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FEMARA

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Comments

  • KristyAnn
    KristyAnn Member Posts: 131

    PSAVAST,

    I havent had a hard time with femara- mild achniess early on but walking helps and I stay on top of the vitamins and calcium supplements. Fatigue is fairly common and mine is very minor- Im still working fulltime and busy as heck with a large family and a lot of activity. Most of us with fewer side effects just dont post as much it seems.

    Kristy

  • eph3_12
    eph3_12 Member Posts: 2,704

    I am having substanial stiffness & achiness, but I too, walk 2-3 miles per day, work full-time and chauffer an under 16 teenager to tons of events, make dinners, etc. everyday.  The fatigue issue went away for me when I started the pill at night.  I know I keep preaching about that, but I am a firm believer!!! You can do it psavast!

  • mbtlcsw01
    mbtlcsw01 Member Posts: 250
    I have been on femara since 4/09.  Until 2/2010, I was able to manage the joint pain pretty well.  I developed significant arthritis in my left knee.  Had a bad flare up and then it subsided.  It came back in Arpil to the point that I almost couldn't walk.  I work full time and not as active as I could be.  I'm seeing a rheumatologist Thursday.  I will NOT get off AL's because I would rather deal with this than face cancer again.  My concern is how this is affecting my bones/joints.  Will it be permanent?  I guess I'll find out soon.  By the way, during my reconstruction surgeries, I had fat lipoed out from under my new breasts to my belly button.  I won't ever be fat there again, cause there is no fat cellsKiss
  • mbtlcsw01
    mbtlcsw01 Member Posts: 250
    Yep, I had bone density test done back in 8/08 prior to diagnosis.  Had another one done few weeks ago.  Report from the nurse said that it was still within normal limits.  I want to get a copy of both reports for comparison.  Bonnie, I still have LOTS of fat cells elsewhereUndecided  I'm just concerned about my knee.  It swells up, gets real hot and is almost impossible to walk on when I'm in a flare up.
  • Harley44
    Harley44 Member Posts: 2,126

    psavast

    I have been taking Femara since Jan 1st, and haven't had too much trouble with it.  I have some extra aches and pains, joints ache when I am sitting still or while sleeping in bed all night; when I wake up, I ache and feel stiff, kinda like the tin man !!!    But, so far, for me, it IS doable.  

    Good luck with it....

    Harley

  • hbcheryl
    hbcheryl Member Posts: 4,164

    Psavast I've been on Femara for 19 months with very few side effects.  In the winter I had a some arthritis pain in my wrists and thumb and my joints get a bit stiff but I exercise religiously and I feel that really helps.  I would say the worst for me are the hot flashes but I've had them for 10 years so I dress in layers and sleep with a fan. 

  • Monty
    Monty Member Posts: 146

    Hi Ladies,

    I got the results of my bone scan last week and all was good however the bone density scan shows a significant decrease and now the onc wants me to have twice yearly infusions of zometa - is anyone else taking this stuff, and if so, what side effects if any are they having?  I have researched this drug a bit and I don't like the idea of some of the problems it can cause but I trust my onc and feel I should at least give this a try, I'd just prefer to know what to expect.  I thought about the idea of asking to stop Femara and AIs in general for a while and see if that would halt the osteopenia but I know that means risking the BC coming back so I don't suppose that is an option.  I am just getting a bit fed up of taking these drugs knowing that they cause other underlying problems that effect quality of life.  Please if anyone else is taking zometa (zoledronic acid) can you let me know how it is affecting you and what to expect when I have the infusion.

    Best wishes to everyone,

    Gaynor

  • aprilgirl1
    aprilgirl1 Member Posts: 803

    Gaynor - my onc. really loves zometa - and most of my "cancer" friends where I live get the infusion twice a year.  My insurance company denied it for me and my bone density according to my onc. is that of a 30 year old (I am 46), so can't get it for ostepenia.

    When we first discussed it we talked about the side effects.  She (at a large NCI center) said that the scary side effect, jaw necrosis - is very rare, and she has never seen it in a patient with twice a year infusions - some patients get it monthly.  I also talked to my dentist about it.

    I THINK there is a zometa thread.  My friends say that the first infusion they had some pain and some had a fever the next day, but subsequent infusions had no issues.

    The studies on zometa and how it inhibits mets is pretty great from what I have read.  I am hoping it becomes standard of care soon so my insurance company with approve it.

    I hear you  on being fed up with the drugs - with the supplements, femara and gabapentin that I take I have a full on pill box that I associated with GERIATRIC patients, not 44 year olds.  However, we have to do what it takes to maintain our health! 

  • crazy4carrots
    crazy4carrots Member Posts: 624

    Mary - Re your tummytuck:  It did get rid of the current fat cells, but unfortunately you may develop more!  A good friend had a tummytuck several years ago; she thought she could go back to eating normally, and she did, and she simply developed more belly fat.

    Femara is such a b**ch for contributing to the dreaded belly fat.  It's as though our bodies are trying to preserve that "special" area for fat reserves in case we face starvation......Frown

  • infohh
    infohh Member Posts: 22

    Gaynor

    I took Zometa twice so far.

    I prepared for it by drinking lots of water two day before and three after.  I had a dental checkup before.  Not bad SE just felt a chill a couple of days later, and some facial bone discomfort within the first week.  My spin was going into osteoporosis but when I checked befor the second infusion it was better. 

    I am 50 now. 

    Good luck.

    HH

  • nursecal
    nursecal Member Posts: 34

    With my limited knowledge, Femara is usually given for post-menopausal women where Tamoxifen is for pre.....Each drug is believed to be given for 5 year spans.  My onc has kept me on Femara after my 5th year due to the number of nodes I had involved.  I would discuss thoroughly with your mother's doctor and determine what will be the best quality of life for her.  Good luck

  • nursecal
    nursecal Member Posts: 34

    psavast......have been on Femara for going on 6 years now.  It did cause trigger fingers....the osteo is the main SE.........bone and joint pain are part of that.  I never really had such bad SEs that I ever considered not taking it.  I believe it has helped in saving my life.  14/32 nodes were positive, so whatever I can do to prevent recurrence I will do.  I read in a response earlier that taking it at night has helped with sleep problems.  I was waking up around 3:00 am prior to my diagnosis due to hot flashes (those do increase for a while on Femara, at least for me), so I can't say it is the Famara that wakes me up now.  My waist size has increased recently but don't know if that isn't just due to estrogen depletion which would have happened anyway.  I simply feel that you should do what you feel best doing...........all of this is such a personal choice.  You never know until you try.

  • Monty
    Monty Member Posts: 146

    Hi Ladies,

    Thanks for your responses, it always helps to talk to people here who have experience with these drugs, the oncs can be great but they haven't personally experienced any of this stuff.  I now feel confident in going ahead with this treatment. 

    I did see my dentist already and they are checking up on any information they can find out.  So far my teeth have not caused any problems in my life although the dental hygienist does see some bone loss in my jaw but nothing significant.  I have not received the date for my first round of Zometa yet, I go on vacation in a couple of weeks so hopefully it won't be till after that, just in case I do suffer any of the bad side effects other ladies have mentioned.

    Next biggy is the yearly mammogram and ultra sound coming up any time soon, just waiting for the appointment, last year there was something suspicious that they want to keep an eye on, hence I still see the onc every three months rather than having gone to 6 months, oh well at least they are looking after me.

    I do have major sleep problems so I am going to try taking the Femara at night and see if that makes any difference for me, sleeping aids haven't worked!  I bought melatonin as I had read about it on one of the threads while doing chemo but my chemo nurse said that it wasn't a good idea to take it, can't remember the reason why though - guess that's chemo/herceptin/femara brain for you.

    Have a great day everyone,

    Gaynor

  • KristyAnn
    KristyAnn Member Posts: 131

    I switched my Femara to evening this week- I havent had terrible SEs but have had some foot cramps at night (wake up a couple of times with a cramp)- waiting to see if this changes. I took it in the morning just because it was easier to remember with my other med (Im in a neratinib trial)- but is the cramping will stop, I will switch to evening!

    Kristy

  • nanna
    nanna Member Posts: 138

    I started taking vitiamin B-12  sublingual high potency 2500 mcg for about 2 wks. I seem to have more energy.  I haven't told my onc yet will tell her next week when i see her hope she will say it is ok to take has anyone else taken this?

  • activern
    activern Member Posts: 111
    I have been on Femara since November 2009 and what a nightmare!  I stopped about a week ago when my symptoms took me to the ER.  My right knee flared up and now I am walking like a 100 year old woman.  The ER doc sent me back to my oncologist for an MRI that I will have this week. I am now curled up in bed with continuous pain despite 800 mg Ibuprofen 1-2 times daily; Glucosamine-Chondroitin; Calcium; and some other stuff.  I cannot move in the morning most times but force myself to get out of bed.  A/C was bad but I think this is worse.  I see my onc after MRI on June 7.
  • Monty
    Monty Member Posts: 146

    Hi Everyone,

     Well after agonizing as to whether or not to do the Zometa infusions and deciding to go for it I have now been told by our insurance carrier that they will not cover this drug.  Apparently in Canada it is not been adopted as a  "standard of care" yet, although my onc believes it will be in the future as there has been very promising data coming through.  So it seems I worried myself for nothing, oh well.  Not sure what it will mean now for my bone loss issues, my onc is going to get someone to give me a call so we can discuss the way forward. I know the drug is expensive and I'm not sure if the pharmaceutical company offer any assistance or not.  Perhaps this is God's way of saying that this drug is not the right option for me eh?  Not that I'm a very religous person anyway but ...... everything happens for a reason right?  Guess I'll have to start doing some research to discover the alternatives.

    Hope you all are having a good day, the sun is shining outside and I so wish I was out there and not locked in this office.

    Gaynor

  • nanna
    nanna Member Posts: 138

    Has anyone taken zometa for bone loss my onc wants me to take it twice year.what does it do to your teeth. Why do you have seen dentist i wear dentures should i  see a dentist before.
    Diagnosis: 6/27/2008, ILC, 1cm, Stage I, Grade 1, 0/1 nodes, HER2+

  • infohh
    infohh Member Posts: 22

    Hi

    I took two infusions of Z for bone loss.  You need to see a dentist because you should not be doing any major dental work close to the time you take the Z infusion.  Prepare for the infusion by drinking a lot of water on the day of the infussion and the  three following days. Good Luck

    HH

  • weety
    weety Member Posts: 378

    Okay, so I haven't read through all 38 pages of this thread yet (I only got through page 5 so far) but I'm wondering if there is anyone out here who is taking femara and has a tumor that is only "weakly" positive for estrogen receptors????  I had a TAH/BSO due to some complex atypical ovarian cysts, so I'm no longer premenopausal.  My estrogen level came in (before beginning femara) at "less than 12".  I guess my question is, do I even need an AI if my estrogen is already below 12, and also, is it worth all of the side effects for a "weakly" positive tumor???

    Please post any insights.  I'm having trouble with this decision.

  • BonnieK
    BonnieK Member Posts: 271

    I started Femara last week after being on Arimidex for just over a year and having terrible side effects.  The oncologist took me off the Arimidex for a month and I felt much better, but the joint problems persisted.  He is referring me to a rheumatologist for what we both think is worsening osteoarthritis.  The Femara, so far, is causing almost continuous hot flashes.  Effexor doesn't seem to help, so I'm hoping time will allow my body to adjust and the hot flashes will subside. 

    -bonnie

  • mbtlcsw01
    mbtlcsw01 Member Posts: 250

    I've been on Femara since 4/2008.  I had the usual aches and pains, but my left knee really flared up in Feb 2010 and again in April of this year.  I saw my onc who sent me to a rheumatologist.  My onc also put me on Vitamin D.  Had a dexa scan and I have the bones of a 30 year old woman--I'm 56.  Wooo Hooo. No bone loss.  The rheumotologist dx me with "pseudo gout" in my left knee.  He said something very interesting.  He said many cancer/chemo patients have had their immune system shot out from under them.  If there is anyting lurking in the body, it may attack with a vengance.  He believes this is what is happening with the pseudo gout situation.  I am able to maintain good functioning and less pain by uping the ibuprophen and take it 3 times a day.  I'm walking so much better and now swimming regularly.  I was convinced my problem was from femara, when, no, it was not.  Just cancer and chemo did that for me:(

  • sanaisa
    sanaisa Member Posts: 58

    I have been on the Femara now for a little over a month and cannot believe the stiffness I have!?  When I wake up and get out of bed, I walk worse than my 86 year old grandma (I am 46).  At first, I can barely stand up straight and my ankles barely bend, feet are so sore, as are my knees. I do Yoga 3-4 times a week and even my instructor has noticed a marked change in my flexibility over the past two weeks...it's almost as if I am new to Yoga.  I don't know if it's the Femara, or just being 6 months PFC... but I am definitely having considerable changes in my joints and muscles from something. :(

  • KristyAnn
    KristyAnn Member Posts: 131

    weety,

    I am VERY weak ER+ on femara. One of the tests showed 1% positive and the other had me in the lowest category of ER +. Doc suggested femara due to age (in my 40s) and I opted to go ahead and treat the ER+ part

    Kristy

  • jacee
    jacee Member Posts: 219

    I started femara in Jan. I had an oopherectomy prior to mastectomy. 97% ER+. I took femara until the end of May and had to stop. Like so many have said, I could hardly walk , standing hurt, fingers and ankles swollen, slight popping in finger joints, and what I think is a trigger finger on one hand. I  can't imagine what 5 years would be like.5 months was horrible.

    I didn't ask my onc, I just stopped taking it. I later called my onc nurse and he said he was sure they would want to try Arimidex. Now a week has gone by and I haven't heard from them. Kinda scary. I don't think I even want to try something else. How do you decide? My quality of life was impacted greatly. I have been sedentary for a year now...going thru treatments...couldn't wait to finish rads so I could start exercising again and lose some of this fat that is producing estrogen.  But instead I couldn't even walk across the room.Would it be better to take femara and sit around and gain 50 lbs over the next 5 years because I can't move??  Or take cholesterol lowering drugs, a diuretic, pain meds, bone builders, nerve meds for tingling and numbness.  What would all that do to my kidneys and liver after 5 years. It seems like a "no win' situation. I don't usually give up so easy, but the pain was immense.  BTW....I've been off it for 2 and a half weeks, and symptoms haven't subsided. THAT scares me to death...

    Just needed to rant. I'm very confused about where to go from here...

    Joni

  • lassie11
    lassie11 Member Posts: 468

    It's a tough call that only you can make Joni. I have been on Femara for about 9 months now and just noticed something interesting. While I certainly have various aches and pains, they change! For example, my right thumb joint was really sore for some time. Now it is fine - and my left wrist is sore. I had a trigger thumb and finger for a while, and not now. I don't know if that is what others experience but it is comforting to sort out that, for me,  each pain is not something that will stay for the full five years - rather something that will go after a while. I hope.

  • activern
    activern Member Posts: 111

    Seems like most of us have the same problems with this drug.  The manufacturers should list the severity as part of the warnings.

  • BonnieK
    BonnieK Member Posts: 271

    I've been on Femara for just 10 days, after being on Arimidex for just over a year.  Has anyone experienced terrible itching (no rash at this point) with the Femara?  I'm scratching like I've got bugs and don't know the cause.  Femara is the only new drug I'm taking and my diet hasn't changed either.  I feel like a dog with fleas must feel -- LOL.  --bonnie

  • Harley44
    Harley44 Member Posts: 2,126

    BonnieK

    I have been having some itching too, but I didn't relate it to the Femara.  I have been taking Femara since Jan. 1st.  The itching has been happening, on and off, for the past 3 weeks or a month.  BUT, it SEEMS to have gotten better lately.  I was getting these big red sores all over my body!  My legs, and then my back.  

    I thought it was related to my recent switch in  laundry detergent... it was a HUGE bottle of ...

    Purex...    So I am back to ALL  free and clear....

    Harley

  • Harley44
    Harley44 Member Posts: 2,126

    I think I have an issue of 'trigger finger', but it's just my left pointer finger.  I forgot to ask my onc about it today...  he would just blow me off anyway.   I mentioned stiffness and achiness...

    he said that it could be my vitamin D levels...  I told him that they were LOW NORMAL in December, when I was tested.  He checked his records and said:   No, it was HIGH!   58...    I think he had someone else's chart, cause I remember it being 38...   I didn't question it...  he is doing another vitamin D test so we shall see what happens.  I should know the results by Tuesday.  

    I HATE what this drug is doing to me, but...   I know that I have to take something to prevent recurrence.  So, I'll just take my lumps and keep going.  I have 2 1/2 more years of hormonal therapy....   

    Harley

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