FEMARA
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2 and 1/2 months and I have aches and pains I have never had before. They are beginning to subside (I hope)
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HI Artsee,
Sorry to hear about your hair, mine is struggling to grow although it's getting there gradually. I had my last chemo on Nov 12, 2008 and it's maybe around 1/2" long although the front is struggling and a little thin but at least I don't have to wear the caps any more. How long have you been takng Femara? When you say your hair is falling out, do you mean like when you had chemo? That's kinda scary. I know they say thinning hair can be a side effect but how much thinning do they mean. It's hard enough to deal with the first time around but at least you know then that it's only going to be temporary. I wouldn't mind losing hair in other places so much, not shaving my legs etc would be an advantage, especially in the summer.
I believe you said before you had taken other AIs, did they cause you to lose hair too? I know we should be thankful that there are meds to try prevent recurrence of the C but .....
I do hope this is only a temporary thing for you and that it stops as soon as it started.
Hensonchi, why do you hate femara so much, what SEs are you experiencing that cause you to feel this way. I started taking it Feb 24, 2009 and so far it hasn't seemed too bad. The night sweats are becoming a pain to deal with but mainly becasue of the lack of sleep. I have only 2 sleeping pills left, I only take one maybe every 2 weeks when I become so sleep deprived. My husband says to go see our family doctor and get more but I feel like I'm already taking too many pills and I would prefer to deal with this without pills. I never used to go to the doctors at all and I feel like I should be able to get back to being that way. I want my medical independence back and a real good nights sleep would be greatly appreciated. I can't believe how tired I feel when I get home from work and yet as soon as I lay down the sweats start and I'm wide awake. Last night I tried an experiment - I propped myself up in bed so that I wasn't completely horizontal and it did seem to make a difference to the sweats althouugh I still woke several times during the night.
I thought once the chemo was over this stage would be a breeze as I was extremely lucky with no real SEs during that or rads, hence I went straight back to work - now I would love to have the option of staying in bed some mornings to make up for the hours of sleep I loose during the night. Oh stop moaning!!! I should be thankful I'm around to be able to moan I guess.
Well Ladies, wishing you all a very HAPPY EASTER.
Love Gaynor
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Hi Gaynor, I've been on Femara since March 1st. My hair certainly isin't falling out like it did with chemo, but my comb after my shower was a lot more full than ever before. I just wondered myself how much fall out to expect. It did get pretty thick after it came back in after chemo and maybe this is thinning to get back to my normal amount that I always had. I never lost anything substantial from Aromasin. I think I would rather have some hair fall out than the pain I had with Aromasin.
Hope everyone had a blessed Easter. I am way too full, and think I'll go for a walk,
Artsee
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Hi,
I haven't had any hair loss. Of course I don't have any to lose as it is growing so slow from the chemo. I don't have hot flashes. I am sleeping. But I have the worst back pain that I have ever experienced in my life. A little joint pain, but the lower back pain has been horrible. I hope it goes away!
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Hi Artsee,
I've been on Femara for 4 mths now. I started to lose hair a bit in the beginning but it settled down after about 6 wks and I can see new hair growth now. I'm also having Zometa monthly.
I had a lot of side effects. Vaginal dryness was really bad, I used Replens for this because it has an applicator which helps a lot, night sweats and lots of aches and pains.
The side effects are still happening and I'm hoping they will settle in time. I remember when I started Tamoxifen 10yrs ago that the side effects went away after about 12mths.
I don't think you will go bald from the Femara.
Sandra
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Hi Everyone,
Artsee, the other week you mentioned you had stomach pains, what kind of pains were they? I had an oopherectomy almost two months ago and a few days later ended up in emerg with an impacted bowel (caused by the anaesthetic & meds). Ever since I have continued to have stomach pains. After every meal or drink I get stabbing pains varying in severity. I started the Femara straight after surgery and wonder if this is causing the problems. My husband wants me to see the doc but I tell it's probably the meds causing it and there's nothing that can be done. Some days are quite bad and feel almost like period pains as the pain extend from my chest area down to my thighs, they're kind of like period pains, but I know it can't be period pains as I don't have them anymore. Previously we blamed it on constipation due to the meds but I'm not having problems in that area anymore - is anyone else having stomach/lower intestine problems? It's probably just gas, eh?
Artsee, is the photo of you before or after chemo? Your hair looks good on there, lush & long compared to mine - I'm not up to posting photos yet. My husband and friends keeping telling me my hair looks good, and I guess any hair is better than none, although I kinda got used to not having any and not having to waste time after showering. I hope when mine eventually grows I'll be able to remember how to style it!!! Can't believe I haven't had a full head of hair since last August - how time flies.
Last week I asked when everyone considers their cancerversary to be but no-one really gave me any ideas, please advise otherwise I think I'll go with my surgery date. It's hard to believe almost a year has gone by already. This time last year I hadn't even visited my doctor and look at all that's happened since.
Well it's back to work for me ladies, hope you all had a great Easter.
Gaynor
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Have been taking femara since July 2008. No side effects until December. I had been taking Tamoxifen for 5 years and had terrible vaginal dryness the whole time for which I used Replens. When I started taking femara I seemed to get better and stopped using femara so much. Then in December 2008 I noticed a bit of blood on the replens applicator. I phoned my hospital and the consultant said it was not unusual. The vaginal dryness is back and I have also had thrush. It seems that the thrush has returned now and I have a yellow discharge. When I see blood I usually see it on the replens applicator. I have spoken to the hospital several times and they say that this is a side effect of femara. Anyone else had troubles like this. Would appreciate talking to someone.
Love Rosie1138
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Gaynor,
I celebrated my cancerversary on the one year mark of diagnosis- Im also going to celebrate April 24 when I finish my year of Herceptin- I find a lot of things to celebrate and do something for any of them I remember.
Ive been on femara since the end of January 2009- some achiness and lower back pain- I started working out with weights and a trainer last week and that seems to help- of course right now I am fighting muscle soreness since the trainer wore me out! My doc said weight training would help with the femara aches and also help build or at least maintain bone density so Im going for it since I dont want to add another med to my routine
Kristy
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I will have to try working out with weights or something as I also have a lower back pain..
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hi ladies...i'm glad to find this thread...i finished 4 rounds of AC on March 18 and started femara last night...my first concern is about the hair loss...i have a friend who has been on femara following chemo for almost a year...she is still in a wig and believes it is due to the femara...i've been really excited and looking forward to getting my hair back and am now wondering if beginning femara bald vs. beginning femara with a full head of hair makes a difference...i'd like to hear from all you ladies who started your femara with "no hair" and what the regrowth has been like...i also appreciate all the vitamin tips...i avoided many side effects of the AC because of the wealth of information on these boards!...thanks
cj
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Hi Carlajane,
I didn't start Femara completely bald, there was a small amount of "fluff" but I was definitely still wearing a scarf. I am now able to leave the house without covering my head. My hair is certainly not growing as fast as it used to and for some reason is not as dense at the front, but it has grown all the same.
I believe it's the femara plus the herceptin that is holding mine back. I saw a friend who took the same chemo as me but she didn't have herceptin and we finished on the same day, Nov 12, 2008. I bumped into her early Jan 2009 and she had a full head of hair and was ready to get it cut and coloured, my hair at that time was not existent. It's now about 1/2" long and slightly curly on top, never had curls before!
I guess we should be glad we get hair back. I just wish you could choose where to get it back and where not, so it was nice not having to shave legs etc.
Got to go, I'm at work.
Gaynor
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Hi..I believe I answered the cancervacery question somewhere, thought it was here. At any rate I consider mine from the date of diagnosis. The others don't mean much to me.
My picture was taken at the beginning of Jan. 2009. seven month after I stopped chemo. It came back quite thick. My stomach pains where in the abdomen region, so I went to my Gyne and after an internal exam assured me everything was in good shape downstairs. I think it may have come from taking Femara on an empty stomach. It says with food or none so I opted to take it in the morning and that was it. I'm not much of a breakfast eater. Well, I soon found that when I did eat with it I did not get that anymore. Gaynor your are so close to being out from chemo, that I think your system is still off from that crap and will take some time for the poison to completely be eliminated from your system.
Are you taking pills with food?
Artsee
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Hi Artsee,
Thanks for getting back to me. I do take Femara in the morning, not always with food but more often with than not. I'm like you and find eating first thing difficult. The stomach pains I get are usually after I've eaten so now I'll try work out what aggrevates it or not. I think you are probably right about the chemo thing, I had terrible constipation problems with that and also immediately after having my ovaries removed. Maybe it's my body saying enough is enough now. It's a process of elimination I guess!
I'm feeling a bit emotional right now but I think that's because I'm so tired .... these night sweats are killing me, I think maybe I got 3 hours sleep last night and they were not all together. Chemo and rads were easy in comparison, for me anyway. I guess that's because I didn't feel ill and knew what to expect and that any SEs would be short lived, whereas now I wonder if I'll ever get a good nights sleep again.
I can't decide which date to celebrate, if that's what I can call it. I'm not sure about using the diagnosis date as that still send shivers through me. Before BC I thought all cancer was a killer as I'm sure many othe rpeople think too, and the diagnosis shook me to the core. It took me a couple of days to get through that time and come to terms with things, then I pulled my socks up so to speak and got on with things. I read some really great books that really helped bring things into perspective. I do still wonder everyday is this the day it comes back but I know that should get easier with time, it's not even a year since my diagnosis.
Well that's a weight off my mind, now I should get on with my work.
Love Gaynor
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Hi Ladies
I just found your thread and wondering if I can ask a few questions. I didn't have chemo-and have just started my 2nd week of rads. I am considered to be in a low risk group and my onc said he would like me to start taking Femara now while doing the rads. Are any of you ladies low risk? Reading up on all the se i am wondering if it is worth the pain? It sounds like it makes everyday pretty miserable- and if it is taken for 5 years..wow. My onc also stated that if you are getting the se it means that the drug is working.
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Gaynor...Call your Onco and ask him or her about a drug called 'Gabapentine'. It is given for pain and my Onco also gives it for 'hotflashes'. I haven't had any and it's wonderful. No night sweats and the pain has not come back like it was on Aromasin. don't let this stuff kill you....there is help so consider it.
I know what you mean about getting knocked off your feet at DX. That is all the more reason I celebrate that date because the further it gets away in my present life, the better it is for me
Fleece...A little extra reassurance is always a good thing. As far as s/e's.. you may have a real easy time with it.I am skeptical about the no s/es and not working theory. I've heard that before but I'm not buying it.It may take longer to kick butt from one drug to another.
Artsee
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My onc says there is absolutely no truth to the "rumour" that no side effects means the AI isn't working. Just as some of us never had hot flashes during menopause, and others did, the symptoms (or lack of symptoms) due to the absence of estrogen in our bodies because of AI's is peculiar to each of us.
Personally, I think this rumour is just a sneaky way for some docs to keep us from complaining about our s/e's (with apologies to your onc, fleecewood!). JMHO, of course
Linda
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Sometimes I wonder what would happen if it was compulsory for our Medical support teams to experience some of what we have to go through. I think there was a movie a while ago about a doctor who became the patient. Things were a lot different for his patients when he got better.
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Hi Artsee,
Thanks for the info, I'll research it and talk to my onc the next time I see her.
Fleecewood, don't be afraid to try this med, I agree with Lindasa, many of the SE could be attributed to menopause if we weren't taking the meds. The pain thing I'm not finding too bad, it's just the night sweats but maybe I would have had them if menopause had have coem along in it's normal way.
I talked with my husband last night about the sweats as I'm really struggling with the lack of sleep right now and we kind of decided if the onc cannot help then maybe I'd try a spell without the AIs and see where that goes. I know Femara is considered a wonder drug for keeping the C at bay but ..... I'm just not sure. Maybe the stuff Artsee suggested will be available here in Canada and that might help.
OK got to go as work is piling up
Gaynor
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Dear all,
My psychiatrist has had me on gabapentine (Neurotin) for years for sleep. It is generally prescribed for neuropathy and pain, also possible se with Femara so I hope I lucked out there.
I was at 600 mg, but cut back to 300 because I was sleepy during the day and because it may be contributing to my feeling of losing short term memory. I just started on Femara last week. I asked her for a baseline test for cognitive because I read somewhere (probably here) that Femara can cause cognitive loss. The mini mental test is quick and easy and guess what, I am having trouble with short term memory! And it is too early to be from Femara. She will continue to test me every month.
She also has me at maximum dose of Effexor for anxiety/ depression. Thank goodness because it is the only thing that has worked for me. Before and after different as night and day. It is also recommended for se of hot flashes. So maybe I lucked out there too.
I am concerned about vaginal dryness because I have a massvie cystocele that I thought I might have corrected this winter before the BC was dx. The gyn had me on vaginal estrogen for the stretched out tissue there. So am hoping that I have a few months before I do that, since I would prefer not to have more surgery for the summer!
Anyway, so far so good. It is early but hoping for the best.
Ask for meds that can help.
Best
Mary Jo
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Ladies - Why only celebrate one date? Anyway, I will probably always mentally celebrate the day I finished chemo..... that was the toughest part so far. My next date will be in 1812 days when I will be finished with Femara (but who is counting
?)Enjoying the hair discussion - My head hair was starting to grow; now it seems to have stopped! Hope that is not a SE of Femara. My eyelashes/brows have continued to thin but I still have enough that I don't have to draw them in - good thing, my drawing skills are pathetic. I'm encouraged that many of you are still growing hair. Mine is only about 1/4 inch? Maybe I am too impatient????
Femara SEs haven't been too bad. I had shoulder pain and a few minor aches, but nothing serious. I too am working out with weights and that helped the shoulder pain. I take Femara in the evening, haven't had any stomach issues.
Fleecewood - don't assume you will have all the SEs!!!! But we need to ensure that we fight those cancer cells with all the weapons we have!
Mary L
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Been actively reading all your posts. Right now I have been having a little lower back pain but bearable. As everyone else, I am waiting on SEs of Femara. It has been 4 weeks today since last treatment.
Friday, a bunch of my teacher friends (who have not retired) are throwing me a "Coming Out of Chemo Celebration". Heading to Outback via limo and partying until.....
Had my pedicure and manicure today. It was great!
My bottom eyelashes are thinning big time. In fact, on the left side of my left eye, I have 1 bottom eyelash. At least I wear glasses and they kinda hide my eye lids. My eyebrows will be a different story.
Not sleeping all night--getting some good reading (pleasure) done.
Everyone take care!! We are so fortunate to have each other. I don't know what I would do if I didn't have this website to go to. Linda
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Linda,
My boss and my husband surprized me with a party after I'd done chemo & rads, we had a blast with all the people who had shown support & encouragement throughout the process.
I'm waiting to have a manicure till my nails get back to normal, they kinda died following chemo & more or less fell off, hands only - feet good. I lost my eyelashes & eyebrows completely but they grew back real quick in comparison to my head. Unfortunatley the leg & arm hairs grew back too which is a shame! If only we could be selective about where it grows back and where not.
Not sleeping all night? I can relate to that big time. Unfortunately I don't get to read as it would wake my husband up.
You are absolutely right about being fortunate and this website is a godsend to me. I can talk to you guys about all the sh*t etc and know you'll understand, and give me excellent advice or guidance.
Thanks everyone
Gaynor
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Hi everyone,
I have been on Femara for 1 1/2 months. So far my greatest problem is the emotional part of the relatively mild hot flashes. I feel very depressed and as if I could cry. Also have some strange repetitive thoughts like wanted to jump up, etc.
I am taking Femara 2.5 MG. Is that the standard dose? Is there a lower dose?
Thanks,
Jo Anne
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Jo Anne,
I have been on Femara roughly the same amount of time as you. Luckily I haven't felt depressed and I take the same dosage as you. I have read somewhere else on this website that some people cut the pill and take 1/2 in the morning and 1/2 at night, maybe you could try that.
For the last few days some of my fingers are feeling stilff at the base, I'm hoping it won't turn into the "trigger finger" thing I've read about as I do a lot of keyboard work, and it woud really get in the way of my day to day work. I've also noticed my hands are slightly swollen, my rings are tighter than usual.
At least I seem to have sorted out my stomach pain problem, nothing for almost a week now, yipee!!
It's gorgeous and sunny outside and set to reach 19 degrees here today which makes everything appear so much brighter and happier. Talking of which, Jo Anne, do you take Vitamin D and calcium. Vitamin D helps the absorption of the calcium but also helps people feel better in themselves, people who suffer SAD are recommended to take Vitamin D - perhaps that might help you. If things don't get better maybe you should see your onc and see if they can give you something - personally I don't like the idea of antidepressants but they could help you get over this feeling of depression til things get on an even keel?
So glad it's the weeeknd, work has been hectic and I'm looking forward to a couple of days off. Can't believe I'm saying that as all I wanted to do when I was off work was to get back, life's funny like that - you always want what you can't have.
Love to all, have a great weekend
Gaynor
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So does anyone else have lower back pain on Femara? Or is it just me?
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Hi HensonChi...I have the lower back pain. mine just started a few months ago and I have been on the femara for around a year. Was on arimidex for a few months prior to femara. I have joint aches all over but the back just started recently. Can no longer do my sit ups it hurts to bad...jude14
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Lower back pain started yesterday and is continuing. I did do some lifting on Wedsnesday that was out of the ordinary ao that might be the cause. I've been on Femara for 11 days and worry that it might be aggravating it.
I have done so little exercise since the diagnosis that I'm sure my core muscles are totally weak, which is no doubt contributing. This is motivating me to call my trainer!
Does anything help?
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Nothing is helping me yet.....I am only 2 an 1/2 months into it. I am hoping the pain will subside!
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DO YOU STAY ON FEMARA 2.5 YRS ARE 5 YRS HAS ANYONE BEEN ON IT LONGER THAN 5 YRS
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Hi all-
I have switched from Arimidex to Femara, I have been on now 3 weeks and SE;s are beginning. What do you all do for the interrupted sleep? I don't get any real sleep just in and out and lots of weird dreams. Can't take a lot of meds as my liver enzymes are up from the combo of meds (herceptin, AI, and Bisphos trial)
Any suggestions?
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