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FEMARA

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Comments

  • eph3_12
    eph3_12 Member Posts: 2,704

    Thanks Caya,

    I'm thinking about trying to switch over to taking it at night time this weekend and see if there's a difference in the daytime.

    Joni

  • Harley44
    Harley44 Member Posts: 2,126

    Joni

    I also take Femara at night...  as I was taking Tamoxifen at night and haven't had any problems with it.  On and off, I've been having trouble sleeping but it might just be stress issues I'm dealing with right now.

    reeltchr,

    Sorry, I guess I was having a bad day, and thinking about working on Monday got me all spun up.  I think I was maybe overdoing the exercise, just a tad...  so Sunday night, before bed, I also took 3 Ibuprofen, and they really helped my aches...  I felt better in the morning!  I will go out for a run today though... 

    Caya, 

    I'll try to remember about the epsom salts...  didn't know that about the magnesium... it is absorbed through the skin, you say??    I have a friend who sees a naturopath.  She isn't a bc survivor...  anyway...  he told her to take a 1 hr. bath in epsom salts EVERY DAY, and afterward, she takes a shower...  maybe to rinse off the epsom salts?   I don't understand that one...

    Good luck to us all... 

    Hugs

    Harley

  • reeltchr
    reeltchr Member Posts: 139

    Harley - Soo glad to hear that you are feeling better. I think in our mind-frames we tend to want to make sure we cover all the angles and, as such, overdoing is easily accomplished. You're a runner -- that's great. Do you do any other type of exercise as well? I like to walk and Pilates is my saving grace. Have a great day!

    Chris

  • Harley44
    Harley44 Member Posts: 2,126

    Chris,

    I walk also, but I want to increase my distance, and it seems to just take me FOREVER to finish, when I walk...   even though, I think I walk faster than I run... go figure...

    I also workout on the elliptical torture machine, when it's too cold to go outside, or rainy...  I used to do yoga, and may start again.

    I'm glad that I figured out why I was feeling so achey...  I was starting to get worried... You are right.  Our minds can go to some pretty dark places sometimes....

    Harley

  • Pattyfish
    Pattyfish Member Posts: 5

    Hi, reeltchr,

    I'm a wastchr--retired in June.  I guess bc is part of my retirement packageWink So far, I have just been having mild fatigue.  I'll keep everyone posted.  Thanks for the kind words.

    Pat

  • kac
    kac Member Posts: 43

    Hi Ladies,

    Been on Femara for 2 months now.  SE's kicked in about 2 weeks into it.  My feet bother me most, my heels and toes.  Also getting to my hands, especially my one thumb!  I'm very tired but I just had my second reconstruction surgery a month ago, so I think that may be some of that.  My hot flashes seem to have gotten worse since surgery, especially night sweats,  maybe cuz I can't do aerobics yet.( they did seem better when I was able to do aerobics before surgery).  I can tell you that I had to go off of Femara 4 days before surgery and stay off for 4 days after(clotting issues, I guess) and I felt a lot better!  I think it has also delayed healing, as I'm still seeping!   Also, the vaginal dryness is awful!  I use replens every 3 days and it is still awful!  I'm only 44 but feel much, much older.

    As far as the glucosamine/chond combo, my onc said not to take it yet as there is some controversy with it.  She didn't elaborate but I plan on bringing it up again when I see her next month. 

    I know other ladies that don't have issues but unfortunalely I'm one that does.  good luck to the rest of you.  Take care.

  • nene2059
    nene2059 Member Posts: 53

    Uh oh I have been taking the glucosamine/chond because I did not know of any issue with it and Femara.....if anyone knows of anything can you elaborate?  This is all so confusing.  We all need to be doctors or pharmacists to take all of these meds and then the meds for the side effects from the other meds.  I agree with you on the feeling older,  I am 37 and this vaginal dryness, joint pain stuff sucks.  I have done so well on the hot flash front that I was hoping I would sail through the other se's of surgical meno and then the extra kick of Femara.  Ugh.

    Best wishes to all.

  • kookiesmom
    kookiesmom Member Posts: 57

    KAC - I was glad to see you mentioned having to go off Femara for surgery.   I was thinking I would go off anyway before another surgery as I had a bloodclot when I was on Tamoxifen and don't want to go through that again. I have been on Femara since Saturday - so just 4 days and no changes to report.  I remember tamox. took awhile but I am still hoping for the best! 

     Harley - I was thinking about taking up yoga too.  I have never done it before but it interests me.

    Anybody know if it is ok to take Omega3 with Fishoil pills?  I started it today and now I am hoping it is OK to take with Femara.  Are there drugs that inhibit Femar's effectiveness like tamoxifen had? I remember benedryl was a no-no on tamox but can I take it now?

  • reeltchr
    reeltchr Member Posts: 139
    I would be interested in hearing about the controversy regarding glucosamine/chondroitin. I have been taking that for some time now--before the Femara. My onco knows I take it and didn't make any remarks about it. If anyone hears or learns anything about it, please let us know. Have a good one ladies.
  • eph3_12
    eph3_12 Member Posts: 2,704

    I was told by onc that Fish Oil is OK on Femara, but Flaxseed oil capsules aren't. 

  • Caya
    Caya Member Posts: 46

    My onc. did not give me any no-no's regarding taking viatmins/supplements with Femara.  I will ask him again when I see him in mid-March.

    I don't take a shower after my bath with epsom salts - and I think a one hour bath EVERY DAY is stretching it.  I remember reading that you should soak for about 15 - 20 minutes for the salts to be effective, but hey, if you want to soak longer, I'm sure it's okay.

  • Harley44
    Harley44 Member Posts: 2,126

    Joni,

    I would think that Fish oil should be ok with Femara...  so flax seed is a no no?  I just bought this pasta that has flax seed in it...  I didn't want to get it, but my dh thought it might be a good alternative.  I guess I won't buy any more of it... 

    kookiesmom,

    I took yoga many years ago.  But... I try to do the poses correctly, because the class I took, the instructor was very strict about holding the poses just right... and I get very sore when I stand as straight and tall, and hold the poses...   maybe I should just do gentle stretches, and not be so concerned with getting the poses just right...  when I get sore, then I don't want to do yoga as much and I wind up quitting...

    Caya,

    My friend is kind of funny about doing things exactly the way her dr tells her to do them...  she may still be doing the meditation exercises.  Once when I called to talk to her, her dh answered the phone.  He said " Irene is meditating."   I think she was also doing the meditation for ONE hour... :D

    Hugs

    Harley

  • cheers247
    cheers247 Member Posts: 57

    Hello all, I've been having pretty bad pain with the Femara (been taking it for 2mos now).  Onc. told me to stop it today, going to start Arimidex in a couple weeks... I may be back on Femara, depending on how it goes. (I've tried Aromasin too...can't take that one either).

  • Harley44
    Harley44 Member Posts: 2,126

    Jessica

    Sorry you are having so much trouble with these AIs...  maybe you could try Tamoxifen??   I took it for 2 years, but my onc's plan was for me to switch to an AI after two years, so here I am...  I keep telling myself that if I have too much trouble with Femara, I can always switch back to Tamoxifen...  I just don't know if I can take these AIs for THREE years!  YIKES!   I'm just taking it one day at a time... that is what I did with Tamoxifen, and I didn't think I could do TWO years on that, either!!  :D

    Good luck to you!

    Harley

  • cheers247
    cheers247 Member Posts: 57

    Thanks Harley, I may have to go that route... time will tell.  All of these anti-estrogens scare me too!! 

  • Jane_M
    Jane_M Member Posts: 932

    Why don't people understand that these AIs have SEs?  I get the oddest comments and looks when I complain about the pain, swelling, etc. from Femara. 

  • kac
    kac Member Posts: 43

    Ladies,

    I know that plenty of ladies take the glucosamine, that's why I asked my onc about it.  I will definitely find out more info when I see her next month as to what the problem is.  I'm wondering too if she wanted to see what kind of SE's I had first.  Who knows? 

    Here's another one, my DH had to go to onc's office the other day(long story) and she also told him when I go in next month that she needs to check my liver enzymes.  I knew she was doing bloodwork for tumor markers and cbc but neither one of us remembers her saying anything about the liver.  I suppose that Femara can cause havoc with that as well!  It really is amazing how we find this out as we go.

    Jane, I'm with you, people just don't understand but I make it a point to tell them now.  I'm so tired of them thinking that it's no big deal!  It's funny, people understand about the chemo thing but not about these other drugs we take.  What's the saying "walk a mile in my shoes".

    Anyway, anyone having any other insights to what we can and can't take while on Femara, pass it on.  Have a great day.

    Take care,

    Kelley

  • Harley44
    Harley44 Member Posts: 2,126

    I agree with you, girls...

    People think that you just take a pill every day, so what's the big deal??    I guess if they had to change places with us, maybe then they would understand...

    Hugs

    Harley

  • Twinkleling
    Twinkleling Member Posts: 1

    Hi all, I am new

    I just read through the posts, and thank you all for being so supportive. Reading these posts makes me feel less alone.

    I have a question RE: FEMARA

    Do any of you get SEVERE bloating? espeically after a meal? I've been extremely gasy and bloated after meals. Been on FEMERA for 4 months.

     My biggest concern is COLON cancer. I just had a Colonoscopy, and the docs took some tissue for biopsy.

    Now i am just worry sick, I was just diagnoised w/ breast cancer last Aug, and had mascetomy

    Please help.

  • dreamwriter
    dreamwriter Member Posts: 678

    Twinkleing... please try not to worry too much.  I found that my body changed after the mastectomy so that I felt like I was wearing a barrel.  Yes there is more gas and bloating.... I dont know if it is the Femara but I find myself cringing from gas pains especially before any kind of movement.

    I sincerely hope that your biopsy is clear.... dont they always take tissue... sorta to make sure it was worth all the medical drama to have it (LOL).

    I DO NOT WANT TO SEE YOUR NAME in the Stage 4 forum unless it is to say... Whew, dodged a bullet.  And you can say that right here.... k?

    If there is anything you need support for, PM me, I will hold your cyber hand.  As would a few hundred other ladies here.

    ((((((((((twinkleing))))))))))

    edited to correct a typing error and to add hugs

  • infohh
    infohh Member Posts: 22

    Hi All

    I have been on Femara since June 08 been very stiff and achy untill last August I started Zometa 2xyear and daily calcium1000 vitamin D3 1000.  Most of the pains are gone my mobility is  a lot better too.

    HH

  • HollyHatesFemara
    HollyHatesFemara Member Posts: 16

    Hi everyone.  Just a quick summary.  Was diagnosed in 2001 with ER+ stage 1, which was quite aggressive, but no lymph node involvement.  Had chemo, mastectomy and tram flap recon.  Was on Tamoxifen for a little over a year and had a recurrence in the same side under the chest wall.  They decided to put me on Femara, but I was not postmenapausal, so had to endure Lupron shots in the butt for 2 years to put me there.  Started Femara in 2004 and passed the 5 year mark in July.  Have been having hot flashes for 8 years, trouble sleeping, etc.  The joint pain in the last couple of years has been awful.  Also, coughing, headaches, stomach discomfort, dizziness, etc.  Would you believe that the doctors have diagnosed me with systemic Lupus, which I still think is totally wrong.  No-one out there wants to believe that this drug causes all these problems.  On top of that, the oncologist is not sure if there is a benefit to keeping me on the drug or not as I had a second occurrence and the course of treatment is not the same.  We are waiting for the latest "study" before she decides to remove me from it.  I can only hope that when I finally come off it, all my other problems will disappear.  Is there anyone else out there that has been on it this long and had all these symptoms?  I just want to be taken seriously.  I am on Plaquinil for the joint pain and Prednisone, which is a steriod and we all know how bad they are.  Any suggestions??  I too take a lot of hot soaks to ease the pain.  Thanks girls.

  • Harley44
    Harley44 Member Posts: 2,126

    Twinkleling,

    Welcome to this group...  I haven't heard about a link between Femara and colon cancer, but... my surgeon told me and I read on bc.org that there is a link between having had bc and colon cancer.  My surgeon even did a colonoscopy at my 1 yr. follow up, but it's just a general routine test.  I'll be thinking about you, and praying for benign results....   

    (((HUGS)))

    Hi Dreamwriter,

    Haven't seen you for awhile...   good to see you!

    Holly....  

    Hello and Welcome!  Sorry you are having such a tough time with Femara.  You've been through so much already!!

    sorry, but I don't know what the protocol is for women who have had a recurrence while on Tamoxifen.  I just assumed that they would switch you to a different drug, but you wouldn't continue with Tamoxifen, since that drug didn't work for you.

    Sending HUGS to you!  Please post and let us know how you are doing.

    Harley  

  • HollyHatesFemara
    HollyHatesFemara Member Posts: 16

    I was only on Tamoxifen with the first occurrence.  I have now passed the 5 years on Femara.  Even the oncologist doesn't know what the protocol is yet.  She's waiting for the next "study" to be over.  So, in the meantime, I'm now on Femara for 5 1/2 years!!  Just want someone to believe that all this is not only associated with this drug, but not pin it on another diagnosis like Lupus.  I guess the quality of life isn't as important to them as curing us.

  • Monty
    Monty Member Posts: 146

    Hi Twinking

     I too have severe bloating after meals, and I get pelvic pain too.  I'm seeing my family doctor next week for my annual physical so I'll ask her.  I tried switching to arimidex because of the aches and pains but that made the already bad constipation problems worse so I switched back to Femara, Ill tell the onc when I see her next month.  Luckily for me the aches have subsided in feet, hands etc so maybe that was more the combination of Herceptin with Femara/Arimidex, they seemed to have gotten better since I finished Herceptin last October and I guess it took a few months to get out of my system.

    I was told by my onc not to take anything with Flax seed in it as it contains plant hormones - and we all know we are suppposed to now have hormone free bodies - uugghhh!!!  I haven't found any reduction in the hot flashes, luckily for me I take a sleeping pill every night so at last I usually get a good nights sleep which definitely helps (BIG TIME).  I also find that stress (large or small) seems to bring on the aches and pains, so I try to stay as stress free as possible, but that's not always so easy - teenage son, full time "stressful" job ...... you know how it goes.

    Big hugs to everyone, take care

    Gaynor

  • HollyHatesFemara
    HollyHatesFemara Member Posts: 16

    Hi Kelley:  Weird you should mention something about the liver enzymes as every time I get my bloodwork done at the onc., they always mention that my liver enzymes are elevated.  It's been that way for the past 5 years or so.  They do a CAT scan and never find anything, just a small spot, but it never changes.  I've given up on worrying about that one.  And the rest who are having the vaginal dryness, etc., the gyno put me on Vagifem, which has the smallest amount of estrogen and is a pill that is inserted and cannot travel outside the vaginal wall, so no worry of estrogen getting to the rest of the body.  I'm a very happy camper since!  At least sex can be fun again!!

  • Harley44
    Harley44 Member Posts: 2,126

    Gaynor

    Flax seed is a phytoestrogen, I think.

    ...Now I'm getting worried about liver enzymes!  Geez, why is it always SOMETHING???

    Harley

  • Fidelia
    Fidelia Member Posts: 8

    Because with this disease it IS always something :( I have also been on Femara for 18 months after tamoxifen stopped working - the barrel-shape and the bloating - oh yes :(

    Fidelia

  • kookiesmom
    kookiesmom Member Posts: 57

    I have kind of strange question - does anyone else feel like they are going to get their period on Femara?  I had my last period in October and was supposed to start Lupron shots in December but my bloodwork said I was now in menopause so they skipped the shot (after much deliberation) and had me start the F-pill.  I am not sure about this menopause as I really feel like my friend is coming.  I wonder what happens if it does arrive.  Does it mean that it isn't working?

  • bopeep
    bopeep Member Posts: 31

    I've been on femara for nearly three years and I am beginning to have some serious problems. Arthritic flares, problems with major joints, like my hip.  A few weeks ago I had pain in my wrist joint that was so bad I couldn't use my hand at all...which is a big problem for me because almost everything I do involves working with my hands.
     
    Every night the pain starts to kick in after midnight and often wakes me up very early in the morning disturbing my sleep.  Aspirin doesn't touch it.  The only thing that helps is to get up and start moving around.
     
    After a bad arthritic flare last fall (stiffness and achiness all over, fever) I went too see my regular doctor, who wanted me to discuss a change in medication with my oncologist.  My oncologist actually suggested that I might want to stop taking Femara or any kind of hormone therapy...I was really frightened at this idea. We had ruled out tamoxifen because it is contraindicated with other medication I am taking.  I am also terrified of taking any other form of synthetic estrogen since I feel that my cancer was the result of being exposed to other synethnic estrogens like DES and HRT.  She suggested taking one aspirin every night because of the way it works as an anti-inflammatory. This actually worked quite well--for a while--but now things are bad again.
     
    According to latest bone density test, I am at high risk for a major bone break.  I am actually at higher risk than most women my age because I am very active physically--running, skiing, biking, working outside--and seem to end up in the ER once or twice a year with some kind of minor traumatic injury.  
     
    So I am wondering what to do.   I'd love to get off Femara, but can I live with the anxiety about a recurrence? 
     

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