try the glucosamine/chondratine.
Kathi
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