I havn't posted for a while as I was not too good on the last chemo I had, and had to refuse the 4th and last chemo. 6 weeks of radiation and no problems with that, I am now taking femara and want to know if there is anyone who has had an ok experience with this drug.

Hi Jenfurgal. I am on Femara and have been for two years. I have side effects which get me down sometimes, confusion, joint aches, hot flushes and sweats like I've never had even through menopause, and a few others. I also have Xgeva injections monthly which have some similar effects. I have spoken to my Onc and he says I can stop one or other to see which one it is but I am reluctant to as my bloods and scans show that they are working to keep the SOB contained in the bones so I am not going to rock the boat. So I suck it up and soldier on. I have been very fortunate in that sofar I have not had to have chemo. My next Onc visit is coming up at the end of the month and I will be having bloods and bone scans. Cheers Kerrie

Thanks Kerrie for your reply I have been on it for about a month and a half and have just noticed the sweats mainly at night I thought I was over them with menopause 7 years in. I have a pain in my hip my moods are not very good but like you I will just keep on with it for the end result. I had AC chemo but had to refuse the last one as I was so sick. They told me I wont be having any more tests unless I have symptoms, apart from mammogram of course. Please let me know how you go with your test results, I have not heard of the Xgeva before.

I have been on femara for two years and have learnt to manage femara on a day-to-day basis. By this I mean that no amount of wishing I didn't have muscle and joint pain, which comes and goes in intensity, some insomnia, and perspiring more than I remember I used to (I wouldn't say I have actual sweats, I'm just more perspirey) makes it better. I have found that since I have my mojo back after chemo and herceptin, which both left me very fatigued, I can easily make sure I either swim or bike-ride and walk as much as I can without my ankles becoming painful, on an every day basis. I use 2000mg of fish oil and glucosomine and chondroitin every day. No idea if these are effective for femara side effects in reality but they are heplful for my arthritic ankles, and the fish oil is helpful in maintaining good cholesterol. I take two panadol rapid every night (oncologists suggestion) and just keep moving. I am grateful that I feel mentally and physically well these days and can thank the researchers who discovered femara and its benefits. I would really LOVE those researchers to find a way around the myriad side effects of AIs and also tamoxifen. Maybe some day... So, I wouldn't ever say I have had an OK experience with femara, but it's good enough. One other thing - thinking of having to take it for another three years doesn't help me. I will just take one tomorrow morning, then the next day, the next, the next, and so on. I hope you can manage on it. Keep us posted. All the best.

pressed too may buttons. sorry.

Femara | BCNA Online Network

14 Replies

jenfurgal
Member
12 years ago
Have been taking it for about 5 and a half months so far no side effects apart from a bit of stiffness and a very dry scalp. Will be having my first check up mammogram at the end of this month so has been twelve months since diagnosis in June 2013

. Also my first symptom of breast cancer was a deep tingling in the breast and have since had a couple of friends diagnosed who also experienced this tingling sensation I was wondering how many other people have had this?
jenfurgal
Member
12 years ago
Have been taking it for about 5 and a half months so far no side effects apart from a bit of stiffness and a very dry scalp. Will be having my first check up mammogram at the end of this month so has been twelve months since diagnosis in June 2013

. Also my first symptom of breast cancer was a deep tingling in the breast and have since had a couple of friends diagnosed who also experienced this tingling sensation I was wondering how many other people have had this?
Mozzee
Member
12 years ago
Hi Jenfurgal Well, I have had my scans and bloods tests and the good news is that there has not been any significant change in the last 12 months. Woohoo!! I have to see my Onc in April to discuss whether he will change my meds or not. As I have said before, I'm reluctant to change when everything is stable. More good news.....I'm feeling more confident that I will make it to Florida in October to take part in Dragons Abreast International Festival. Because I can't get travel insurance (preexisiting) wasn't sure if I should take the change but my Onc says I should be fine. Hope things are good for you. Cheers Kerrie
jenfurgal
Member
12 years ago

thanks everyone for sharing your experiences with me. It is so good that we have a site that we can ask each other about things. Thanks again laidies and all the best to you all.
jenfurgal
Member
12 years ago

thanks everyone for sharing your experiences with me. It is so good that we have a site that we can ask each other about things. Thanks again laidies and all the best to you all.
Chris
Member
12 years ago
Hi, I have been on Femara for 2.5 years, and the side effects are far less intense than at the beginning. The bone aches and stiffness are gone, but I still keep taking fish oil, but only 1 a day now, instead of 6 - 7 a day. I sweat badly and have trouble falling asleep, but I was menopausal when I started the tabs, and was already experiencing the hot flushes badly and sleep issues. My side effects now are minimal, and, with hot flushes mild compared to menopause, when I was having days that would include hot flushes every 8 to 10 minutes. Hope it all settles down, as it is a drug of choice for post menopausal women with hormone positive cancer.
dianne_n
Member
12 years ago
Hi, Femara seems to cause joint pain, night sweats, I also seem to have problems with my arms and legs at night where they jerk and spasm. Not all the time and not every night. Sleeping problems often occur when on Femara too.. I think the menopausal symptoms bother me the most. Sweating and having to use a fan at night, sweating even when it's cooler. Another four years but better than the chemo and radiation. Dianne
dianne_n
Member
12 years ago
Hi, Femara seems to cause joint pain, night sweats, I also seem to have problems with my arms and legs at night where they jerk and spasm. Not all the time and not every night. Sleeping problems often occur when on Femara too.. I think the menopausal symptoms bother me the most. Sweating and having to use a fan at night, sweating even when it's cooler. Another four years but better than the chemo and radiation. Dianne
Mich_x
Member
12 years ago
Hey Jenfurgal

I have been on Femara 14months now. I was on Arimidex for one month which I could not tolerate in any way. It was totally unbearable.

My onc let me go off Femara for 6 weeks the middle of last year and then back on it for six weeks and then report back to him. I was hoping to report back and blame all my aches and pains on Femara but I was unable to do that unfortunately. I was diagnosed with fibromyalia prior to my BC diagnosis so I have to put some of the aches and pains down to that and some to Femara. I now also learn to live with my aches and pains on a daily basis. I am not sure what my stiffness and feeling like a 90 year old stems from - I think Femara but not sure. I still have fatigue but that may be from recent ongoing procedures. I have brain drain which I blame chemo and ongoing anaesthetics. I have ongoing up and down feelings which I could blame on lots of things.

I am so looking forward to getting back in to some exercise which I think will help with my mood, my mojo, my aches and pains, my fatigue and so on. I was an extremely active person prior to BC.......so one day.

I am on Lyrica for pain. I have very recently been put on low dose Clonodine for the most embarrassing dripping and very unlady like sweating. It seems to be helping. I remember someone tried me on Clonodine early last year but on a much higher dose straight off and I was a total zombie so went off it quick smart but I am doing it slowly this time.

I can say Femara and I have learnt to live together for better or worse so death doesn't do us apart. What can you do except try whatever you can to keep yourself alive and away from the dispicable BC.

I do know there is a lot worse things that give you a lot worse side effects and for me it was "my particular experiece" with chemo.

Point to be taken is that every single persons experience with a drug etc is totally totally different and until you give it a go you will never ever know luvly.

Good luck, wishing you all the best. Mich xoxoxoxo
bmc
Member
12 years ago
pressed too may buttons. sorry.