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FEMARA

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  • dlb823
    dlb823 Member Posts: 2,701
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    Hi, Ladies ~ I've been lurking on this thread for a couple of weeks, knowing (dreading) that an A/I was in my near future.  I finally saw my onc today, and left with an RX for Femara (his choice), so we'll see how it goes.  According to him, very few of his patients have any problems with it... but I think I've seen that movie before! 

    Anyway, I wanted to share something an acquaintance who recently started on Femara told me.  She said her onc told her that it stays in your system for 3 days, so based on that, because she's been having difficulty sleeping (her first major SE), she cut back to taking it every other day.  Her onc told her he'd never heard of doing it that way, but he didn't object.  

    Based on what I'd read here, and because I'm small and very sensitive to meds, I asked my onc about the "one size fits all" dosing. I didn't get a very satisfying explanation -- just a comment that the drug companies only make it in one dose -- but he did say he supposed I could take 1/2 a dose if I wanted to, although he's never heard of it being done like that.  When I told him I'd heard it stays in your system 3 days and that someone I knew was taking it every other day, he sort of brushed it off  -- but he didn't put it down or caution me that it wasn't a good idea or wouldn't be effective. 

    I'm not sure yet what I'm going to do, but I'm thinking of at least starting out with one of those two approaches, rather than a full dose.  Does anyone have any additional insight into doing it this way (1/2 dose or every other day) to start?      Deanna

  • erika-canada
    erika-canada Member Posts: 5
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    Hi Ladies:

    I've been on Femora since May/07. I had no SE's for about the first 3 months; except insomnia...which still is the worst. I have joint aches but not everyday and not the same amount of severity. I'm on many meds. so haven't taken any for these pains.

    How many others have problems with severe hair thinning? Extreme fatigue (feel the same as after treatment). Intimacy/sex is extremely painful...and the biggest problem re: my relationship for 12 years.

    Obviously, when Estrogen is blocked, the "Mood" will not be there...however I did not expect this. What I didn't expect is the excruciating pain, and going to the bathroom for 4-5 days after burns like fire...absolutely horrid. I've tried Replens, Vaseline, K-Y gel and many others, with no success.

    I would very much appreciate your input, experience or opinions, I'm sure all would help.  My husband is very loving and understanding, but lets face it gals....if things don't improve; I can see myself loosing in that arena as well.

    Bless you all for all your kindness and help you've given me since April/06. Too much for words to express and I'm becoming all misty....(which I also think is from Femora), the mood swings!!!

    Don't get me wrong I will stay on Femora as long as I can. Personal opinion...best Drug out there; especially with IBC.

    Sorry, for babbling on and on, I apologize.

    FrownErika

  • Reneepals
    Reneepals Member Posts: 64
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    Deanna,

    Me personally I would not mess with the dosage. It just isn't a good idea. To me it seems like Russian roulette. But that is just my humble opinion. Erika what is severe? How long did it take? I have been on it for about 4 months. I have notice some thinning. I had thick curly hair and now it is straight. But I was on tomoxifen for 2 yrs, so that could have helped. I think Femara is one of the better drugs, with everything in breast cancer there is always a trade off, nothing is easy or fair.

  • crazy4carrots
    crazy4carrots Member Posts: 624
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    I think we should all be asking our oncs about the "one size fits all" theory!  I wonder if any clinical trials have been conducted regarding this.  And I'm quite sure there are blood tests to determine whether or not 1 pill/day or 1 pill every other day are equally effective in blocking estrogen.

  • PugMum
    PugMum Member Posts: 18
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    Erika,

    I know you said you're on many meds. Is an anti-anxiety one of them? If not, it may help. Yeah, I've kind of felt numb from the neck down but I'm forcing myself to get interested in sex again. Actually, the menopause has helped in the sense that I don't have to deal with birth control any more!  And, I'm a tad afraid my dh will find some co-workers who would be more than accomodating in that area.I'd be a little concerned about the burning urine. Have you talked to your oncologist and/or gyno? Vaginal dryness can definitely cause bladder problems so it might be something to investigate.

    Now, my question to all of you. How long does the joint pain last? All 5 years? I'm having it so bad in my right thumb I can barely write. Holding stuff is near-impossible. And trying to straighten my thumb in the morning is excruciatingly painful. Now it's starting to radiate up my arm. I'm taking ibuprofen which helps for a limited time, but I don't want to take too much and mess up my stomach. What products do you all take that help?

    Kathy

  • Reneepals
    Reneepals Member Posts: 64
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    Diclofenal is an anti inflammatory and is good for "joint" pain

  • artsee
    artsee Member Posts: 701
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    I've been on Aromasin before Femara and I had the hand pain so bad I couldn't spray a hair spray can. I'm a hairdresser so that was nor cool.I had and still have 'tennis elbow', which is sometimes better some days than others.

    I've been on Femara for three weeks and I am slowly getting back pain. I've had low back pain on and off all my life but this is different. The ache is more in the middle of the back. So far that's about it but  realize it's still early.

    I found that getting ibuprofen in your system and keeping it there helped the pain a lot.

    Artsee

  • artsee
    artsee Member Posts: 701
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    bump

  • NatsFan
    NatsFan Member Posts: 1,927
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    Erika - get to your gyn ASAP.  There are things that can be done, from an eString to a FemRing, or even a limited dose of Estrace.  Get your onc's approval first, but most oncs seem not to have a problem with an eString or a FemRing.  I finally got over my shyness about talking about these things with my gyn, and she was wonderful.  I went on a limited half-dose of Estrace for 3 weeks - it's estrogen so it can't be used long term, but with my onc's approval I used it for strictly limited term of 3 weeks to give the tissues a bit more elasticity and get them a bit plumped up - basically a "jump start" to getting those tissues back into shape.  It was miraculous the difference it made.

  • erika-canada
    erika-canada Member Posts: 5
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    Hi NatsFan:

    Thank you so much for your input. I did discuss it with my oncologist, and she said seeing it was IBC, she wouldn't touch anything even closely related to Estrogen. She suggested trying different non-estrogen products and a lot of patience Frown!! Guess I'll stick with that, really don't know what to do. She did well with my other treatments and I really trust and like her.

    Thanks for your suggestions, greatly appreciated.

    Erika

  • Lories
    Lories Member Posts: 23
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    Hi all, Pugmom - I have been on Femara just over 2 weeks, feeling some stiffness here and there, but this morning it hit BIG time.  Both my right thumb and my right big toe.  I could hardly walk or hold anything in my hand.  I gulped down glucosamine and tylenol for arthritis and lots of water and tried to work it out.  It is better now at the end of the day, but here is my question:

    has anyone had the pain increase to other locations or do you think I may be honored (and blessed) to just keep these two areas of pain?  any experiences here? 

    thanks, Lori

  • HensonChi
    HensonChi Member Posts: 68
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    My pains are in my lower back and shoulders.  I am just miserable.  it didn't kick in until about 4 weeks in.

  • Monty
    Monty Member Posts: 146
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    Hi All,

     This is my first posting, although I've been checking out the website since starting on Femara approx 3 weeks ago.  I was diagnosed last May, had surgery in June followed by the chemo, rads and ongoing Herceptin.  I started taking Tamoxifen in Dec while I waited for my ovaries to be removed in Feb 2009.  I didn't like the idea of the possible tamoxifen side effects so the surgery was elective to open up other med possibilities.  So far I haven't suffered too badly with the Femara SE but I realize it's early days.  I am finding that I am exhausted by early evening since starting Femara, I didn't have any exhaustion with the chemo or rads so I'm surprised that it's happening now, although I was warned.  My onc is amazing and very truthful about explaining possible side effects, she holds nothing back.  I have also experienced mild ache & pains by the evening and wake a little stiff in the morning but that wears off after a shower.  I have also noticed fuzziness in the morning but I wonder if that's because I'm tired as the night sweats play there part in waking me during the night.  I said to my husband the other night that I can't remember the last time I had a full nights sleep without taking a sleeping pill.  I work full time so I can't take anything during the week but I do take a sleeping pill maybe once every two weeks on a weekend to try and catch up with some much needed sleep.  This week was my first experience of having the Herceptin infusion while on Femara and I don't know if this is why I'm feeling more exhausted than usual, maybe someone out there has had a similiar experience?  It's so interesting reading all about everyone elses experiences, it kind of puts things into perspective.  I'm not one for attending support groups so it's nice to be able to share experiences and get some ideas of how to deal with things.  Thanks to everyone out there for sharing your knowledge and experience!

  • artsee
    artsee Member Posts: 701
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    Gaynorl...I'm about 99% sure that the Herceptin is playing a part in your exhaustion. I don't seem to have it other than the usual tiredness at the end of the evening,

    Lorie...When I was on Aromasin I usually had two places of pain from the drug. Right hand and left elbow. Now on Femara I have aching in my upper back, and the elbow continues. It has been tolerable because my Onco prescribed 'Gabapentine for pain.It's not a pain killer medication. It also decreases hot flashes which I found out on the WEB while doing some research. That is wonderful and I recommend it. Ask your Onco's about it. I know, it's not fun taking another drug but when it cuts down the pain and hot flashes I'm all ears.

    Keep sharing...Artsee

  • Monty
    Monty Member Posts: 146
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    HI Artsee

    Thanks for that.  I'm thinking about taking the Femara at night instead of morning as I notice I am tired again within 30 mins of taking it.  I also noticed for the first time a warning my pharmicist put on the package warning that Femara can cause drowsiness, go figure! A friend also told me that taking calcium supplements can aid sleep if taken at night, perhaps with th level we take it aids sleep atany time of the day?  I have noticed each day that the aches are building up, not to a level that I can't tolerate them but just a little more each day. Chemo was a lot easier to take than these meds it seems but I'd rather avoid the C coming back so I know I'll persevere, it's early days still. What test have you guys had since finishing chemo, I have the usual muga scan every 3 months but I haven't had a blood test since finishing chemo, finally this week my chemo nurse who giives me the Herceptin ordered blood work as she was surprised that the onc hadn't. She also asked how my last CT scan went but I haven't had one, ever.  Maybe you guys can give me some advice so I can ask in a couple of weeks when I see the radiation onc for a follow up.

     Talk to you all soon

    Gaynor

  • artsee
    artsee Member Posts: 701
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    Hi Gaynor...I have gotten a blood test EVERY 4 weeks since the first of Nov. I'm not happy about getting pocked that often and then returning to see the Onco for the test results. This started because my liver enzymes started to elevate. So he's keeping on top of things. It turned out the one drug I was on was causing it. After 15 years on the stuff mind you.

    I had a CT scan right after New Years of the abdomen. I think he wanted t make sure cancer wasn't in the liver. I don't think he would have ordered it hadn't I started to have a problem. Looking at your Dx I'm surprised he hasn't ordered a scan. Node involvement should be checked regularly. I'd asked when you go to see your Onco. Other than this I've had no tests. I've wondered about it but have to have faith in my Dr.

    Blessings, Artsee

  • MsKarin
    MsKarin Member Posts: 105
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    HAND JOINT PAIN

    I have been taking Femara for 5 months now. I am now fine with it and just stiff upon awaking and getting up after sitting for a long time. No hot flashes because I am taking 5mg of Lexapro a day. On days I forget hot flashes will remind me. Occasionally I can't fall asleep and will then and only then take an Ambien. At first I ached real bad and thought I had arthritis in my hands. Felt like when doing chemo and I had Neuropathy and Hand Foot syndrome. At that time the onco had me taking B-Complex to combat it. It worked. After finishing chemo I stopped the B-Complex; so at time of starting Femara I wasn't taking it. After not liking the pain I was experiencing in my hands and sometimes knees I decided to start taking B-Complex again. Now I don't know if that's what did it for me but you might want to try it. Pharmacist told me it is one of the vitamins that your body can eliminate what it doesn't use and there is no build up. Just a thought I thought I'd pass along for those of you having problems. It just might work for you too.

  • crazy4carrots
    crazy4carrots Member Posts: 624
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    Ms Karin -- I'd like to introduce your hands to my hands!  Funny thing is -- some days they feel fine, while other days they hurt like the dickens.  I'm also taking B-Complex; tried Glucosamine but it gave me dreadful heartburn.  Guess we learn to live with it.  Luckily, I've never had a hot flash -- either before or after bc -- just a few minor "warm flashes"....Embarassed

    Linda

  • nanna
    nanna Member Posts: 138
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    WELL I HAVE BEEN TAKING FEMARA  FOR 3 MONTHS AND S E ARE NOT TO BAD UNTILL TODAY. WHEN I WOULD PEE IT WOULD HAVE BLOOD IN IT. ANY BODY ELSE HAVING THIS PROBLEM.  OR COULD IT BE SOMETHING ELSE CAUSING THIS

  • TenderIsOurMight
    TenderIsOurMight Member Posts: 55
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    Hey Nanna,

    Yes, that sounds like something else than the Femara. Most likely a bladder infection. Are you peeing a lot, with some discomfort. Are you sure it's blood in the urine and not from elsewhere?

    Sounds like you might want to call your doctor and let them guide you.

    Best to you,

    Tender 

  • TenderIsOurMight
    TenderIsOurMight Member Posts: 55
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     Ms. Karin and others,

    Your comment "No hot flashes because I am taking 5mg of Lexapro a day." caught my attention.

    Anyone know if Lexapro is known to decrease hot flashes. Maybe I"m confused tonight, as I do recall that Effexor is felt too.

    Any update from anyone on these SSRI's (lexapro, zoloft, celexa, etc) and interaction with the AI's like arimidex and femara. Last time I checked femara the metabolic enzymes did not cross react, implying to me no interaction. Guess it's time for me to study up on this again.

    Thanks for posting this thread.

    Tender 

  • Monty
    Monty Member Posts: 146
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    Hi Artsee,

     Thanks for sharing your experience, it's  really helpful having everyone elses ideas to think about.  I can't believe how tired I am.  Yesterday I didn't wake till 10am and I was back in bed for a NAP by 2:30, my husband finally woke me at 5pm.  Last night I tried taking the Femara at night and I haven't been as bad so far today so I'll stick to this routine for a few days and see how it works. I'm not usually a tired person but the Femara knocks me out, I feel tired and fuzzy all day and I don't like that feeling.  I never suffered with any SEs really through either the chemo FEC-D or the radiation, but maybe it's my body saying enough is enough for a while.  I don't see my onc till may so I guess I'll wait till then and see what she says about scans. I think I have to go for mammograms next month as it'll be a year since having one, do they do mammograms on the mastectomy side, someone else told me they do but I can't see how, I'm hoping they'll do ultrasounds instead for pain reasons but also because my cancer didn't show on the original mammogram even though it was big enough to feel. Guess it's kinda lost my faith in mammograms for now.

     Well I'd best go now as I need the bathroom, we are becoming quite familiar with each other these days, the urge to go is much more frequent for some reason?! Another SE I guess.  Haven't had any aches or pains today though so that's a positive, not that they're bad anyway.

  • artsee
    artsee Member Posts: 701
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    I had my first mammo on the cancer side at 6 month and both sides at 12 month. It was done with a digital machine. For you info, it did not hurt one bit. I was worried but ..nothing to fear.

    Artsee

  • Lories
    Lories Member Posts: 23
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    Hi Artsee, thanks for the info.  I will do some checking on Gabapentine - my pain has lessened but man was i scared and depressed on Thursday when I woke up and could not work my hand. 

    I am also taking a whole regiman of vitamins, B included, plus glucosamine, plus I grabbed some Biotin just in case my loss of hormones start with the hair loss. I ended up finding a lemon flavored Biotin lozenge - I figured I was taking so much other crap that would be one way to distinguish if I took it.  ha ha, I am only 52 but have a terrible memory. 

    I also am taking 10mg of melatonin at bedtime.  :)))))

    cheers all.

  • artsee
    artsee Member Posts: 701
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    lori...Did you start with 10mg of melatonin or did you increase to that ? I take 3mg and I'm tempted to take 2 of them. Woke up last night at 4 am. That's just not enough.

    I take a bunch of vitamins as well, but just recently nixed the Omega 3 because one of the ingredients in it was soy.

  • Monty
    Monty Member Posts: 146
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    Hi Artsee,

    Thanks for that, it has but some of my worries to rest.  I'm sure it can't be that bad but just the thought..... You'd think we'd fear nothing after the barrage of tests, treatments etc that we've been through.  The tiredness seems to have abated over the last couple of days, I 'm beginning to wonder if the mix of herceptin, femara plus antibiotics for an infection I had in the surgical wounds all compounded.  Since I finished the antibiotics at the weekend I am not as tired.  You guys all mentioned lots of different remedies to try but a number of them are not available in Canada, at least not over the counter.  I'll try just to get on with the Femara plus Vitamin D and calcium and see how it goes.  So far the pain factor hasn't really come into play, I'm hoping it stays that way as a lot of you guys seem to have real problems with it, hopefully it's not something that grows over time as I don't really want to take any more meds than I already take.  Before my diagnosis I didn't take any kind of meds and I would prefer to keep it to the bare minimum if possible, I'm told have a very high pain tolerance so I'm hoping this will help me.  How long did it take before you all started having problems with the aches, pains and joint problems, I've only been taking this stuff for 4 weeks now?

     Have a great day!

    Gaynor

  • Buzzby48
    Buzzby48 Member Posts: 4
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    I'm taking Arimidex since August 2008 and have experienced joint pain in my hips and mid to lower back. It feels like sciatic pain and was uncomfortable most of the time. I also have been treated for heart problems in the past and recently I started taking D-Ribose, which is supposed to help fuel the muscles - the heart being one. I don't know if it's just me, but I realized my hip pain, since taking Ribose, has lessened considerably. I don't know if it's helping my heart, but it definitely has helped my joint pain. I don't want to get anyone's hopes up, but I thought I'd pass it along. Maybe it might help others.   

  • dlb823
    dlb823 Member Posts: 2,701
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    Buzzby ~  Your post about D-Ribose sparked my interest.  I wasn't familiar with it, so just looked it up.  At first, I was pleased to see that it's a natural substance, and not a drug.  But the articles I quickly perused describe it as a naturally occuring sugar, which confused me, since I'm under the impression that sugar feeds cancer cells.  So I'm wondering, was it recommended to you by a heart doctor or oncologist or nutritionist?   Do you know anything else about how it works that you might share with us?    Deanna

  • artsee
    artsee Member Posts: 701
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    Gaynor...I've been on Femara for about a moth now and I don't have much in the line of s/es except for mid back pain. It's annoying because there's nothing to get rid of it. Aromasin had me in a lot of joint pain and after 6 month i said good bye to that. I also have stomach pains and i think i should take it with food in the morning. I just am not hungry for breakfast. Have any of you gotten stomach aches from this stuff?

    Buzzby..how did you get rid of your mid back annoyance? thanks for sharing all your maladies nd cures.

    artsee

  • Lories
    Lories Member Posts: 23
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    Hi artsee, somewhere I read about the 10 mg so that is what I take, two 5's.

    I am happy to report that my thumb pain has died down, phew I thought I was in for ig big time, once in ahwile is manageable.  L