FEMARA

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

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!!!!

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

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.

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,

Hi Jude14, thank you for your answer and good luck with onc next week.

Hugs

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. 

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.

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.

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.

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?

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.

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.

Weety and Jacee,

I have just cut mine in half too!!!! It has only been a couple of days but I needed to do something. The pain was too much for me and I have only been on Femara for 16 months. Please keep me posted on your levels and what your Onc's have to say. I go Feb. 18th and I will report in.