Starting Femara ? Maybe ?

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Anonymous
Anonymous Member Posts: 1,376
edited August 2014 in Stage III Breast Cancer
Starting Femara ? Maybe ?
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2014

    Anyone taking Femara right now that could give me some advice or info about how you're doing on it?  Did you have any of the nasty SE's that they listed, i.e., nausea, vomiting, diarrhea, constipation, swelling, bone pain, dizziness, weakness.  Crap the list was LOOONNNNNGGG.  And please let me know if anyone started on Femara and couldn't do it, then switched to another?  Thanks a bunch ! -- Shelly

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  • savgigi
    savgigi Member Posts: 376
    edited June 2014

    Hi, Shelly. There is a large thread under the Hormonal Therapy topic that is pretty active. Come on over there and you will find lots of info.

    Jeanie

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  • Momine
    Momine Member Posts: 7,859
    edited June 2014

    Shelly, the list is way worse than what most patients actually experience. My doc said we would take it as it comes, and if at any point it became too much, we could discuss alternatives.

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited June 2014

    Hi

    I am preparing to go off femara after 5 years.  I found the early days to be the hardest with joint stiffness, etc.  I never read the side effects because I knew I would start to experience them!!!  I take it at night, which helped with the stiffness and make sure to exercise every day which really also helps.  I am interested to see if my fuzzy mind clears up!!! Other than that, it has been fine, but I will be happy to ditch it on July 1

    If it is too much, they can switch you to another AI.... but you might need to try it for 6 months before you know...

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  • mary625
    mary625 Member Posts: 1,056
    edited June 2014

    If you take it at night and exercise daily, you may be able to get around or manage the initial side effects of stiffness.  After about 6 months, it seems to go away altogether.  Other than vivid dreams (not scary, just vivid), I've had no other side effects.  I knew I wanted to take it no matter what.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2014

    Jeanie - OMG yes LOTS of ladies on the femara. The thread is several years old and still going strong.  For the most part, I like to see opinions of the drug from similar Stage 3's as myself.  As 3's we have been sometimes through more treatments, harsher treatments and it's good to see how they are doing on AI's.  I type/keyboard for a living and am scared about the chance of hands and fingers pain.   I just hope something else comes along soon that is just as effective and with little or not SE's for the general population !!  

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  • Lily55
    Lily55 Member Posts: 3,534
    edited June 2014

    i changed to Aromasin and many side effects have gone, still some but I can manage those with complementary therapies whereas Femara affected my emotions so much I was permanently low, out of sorts and feeling hirrible 

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  • Kicks
    Kicks Member Posts: 4,131
    edited June 2014

    I've been on Femara/letrozole since 2/2010 with no SEs.  

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2014

    Kicks - Wonderful you have no SE's !!!  

    Lily - what kind of therapies we talking ?

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  • Lily55
    Lily55 Member Posts: 3,534
    edited June 2014

    The most effective against joint pains and general bodily discomfort for me are Boswellia and Liposomal Curcumin (turmeric)........they are great anti inflammatories and Curcumin is an an immune booster and anti cancer drug too. Aromasin works slightly differently to the other two apparently and I have to say it is better for me, only issue is it is making me gain a little weight but for quality of life, emotionally and physically,  there is no contest..............

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  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited June 2014

    I've been on Femara since July 2012.  My only noticeable side effects are some mild/moderate stiffness and pain in some joints.  Knees and hands, mostly, and exercise helps a lot. 

    I would tolerate more discomfort, frankly, for the added assurance that there's still a warrior on the field between me and FBC. 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2014

    Lily:  I have tumeric that I take, but before starting the femara I want to ask onc does tumeric interfere with femara?  I found out earlier that anti-depressants other than effexor were combatting the effectiveness of tamoxifen.  I do not have need to take anti-depressant meds yet, but if femara makes me out of sorts and depressed I will definitely talk to the onc about switching AI's.  Shelly

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  • peacestrength
    peacestrength Member Posts: 690
    edited June 2014

    Shelly - I also take Boswellia (along with several other supplements) since it is an anti inflammatory.  

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2014

    Peace - what other supps do you take besides the tumeric & boswellia?  

    Shelly

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  • peacestrength
    peacestrength Member Posts: 690
    edited June 2014

    Shelly - I'll send you a pm since the list is long and I'm cautious because there is no magic bullet(s) for everyone.  What's been recommended for me may be totally different for another.

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  • Lily55
    Lily55 Member Posts: 3,534
    edited June 2014

    I checked about aromasin and turmeric and it does not counteract the AI´s....

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2014

    Anne-- no need to apologize.  I appreciate hearing everyone's opinions no matter what stage they are.  When doctors start "individualizing" treatments a little more, that would be when the status of stage may be more important.  

    Momand2kids- Great to hear you are off the femara after 5 years !!!  I hope to get there too. 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2014

    Shelly56, I have been taking Arimidex and then Femara since March, 2005.  I am one of the fortunate ones.  I had a little joint pain for the first couple of years and really bad hot flashes at night, but that all resolved.  I had a pretty scary diagnosis so I plan on staying with the Femara as long as my bone density holds up.  So far, so good.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2014

    Notagaintoo - hope I do as well as you have on Femara.  Do you do anything or take anything to keep your bones in good shape?  

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  • clariceak
    clariceak Member Posts: 752
    edited June 2014

    I have crappy bones so I receive an Zometa infusion every 6 months.  There is some evidence to indicate that Zometa may help prevent bone mets.

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  • peacestrength
    peacestrength Member Posts: 690
    edited June 2014

    I too get Zometa every six months...to help with bone strength but primarily to hopefully reduce bone mets risk.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2014

    My last bone density was actually better results than the one before, and I would only think if I started getting Zometa it would be even better for the old bones.  thanks 

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  • newbee
    newbee Member Posts: 17
    edited August 2014

    hi Shelly. I tried them all and am on Femara now...I am learning to live w the fog, low energy and joint pain. I just had my 18 month after surgery mammogram and so far so good. I would like to know if anyone has decided to take these drugs every other day....or have you discussed that w your doc....I frankly think medicine is given in "over kill" doses...Once the hormones are squeezed out of you...can you cut back a bit on these nasty drugs? 

    Keep on keepin' on Shelly

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  • newbee
    newbee Member Posts: 17
    edited August 2014

    hi Shelly. I tried them all and am on Femara now...I am learning to live w the fog, low energy and joint pain. I just had my 18 month after surgery mammogram and so far so good. I would like to know if anyone has decided to take these drugs every other day....or have you discussed that w your doc....I frankly think medicine is given in "over kill" doses...Once the hormones are squeezed out of you...can you cut back a bit on these nasty drugs?

    Keep on keepin' on Shelly

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2014

    Ok now part 2 question-- does anyone have "osteopenia"?  The onc said I have it and the AI's (Femara, Arimidex & aromsin) will only make the bones weaker still.  That scares me a LOT !  What does anyone's onc say about it? 

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  • Momine
    Momine Member Posts: 7,859
    edited August 2014

    Shelly, yes, I had osteopenia when I started. It is worse now. However, my hip is fine. It lost some bone initially, but is now stable and not osteopenic. My back is where the problem is. On my last DEXA, 2 of the 4 vertebrae they check are slightly improved, but the other 2 have deteriorated a bit further.

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  • Kicks
    Kicks Member Posts: 4,131
    edited August 2014

    I have a huge family history (both sides) of osteoporosis and have been osteopenia for MANY yrs.  I also went through a relatively early natural menopause (44).  Did not do HRT (well did try for a couple/few months about 5 yrs post but didn't 'like' it).

    I have been on Femara/letrozole since Feb, 2010 and have progressed from osteopenia to osteoporosis in that time but for me, it would have happened anyway.  It's remaining stable on Fosamax.  I do also have significant arthtitis in my upper back, thanks to all the riding injuries over my life.  Again, this was present long before IBC or any TX involved with it.  It has gotten worse over the years but that's what happens as you get older (I'm 68 and VERY active).  

    shelly56 - Why is your Dr saying you have osteopenia?  Have you had a bone density test?  Should be done at least annualy if on estrogen blockers (or just an older woman) according to my Drs to be pro-active in handling it.  A bone density teat os mot the same as a bone scan.

    My Chemo Dr did not deal with any of my issues not directly related to IBC - my PA does.  She has been my PC for about 18 yrs and I could not ask for better care.

    (By the way, I get my care through VA and have had fantastic care.  I was immediately 'out sourced' the day I saw my PA that day for all my care with IBC.  When my eye problems started a year ago in July, I was also 'out sourced' that day - my eye surgeon has a Voucher for me til at least June 2015.  Hubby also gets his care through VA and gets great care.  Certainly there have been some problems but all VA's are not 'bad' as some would want all to believe.)

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  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited August 2014

    Kicks, glad you've had good care through VA.  My son, a physician, used to get his care through VA and was very satisfied with them.  He didn't need much, being young and healthy, but said they were easy to get appointments and follow-up. 

    I've been on Femara since July 2012 and my bones are holding up well.  I'm also very active.  I had been bugging my MO to start a bisphosphonate in an effort to prevent mets to my bones, but the very latest research indicates it's not effective for that.  She'll administer a bisphosphonate if my bone density decreases, though. 

    My Femara side effects have been minimal.  Some stiffness and joint pain in my hands, hips, and knees, but that's about it.  When I think about how much of a barrier it is to the growth of any remaining cells of my very estrogen-positive breast cancer, I'm grateful for the help.  I would put up with quite a lot for the knowledge that I'm doing my best to keep this monster in its cage.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2014

    Kicks:  Yes have had 3 bone density scans and from the first one until now, they have said I have osteopenia.  I do exercise about 3 hours a week in the gym but probably should do more but then again, was at "perfect" weight when dx'd.  I am just really apprehensive about the SE's of the AI's or having to take fosamax - either temporarily or permanently.  Does sound like you have excellent care with your PA (Is this short term for Primary Physician or Physician "Assistant").  

    Sbelizabeth:  Where did you do your DIEP reconstruction?  It sounds like you had great results -- me not so much.  

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  • Kicks
    Kicks Member Posts: 4,131
    edited August 2014

    shelly56 - J. is my Primary Care and has been for 18+ yrs and is a Physician's Assistant.  In all those yrs, she has sent me to DRs/MDs some times but not for 'general'  issues but to Specialists for specific issues.  I so wish that everyone could have someone like J. as she is so competent and 'on top of everything'.  As I have said, I could not ask for  better care than I have gotten from J. or from/through VA.

    Weight is not the only reason to be active/work out.  It gives us  so much.  I, too, do not have weight issues.  (Well other being sure I don't drop too low.)  During the late spring, summer, early fall, I get enough exercise just in what I do daily.  Late fall, winter, early spring, I spend a lot of time at the Base gym.

    There is no way to know to what (if any) SEs you might experience with any TX.  Some of us have more or less than others.  We all have different DX and react differently.  Personally, I have been fortunate with no negative SEs but I would do anything I needed to to fight the 'Monster'.  Just how I see it.

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