Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Fill Out Your Profile to share more about you. Learn more...

FEMARA

Options
12357353

Comments

  • Lories
    Lories Member Posts: 23
    Options

    Hi Renee, thank you for such a great post. 

    I really enjoy hearing a positive insight - I totally agree that we are doing this to get better, and one of the side effects is Life. 

    I am set to start Femara next week, I have a list of vitamins that I got from this website and hope that cuts some of the SE's, but no matter what I know these will be a necessary evil, so hopefully I can eliminate or lessen some. 

    thanks again for sharing and making my day.  Lori

  • dudley
    dudley Member Posts: 1
    Options

    I have been on Femara for 15 months  and I too feel like i am 80-90 yrs old.  My onc acts like he does not believe the pain i have and says most women just put up with it.  also, the "hot flashes are terrible-  one minute i am sweating like the "the proverbial pig", when the flash is finished, I freeze from the sweat evaporating. i have tried duragesic patches, vicodin, ben-gay,ibuprofen etc.  exercise makes pain worse- i cant run anymore and i used to run all the time.  presently,  i am using capzacin (over the counter, made from hot peppers) and it does seem to help somewhat.  i have been dix with oeteoporosis since starting femara.

       I HATE FEMARA  AND DOCS THAT DONT BELIEVE THE PAIN

  • crazy4carrots
    crazy4carrots Member Posts: 624
    Options

    ReneePals:  Try L-Glutamine for the numbness and tingling.  I experienced that after finishing taxotere and it really helped.  I take a 500mg capsule before bedtime but I understand that others take more.  From all I've read, it doesn't hurt!  You can google it and get more info -- just stay away from websites that sell it!

    Good luck!

    Linda

  • golfer779
    golfer779 Member Posts: 410
    Options

    Well I have switched from Femara to Arimidex after about 7months of having very painful elbows, wrists and hands.  This is not condusive to a good golf game !!!  I'm hoping like heck that I tolerate the Arimidex a bit better ... if not I'll probably be trying Tamoxifan ... wow, never thought after surgeries, chemo and rads that this journey would still be such a PITA .

  • SQK
    SQK Member Posts: 23
    Options

    Thank you, kerry_lamb for replying about the bladder irritation thing.  I talked to the nurse from my onc office on Tuesday and she said that even though bladder irritation isn't a documented side effect of femara, that doesn't mean it isn't a side effect for some of us.  She was going to check with the doc to get further insight, and get back to me hopefully some time today or tomorrow.

    I also wanted to encourage those who are just starting this med.  For me -- other than the bladder irritation which kind of comes and goes -- the main side effects were hot flashes and joint pain.  Since I started on the femara last summer, both of those side effects have subsided some. 

    Thanks also to Renee for helping us remember the big picture.

    All the best,

    Sue K.

  • Reneepals
    Reneepals Member Posts: 64
    Options

    Lories,

    Side effect, Life! I like that! We are all in this together, That is why I joined the Avon/Love Army of Women. It is this huge project that Dr. Susan Love & the Avon foundation have partnered with each other to get 1 million women with or without breast cancer to sign up for trials. It's the only way we are going to find a cure. All the researchers need to get on the same page, check it out and become a member armyofwomen.org.

    Linda,

    L-Glutamine, I will ask my Onc if it is ok....its so hard making sure everything we do doesn't effect everything else we do! Its unbelievale how hard it is to find any cosmetics or lotions without Parabens or Soy! Anyone else have that problem?

    Sue,

    Thanks... The Big picture is this is one heck of a journey and I am in it for the long run...We need a cure.

    Hugs

    p.s. the link doesn't seem to be working, you guys know how to get there

  • MaryS
    MaryS Member Posts: 2
    Options

    I have been taking Femara for 8 months and my worst se is insomnia.  My onc put me on ambien, actually the generic version, and it works for me.  I wasn't getting any sleep at all.  At least it seemed that way.  Other se have been fatigue and the usual aches and pains.  I already had joint pain and now it is much worse.  Hopefully it will lessen with time.  I have always been very active hiking, backpacking, mountain climbing and now most of my trail time is on horseback.  We have five horses, a donkey and 2 goats requiring care.  I am so glad they are out there in the barn because that's what gets me going in the morning.  I do feel better when the sun is out and weather less gray and rainy.

    Has anyone else experienced the insomnia and if so what did you do for it.  I tried guided imagery & various supplements.  The guided imagery (CD) helped at first but got less effective as time went on.  I hate to keep adding to the pills I take!

    MaryS

  • KristyAnn
    KristyAnn Member Posts: 131
    Options

    I have thrown out so much stuff with all the parabens and other crap- get goat milk soap at a local farmers market and order stuff from Noelle at ellenoire.com - shes a 1 year survivor and she makes her own products for her little store in Canada.

    Kristy

  • golfer779
    golfer779 Member Posts: 410
    Options

    Mary ... I don't know if I'd call it insominia ... I seem to be able to go to sleep, but the nights of sleeping through are long gone.  Between my arms aching upon waking and having to go "potty" because I drink alot of water up and til bedtime, I certainly miss my old sleep patterns.  I have used a scrip for Lorazepam more than once to ensure a good nights sleep.  I know ... another pill !

     Hate to admit it ... but I am one who did Femara for 7 months ... just switched to Arimidex this week ... I as well am very active and the aches in my elbows, wrist and hands is affecting "that quality of life thing". 

  • MaryS
    MaryS Member Posts: 2
    Options

    golfer779-I see we are located very near each other.  Do you think the dreary, wet rainy days effect our symptoms?  I know I feel much better during the sunnier months.

    I was diagnosed with interstitial cystitis many years ago so I'm used to getting up at night because of a sensitive bladder.  My insomnia makes it hard to get to sleep but I can go back to sleep quickly after using the bathroom.  The IC comes and goes and I've learned to live with it so I guess I can learn to live with Famara side effects too!

    I do take pain medication whenever I need it.  Ibuproffen works best for me.  My orthopedist told me to add Tylenol to the mix if I need it to be comfortable while riding my horse and to take Vicodine if need be.  I have hip problems and the side effects from Famara sure don't help.

    Mary S 

  • mmm5
    mmm5 Member Posts: 797
    Options

    How do you all differentiate AI SE pain from possible bone mets? I am on Arimidex for 4 months now and have increased hip pain especially one side? Don't want to go for any more scans especially when most say this is SE from AI's?

    Can anyone elaborate on hip pain

  • mmm5
    mmm5 Member Posts: 797
    Options

    1/2 of a Lorazpam (antianxiety) does the trick for full night sleep barely wake up, also a cold room with a window open makes all the difference.

  • SQK
    SQK Member Posts: 23
    Options

    Mary S -- Thanks very much for sharing about "interstitial cystitis".  I'd never heard of that, but I googled it and it is a pretty good description of the bladder irritation that I've been having and blaming on the Femara!   I'll ask my doc about that the next time I talk with him.

    Thanks again,

    Sue K.

  • jmblades1
    jmblades1 Member Posts: 3
    Options

    Hi Artsee,

    I hate to burst your bubble but there is never any guarantees.  Except paying taxes and dying!  I made it 91/2 years but during my bilateral mastectomy they found ductal carcinoma in situ in my left breast.  I was post lumpectomies, radiation, chemo and Tamoxifen at this point on my right breast due to invasive cancer (1997).  Decided to have the mastectomy due to 4 benign surgical biopsies on my left breast two years ago. The mastectomy was surgery #9 on my breasts.  27 years and 9 operations!  Good thing I had my breasts removed or I'd still have that  cancer growing inside.  I was put on Femara but deleloped a blood clot and was taken off.  Then I was put on Arosimin an d I've been on that for 2 years (talk about joint pain!)

    I have a sensative question ladies.  With all our meds and premature menopause  issues have relations with your significant other been "affected?"

    Adik

  • artsee
    artsee Member Posts: 701
    Options

    Adik....Would you like to elaborate why your first post here, warrants an attack on my so called "Bubble'? What did I say to shake your feathers? Your sensitive question hardly shows it comes from a sensitive person......If you are into attacks perhaps you shouldn't read these threads......we are here to help and support one another, so chill..............!

  • golfer779
    golfer779 Member Posts: 410
    Options

    Adik ... I'll respond .... had a great "relation" with my dh in all the ways one would want.  Since diagnosis and chemo induced menopause last spring ... it is a mental/physical struggle for me on an almost daily basis.  There is a lot to be said for the lack of estrogen in one's body !!!   Can we say ... "I just can't get in the mood".  Still hoping at some point my 45 yr old body will re-adjust to this "new norm" !!!!

  • Monique
    Monique Member Posts: 12
    Options

    Today I went to the mall with my daughter to buy some glasses -------------other than that I really didn't do much except some laundry and pick up the seven year old's room.  I feel like I'm 80 years old tonight and I am getting really discouraged.  I agree with someone on this thread who said chemo was a breeze compared to this pain.  My husband keeps telling me to call the Dr. and switch to another medicine.  I have only been on Femara for two months and was hoping that these se's would get better with time.  I have read some that for some people that happens and the thought of switching just brings thoughts of new se's. What seems to be the consensus here from all you who have been taking Femara for awhile?

    Monique

  • kerry_lamb
    kerry_lamb Member Posts: 77
    Options

    For the sake of encouraging all of you girls who are suffering (and we all are!), I have to tell you again..forgive me for labouring the point!...that exercise of the kind that makes you sweaty as hell and nicely tired, is the one thing that keeps my pain down a bit. I really notice it when I don't do it, and I am getting a bit worried about autumn and winter coming here (in Australia) because I wont be able to wear myself out outside. The foot pain is worst, as you all know, if I've been sitting for awhile. I get very nervous when I'm sitting in a waiting room full of people! Will I be able to stand at all? Will I be able to walk without stumbling? Oh the joys....XXX

  • Reneepals
    Reneepals Member Posts: 64
    Options

    Adik Sweetie, I have absolutley noticed a change in Libdo since being dx'd with breast cancer. My DH and I had a great sex life. But I do not know if I can blame it totally on the meds. I know they have a big part in it, but I think there might be something mentally going on. But I still put forth the effort (I hate even saying that) and find that when we are really in tune with each other everything is good.

    Artsee, I do not think Adik was trying to be confrontational, sounds like her personality. I know we can all be hypersensitive at times. I have been guilty of it more than a few times myself. But I do not think that she was intentionally out to insult you, just a bit of sarcastic humor.

    Monique, It took four months for most of my se's to almost subside completely, What's funny is it seems like I am now getting differnet se's (That will probably also go away) I would not give up any treatment to quickly, remember we have to keep fighting breast cancer and our body's need all the help that it can get in the war on the very sneaky breast cancer. Femara is an amazingly kick butt drug on cancer. I was dx'd with mets to Rib &Liver and it Stablized me with only 2 1/2 months of treatment!

    Kerry you are absolutley right! excercise , ie walking has helped with the joint pain,much better than the Vicoden. When I am at work, I have walking buddies who make sure I get up from my desk and at least walk a mile during the day. it helps so much its great. On the weekend my dh gets me walking a mile or two with our darling stella you see in my post. I know i need to be more active. But I'll work up to it

  • Monique
    Monique Member Posts: 12
    Options

    kerry-lamb  -  how do you do that kind of excercise with the foot pain, numbness etc.  That's really what I was wondering since it seems that the more I walk, the more numb and/or painful my feet get.  Do you just ignore it and after awhile it gets' better?

    renee - that's great that youv'e been stabilzed with the help of Femara.  I intend on fighting this cancer and don't want to give up, I just think that if another med will work and give me less se's than I would of course opt for that.  I'm just confused :O

    Monique

  • jmblades1
    jmblades1 Member Posts: 3
    Options

    Dear Artsee,

    I humbly apologize for offending you in any way.   It was never my intent to do so.  I'm considered to be a loving and caring person by my family, friends, church family and co-workers so attacks are not like me.  I believe it was my sense of humor that was unsettling to you.  Again, I apologize to you and I will be more sensitive in my remarks to you and others if I decide to come back.

    Thank you,

    Adik

  • artsee
    artsee Member Posts: 701
    Options

    Renee......I was so not looking forward to starting on Femara this week, but after reading your post I totally have changed my mind. I'm so happy that you have had such a positive experience with Femara. If only everyone could have the same thing happen. After going off of Aromasin after 6 month of joint and muscle pain, I am feeling a little unprotected right now, not being on anything.

    Kerry...I'm sorry for the pain you are enduring. But just think you got rid of the bladder problem, which is really a plus isin't it? By the way mine went away a few days ago. Strange, wonder what that was all about. Stress and nerves maybe.

    Adik..I've got tough skin...Welcome back! I pray we all get our problems straightened out eventually. I think our bodies are just off kilter and we need time to readjust to normalcy, whether it be pain, sex, depression, anxiety, coping with everyday life. We've been through hell and back. It will get better!

    Hugs, Artsee

  • LadyLinda09
    LadyLinda09 Member Posts: 1
    Options

    Hi Ladies,

     I'm so happy to have found this forum. It's my 1st post. I was diagnosed with IDC in my right breast on my birthday 09/09/08. Did the lumpectomy and now radiation. They almost immediately put me on Arimidex, which was hard on my body. The pain would start within 30 mins. of taking the dang pill. Body aches, bad pains in hands, back, insomnia and sinus problems. I asked to switch to Femara and am doing much better. It's been about 6 wks.now. I guess everyone's body is different. I also have lupus/fibromyalgia but it had been in remission for a while. Artsee, the Femara may work well for you. I wish you well.

  • Reneepals
    Reneepals Member Posts: 64
    Options

    Artsee,

     Its a tough road we are on. We are all so different in the way we respond to treatment. That is why Targeted therapy is the way to go. I was at a going away party for my Nephew who is going to boot camp. I met an older woman there who is on Arimidex. I asked her how she was doing on it. She had the usual complaints achy joints, the major issue..... I informed her about taking  glucosmine and getting a little light exercise into her routine. But otherwise she was doing well and her plan was to stay on Arimidex for 3 more yrs and then go onto Tamoxifen. Who knows by then, there is going to probably be another wonder drug out there. It is very important that all woman who have been dx'd, with any stage Bc  (in my opinion) be on some kind of treatment to fight the beast with!. Its just to dangerous not too!

  • jmblades1
    jmblades1 Member Posts: 3
    Options

    Artsee,

    Thank you.

    Hugs back at you!Smile

    Adik

  • Lories
    Lories Member Posts: 23
    Options

    Hi all, so here I am my first femara pill in hand.  My onc told me that if you are having pain it is working (sounds like when you are pregnant and if you are nauseous that is good) - the biggest oh oh I felt today was hearing the possibility of weight gain, dang it!!!

    So cheers to all!!

    Lori

  • bondiblonde
    bondiblonde Member Posts: 6
    Options

    Lories

    That's what my doctor said when complaining about al the aches and pains of Femara - if it's hurting it's working! I try and remember that when I am feeling sh***!

  • heatherpalmerton
    heatherpalmerton Member Posts: 26
    Options

    I have been of Femara, since Jan 29th 2009, The last few days I have had joint pain, My muscles on my right side of my back are hurting. I'm hoping that if this is the pain killing the cancer. It better be kicking some major cancer butt!!!!!!!!!!!!!!!!!!!!!!!!!Heather

  • TenderIsOurMight
    TenderIsOurMight Member Posts: 55
    Options

    Dear Heather, I know you just were started on Femara. While pain is not what we want for anyone, some do report that when chemotherapy works, one notices change around the body. I should think that it may be the same when one's body estrogen is swiftly dropped: bones, muscles, joints seem particularly prone to aching in one-third of women placed on AI's.
     
    I'm sorry you're feeling the pain, and hoping that a combination of Vitamin D, ibuprofen or low dose aspirin, stretching, exercise and even heat to joint might help alleviate it.
     
    But as yourself, I'm truly pulling for the Femara to kick some bu** for you.
     
    Best,
    Tender 
  • paras
    paras Member Posts: 7
    Options

    hello i started Femara two weeks ago and i have no side effects yet except the forgetfulness seems to be one thing i am having a hard time with. But i do not know if that is from the Femara or the chemo i just finished in January 2009.  i hope i will continue with minimal SE.  When have most of you started to experience bone pain.  i am going to ask my onco Dr for actonel., to prevent Bone weakness as i have osteopina  i was wondering if anyone has had bad SE from this drug and if they  have a better choice idea?