FEMARA
Comments
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Hi Ladies (and Gentlemen if applicable), This is my first post. I have early stage breast cancer, aggresive and margins less than 1 mm. I had two mastectomies (July and December 2010) and chemotherapy. The bone pain during chemo required morphine. After chemo, I started on Femara (mid-November). The hot flashes and night sweats diminished after about 4 weeks, but the bone pain has increased daily. I take glucosamine and chondroitin, Vit D, Calcium, fish oil, and just started this week on Actonel (bone builder) since I already have osteoporosis. I feel like I am 100 years old. I have the "broken feet", and pain in my long bones as well as every joint in my body. There are time when I need help to move. Note: I am not 100
only 61. I exercise, although this is becoming more difficult. I have led a healthy lifestyle, etc. My Question: Will this joint pain start to diminish in the next few months, or is this a 5-year problem? Help!0 -
Sheila-I am so sorry that you have this problem. I can only imagine. I have had my share of joint pain, but doesn't sound as if it was as intense as yours. I started Femara in Nov '09. I noticed by Oct-Nov '10 that my joint pain had diminished considerably. I am one of the people who endorse taking the little pill at night before bed--that helped my main side effect - fatigue- tremendously. You don't say, but if you take it in the AM you might want to try taking it at night and see if you are able to sleep thru some of the SE. Of course there are others who say taking it at night is worse, so who's to say. I would hope that as your body adjusts to less estrogen you will plateau on your pain.
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Thanks so much for your reply. I can hang in for a year to see how I adjust...hoping this SE will diminish. I am taking it in the am. The se lasts 24 hrs per day so I don't think changing my time will do much...however, I will try. Thank you for your advice.
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Regarding long term use of Femara...my mother has been on it for almost nine years. She started it after chemo for BC mets to the liver. Even though her prognosis was poor at the time of her DX, she's been NED for nine years. She's 88 and going strong. Yeah Femara!
I've been on Femara for 9-months and had no major SEs (maybe genetic? My mom has no SEs either.) My heart goes out to those who are suffering.
Patty
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Wow msmpatty-congrats to you & your mom & for the hope you both hold for the rest of us.
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Hi Sheila,
I am also 61. I have been on Femara since Oct.2009. I didn't have any SE until about 3 months out. The pain started in my neck then shoulders and stayed in my legs, feet, ankles, and hips. I finally had enough this Christmas when I started waking up and my fingers were locked in a curling position. I couldn't walk but a couple of blocks and to get up from the floor or couch was quite a vision. I also felt like I was 90. I got to the point that I was taking Vicodin at night, (1/2) and then had to take it during the day too. I couldn't imagine living like this for the next four years. I took a break from it for three weeks and I felt so good within 4 days. I actually started getting the pain back after three weeks....not like before but it was there, so I went back on it and I am taking it in the evening before bed. I have been doing much better with the pain issues since I switched....not sure why but I will take it. I did not tell my Onc that I went off but I go to see him in Feb and I will tell him. I have been doing lots of research on Natural Estrogen Blockers. I have all my paperwork so when I see him, he can talk to me about this. Now you had chemo and many more issues than I did. I had a lumpectomy but had to have a second surgery to clear the margins more. I did have radiation which was doable. These AI's affect woman each differently. I don't have hot flashes...just bone pain. I was to the point that I wanted to take my chances and not live like this anymore but when the pain came back after three weeks, I had my doubts if it was the meds. I am very active, not over weight and eat healthy and live a great lifestyle. Talking with all these women has been so helpful to me. My friends and family say, "you look great, I can't see that you are in pain". Well, I don't have enough time in the day to complain about the pain but as you know, it is there 24/7. Let me know how you are doing. Try to switch to P.M. Maybe it will help. I will keep you posted also. Hugs!!!!
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Hi ktmimi2 - Thank you so much for your reply. I am going to start taking my Femara at bedtime. I have "heard" that it takes up to 6 months to get rid of the Femara bone and joint pain after you stop taking it. Don't know if that is true or not. I just hope that I will be able to wear something other than running shoes in the foreseeable future. I have worked through everything with the exception of a few weeks here are there. In my job, I have to be "presentable" and my job also involves travel. Running shoes just don't cut it
. Again, thank you for your response. 0 -
Hi Sheila.....I have been on femara now for 3 years and the pain has been unbearable at times. I take it at night and it helps me to sleep I think. I tried several things and nothing worked, took a 2 month break off them last summer and felt better. I have gained a lot of weight on them and my hair has gotten so thin. As for the pain though my onco put me on cymbalta for depression and it has helped quite a bit with the pain. it constipates me but what else is new...ha ha I would check into something like that for the pain if it gets to bad. I have a horrible time with shoes now also and wear houseshoes around all day unless I am going out then it is mostly tennis shoes.....When I look back over the time though the 3 years has really gone by pretty quick....I am 61 in age........Good luck to you and hope it all works out....jude14
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Thank you, Jude14. Just knowing that there are others in the same position is very helpful. I refuse to take any more pills...seriously. I had thyroid cancer and kidney cancer 13 years ago and I am on meds for that. I feel like I could open my own pharmacy! I shall just persevere, and get used to the running shoes. Thank you for sharing your experience - very much appreciated. I am happy for you that your 3 years has gone by quickly. I assume you just have 2 more to go, or would you stay on it longer if you could? All the best - Sheila
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Shirley
I have been on Femara going on 6+ years. My onc decided since I had such a large number of node involvement (14/32) I should continue. The SEs are manageable and have been all along (the hot flashes drive me crazy) but I prefer the benefits. Hope this helps.
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nanna
Go to www.femara.com and you can get a card to get Femara for $10.00. It works. I use it now even though I have insurance because my copays cost more than the $10.00. Hope this helps
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When I went to Onc last week and had blood work done, it was determined that my iron levels were low and now I have to go for colonoscopy?? I am now on Fergon for as an iron supplement too.
Has anyone else become anemic due to femara??
Thank you.
For my sisters in north east, stay safe and warm. Snow snow snow and more snow.
Hugs,
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Hi ronqt....I have been running back and forth on anemia for some time now. I have been on femara 3 years. Was not sure if it was the femara or not. Had a coloscopy in July and it was fine so I guess it could be the femara as I have never been anemic before. I will ask the onco next week when I go in for check up......good luck with colonoscopy.....
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Hi Jude14, thank you for your answer and good luck with onc next week.
Hugs
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When my MO called about my blood work found out my body is still producing estrogen so along with the femara I will be getting a shot. When I starting femara my estrogen levels were low. I am glad I am on Femara even though it gives me joint pains and night sweats and some hot flashes. When I finish my rads, I am going to start walking at lunch time around the office. The MO said walking or some kind of exercise will help the joint pains. If it helps and I loose weight to boot I am for it.
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Sheila - I have been on Femara nearly 2 years now and like ktmimi2 my SEs didn't kick in until about 3 months when one morning I couldn't get out of bed because of the pain in my feet. Started taking glucosamine/chondroitin and fish oil tablets that day and hobbled round like a cripple for a few weeks until the pain started to settle down and now it is more of a nagging ache than sharp pain unless I overdo things. I cannot run any distance now (used to run 5 miles a day at least) but I still manage to play tennis by taking anti inflammatory/painkiller the day before, the day I play and the following day. Instead of running I have built my walking up to 1 - 2 hours a day and it doesn't cause any extra discomfort. My pain has always been below my waist in my feet, ankles, knees, hips and lower back. Fatigue has lessened over time and with increased exercise I think, but fuzzy brain is the worst SEs for me and nothing seems to ease that.
Hope you are able to push through this tough time and get your SEs under control.
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Hi Rae in NZ, Thanks for letting me know your experience. I have started taking the Femara at night to see if the SE are any better. It has only been 3 nights, so it is hard to tell at this point. I think, so far, I am sacrificing sleep in order to have less pain during the day...and it does seem to be a bit better during the day. Hobbling to the bathroom at night is a sight to behold, I am sure. I am only sleeping about 4 hours, so I'll have to sort that out. I used to walk about 5 km per day, up hills and down hills, at a fast pace. Now, because there is too much snow and ice on the ground, I am on the treadmill...almost at a crawl, but at least I am moving! I, too, have a very fuzzy brain, but that started with the chemo so I am not sure how much the Femara is contributing to that. Thanks again for sharing - it all helps very much. Take care, Sheila
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Sheila, I can so relate to the lack of sleep. I take Femara at night so I'm not drowning in sweat during the day, but must say I'm getting so tired. It seems I'm in bed by 8 at night because I just can't stay awake, but then up from 1 on. Tried going to bed later, but still wake up at 1.0
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Kira, I stay up until 11 pm, but my internal alarm goes off at 3 am. I am then awake until about 7am, at which time I can fall asleep until 10:30am. Of course, when I am working Mon-Fri, that routine just doesn't work! I'll let you know if I find a way to turn off that 3 am alarm in my head. Take care and thanks for writing!
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gee. I can't get past the warm flashes the past few nights. It is after 3 before I fall asleep, then I am up with my DD at 6:30. Thank God for my morning naps once she goes to school. I told my hubby today that we will be putting in a window unit in the bedroom this summer. lol If I can't sleep for being hot and it is 64 in the house our 100 degree summer days are going to put me over to the lunny house.
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KittryDog, I can so relate. I live in Florida so the summers are mighty hot. At least this summer I can go swimming at 1 when I wake up. 0
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Hi Femara Sisters, okay I need some advice. I have posted that I have horrible hip, leg, ankle and feet pain. Now, my fingers are curled in the morning and 24 hours a day, I feel like a truck hit me. I have a high tolerance for pain but this is crazy. I had a bit of a bug the last three days so I have not taken my dreaded Femara or supplements. I don't think I can do this anymore. Has anyone tryed taking 1/2 pill each night? Just curious. I don't go back to my Onc until Feb 18th and he will be not happy with me. There has to be another way. Can you tell, I am getting desparate???? Any advice would be great.
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ktmimi2-contact Jacee. She does a half pill I believe. Sorry you are having such a hard time.
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ktmimi2- yes, I take a 1/2 pill once a day. Like you, my s/e's were more than I could take. I still have minor joint pain, but the trigger fingers I had went away. It is much more bearable. My Onc said that's much better than going off completely. I don't know, maybe 1/2 a pill for 10 years will work better for me than a whole pill for 5 years!!! It is a pain to chop the little pills in half though!!!
The trials show estrogen suppression occurs with .5mg. So, I'm still getting more than twice that amount. And I had my estrogen level checked last month...it is very low. So, I feel good about that.
I know how desperate you are feeling...best wishes.
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Sorry MJB; I've been off line for a bit. Melatonin can be purchased at your local drugstore. My onc said not to bother with the expensive brands. I am always on the lookout for BOGO sales. Good luck, Heather
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Ok today the knee joint pain has been bad. I took a water will yesterday for high blook pressure. It is only to be used as needed, and haven't taken one in over a year. My question could it be that, or are the SE's just starting to hit me now after 3 months?
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Hello fellow Femara users, I feel like I am very late to a party, so I am sorry if I am posting something that has been discussed too much already. I started my Femara in August 2010, and thought everything was going along swimmingly, until I started waking up in the middle of the night with tingling hands about a month ago. I thought I was just sleeping funny, but I mentioned it to my onc. last week and she said it was a s/e that some women get. So I came back to these discussion boards and see that it is quite common, but the feeling seems to come and go and I can't put my (tingly) finger on what I might be doing differently on the days it hurts worse compared to the days I feel normal. Do you all remember it coming and going when it first started, and then becoming more constant? I still have 4 1/2 years to go on this, and I don't want to give up on it too easily if it is something I can figure out how to control and live with.
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Jacee,
Thanks for your info. I am going to try cutting them in half. I head that you can purchase a "pill cutter" at RiteAid or your pharmacist. I am going to try anything before calling it quits. The SE's are horrible for me...just the bone pain. I have no other SE like some women have. I would be great if I could walk for longer than 15 minutes and get in and out of my car with some bit of grace. Will it ever end? I know this is the beginning but there has to be a solution and it is my goal to find it.
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I'm sorry to those who are experiencing horrible SE's from Femara. I guess I've been one of the luckier ones. I was on it 8 months before I noticed any SE's. I've been on it for 2 years now, and it has put my cancer into "no evidence of disease". For almost a year after the SE's did start I had noticeable, but not debilitating, joint and muscle pain. I know I have some arthritis, but the Femara seemed to encourage more of it, and maybe was the cause for some. For a few months I noticed "trigger finger" in a couple of my fingers, and my hands clenched tight during the night. Also, I hobbled around the first few minutes in the morning. Getting warmed up and moving around helps a lot. It has always been worse first thing in the morning. Also, I've noticed some fatigue.
But, fortunately, the SE's have gradually decreased over the past few months. Advil and Aleve helped, and now I don't need to take them except occasionally. Maybe I'm adjusting a little, also. And, since it's keeping the cancer at bay, I probably feel I can tolerate it. Funny how things can change with a cancer diagnosis!
But, just wanted you to know that my SE's are very minimal now, and I had heard that sometimes happens with time. I hope it works that way for you gals, also. But, I know that some can't tolerate it and have to stop. There are other AI's out there that work similarly and maybe a switch will lead to fewer SE's. I hope so! I've heard some that take Femara at night, and seem to have fewer SE's and sleep better. Good luck, and hugs to my Sisters.
Lane
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Well, I finally got tired of feeling "yucky" on femara, so I cut my pills in half, too. I feel soooo much better. I'm not as tired, not as achey, and the hot flashes have lessened, but I'm not sure if that's a good thing or not??? Does that mean that the 1/2 pill isn't suppressing enough estrogen? I'm petite and WAS only 100 pounds, but since starting femara (and having ovaries out) I'm now at 110. Thanks femara. I know 110 is still not that much, but for someone who was a healthy weight at 100, just small framed, 110 is a ten percent weight gain. That's a lot!
Jacee, what trials are you referring to about the .5 mg? I would love to read them, if you can find some links to them. I just don't know what to do. I'm tired of feeling so old when I should be feeling young at 40.
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