FEMARA

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  • cakes
    cakes Member Posts: 157
    edited April 2014

    Peaches, Please check with your doctor to see if it might help you to ease on into the Femara. I just know it worked for me.

    Good luck and please keep us posted.  

  • AmyQ
    AmyQ Member Posts: 2,182
    edited April 2014

    Peaches, 

    My onc said the same thing, take every other day for 2 weeks then go to every day. As I initially reported, I was taking it at night but just couldn't sleep so my husband suggested daytime and it worked!  Good luck - 

    Amy

  • peaches12
    peaches12 Member Posts: 67
    edited April 2014

    Thanks, Amy and Cakes.   I'm going to do every other night for the 2 weeks starting tonight without even asking my onc because it makes sense, especially since she told me to wait several weeks to start Femara after my body adapted to Lexipro, which I have done.   Since I had sleep problems with Lexapro till I switched to mornings I'll do the same if it happens with Femara.   I'm going to text my doctor son right now and get the ok from him.   Thanks again. (-:

  • DivePuppy
    DivePuppy Member Posts: 29
    edited April 2014

    I take my letrozole in the morning, otherwise I'd forget.  Think I've had every SE--hot flashes, joint pain, neuropathy, continued chemo brain, weight gain, hair loss, vertigo, deeper depression, sleep problems, etc. My onc has put me on gabapentin for the hot flashes and neuropathy,  and meclizine  for the vertigo.  I was already on Cymbalta and wellbutrin.  I told her I feel like I'm turning into a druggie, but she assures me these drugs are ok.  SEs started about two months into the drug, and are getting worse. I just don't want to take any more drugs.  Has anyone had success with other treatments for these SEs?  I'm so tired of feeling so bad.  Can't work, don't feel like doing much around the house.   A dear friend told me he thought I was "spinning out of control," because my house was in disarray (I used to put Felix Unger to shame)  and I can't handle bill paying and the medical bills.  (Getting them organized, fighting insurance, etc.)

    I appreciate his willingness to tell me what he truly thinks, but just feel like no one who is not part of "our club" understands what the treatment does to me.  I started letrozole in Feb. 2013 right after finishing chemo.

    Sorry for the pity party.  I would like to know how people have handled these symptoms, though.  I've read most of the posts on this topic, but want some specific suggestions if you have any.  Many thanks.

  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited April 2014

    Adnerb - How are you feeling today?

    DivePuppy - I am SO sorry you're so miserable on Femara. Have you asked your MO about possibly trying another AI? I didn't have chemo, but I had such significant SEs on Arimidex (anastrozole), and had to switch. It's amazing, Anastrozole and Letrozole are ALMOST the same drug... yet women can react so differently to each of them. Perhaps a different drug wouldn't give you so many issues. Hope you find some solutions!

  • Lilyn
    Lilyn Member Posts: 282
    edited April 2014

    I have a question for my Canadian ladies on board. Has anyone stayed on the Femera more than five years? I have

    completed the five years of Femara and my oncologist said there are no studies that show any advantage of staying

    on this medication longer. However I have seen on the Her2 forum and this forum that many of the women in the

    U.S. are being kept on the medication up to 10 years. I of course have faith in his care but am a little scared to go off. Thanks ladies

  • Lilyn
    Lilyn Member Posts: 282
    edited April 2014

    have no idea how I did that typing double spaced

  • lassie11
    lassie11 Member Posts: 1,500
    edited April 2014

    I am almost at the five year mark. Both the oncologist and my GP say five years is enough. Both of them also say that constant vigilance will be necessary ever after.  I'm OK with keeping up with various check ups and paying attention to my body - really, that is happening now anyway.

  • cakes
    cakes Member Posts: 157
    edited April 2014

    I've been told I will be on the Letrozole for 10 yrs. I had micomets in my one sentinel lymph node that was removed but will ask the Onc why 10yrs vs. 5 when I see her next month. The more info the better.

    Stay Strong Sisters

  • micheleboots
    micheleboots Member Posts: 1,993
    edited April 2014

    I'm told that I'll be on it until it stops working and we move on to something else...I have no real SEs, so I am ok with that.

    Michele

  • BigDBeatingBigC
    BigDBeatingBigC Member Posts: 292
    edited April 2014

    cakes, I too am going to be taking the pill for 10 years.  My MO said that he used to recommend 5 years but because of research and studies he now recommends 10 years to his patients.  I did not press him for more info but I will the next time I see him in May.

  • jacee
    jacee Member Posts: 1,384
    edited April 2014

    I have been on letrozole for  4 years and 3 months. After about the first 3 months I switched to 1/2 a pill a day and have continued that until the present. I did that due to severe joint pain, trigger finger and changes in my personality that I noticed, but noone else really did, or at least didn't say anything. The above mentioned side effects got much better....however I have still been plagued by fatigue, some hair thinning, extreme vaginal dryness and pain and atrophy. I cannot wait to finish this drug. My Onc said there are no studies showing a benefit to taking longer,unless you are Stage 4. Disclaimer: I went to 1/2 pill a day on my own. My Onc did not recommend it, but he knew quality of life was a big deal to me. It was either that or go off the drug completely! Hang in there ladies!!

  • savgigi
    savgigi Member Posts: 376
    edited April 2014

    I had such problems with Aromasin and Arimidex that I had few expectations that Femara would be any better. So, on my own and without my MO's knowledge, I split my dose and took 1/2 in the morning and 1/2 in the evening. After a couple of months with no SE's to speak of, I started taking the full dose in the morning. I still have some joint pain, drowsiness, and brain fog but to far less a degree than with the other drugs. A new SE with Femara is hair thinning but only my hairdresser and I have noticed it. All-in-all, Femara is treating me much better than either of the other drugs. But I will not hesitate to go back to splitting my dose if I need to.

  • peaches12
    peaches12 Member Posts: 67
    edited April 2014

    Has anyone had any intestinal problems with Femara?  

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

    No more Femara for me!!!  Though I am looking forward to no more se's from this evil, tiny pill, I need to go back to chemo.  Latest scan shows progression.  I wish you all less se's and lots of good luck!!!

    Love,

    Brenda

  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited April 2014

    Brenda, yes it is an evil, tiny pill. But we have to be thankful for the entire list of treatments that are available, however difficult the side effects.  I wish you minimal side effects with your new treatment and NED.    I hope we all will get to benefit soon from some of the treatments that are poking their heads out.  Every night, I pray that there are more and more breakthroughs.

    MsP

  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited April 2014

    (((((Brenda)))))

  • chrissyb
    chrissyb Member Posts: 16,818
    edited April 2014

    ((((((((((Brenda))))))))))). Hope the chemo kicks cancers butt!

  • Eph3_12
    Eph3_12 Member Posts: 4,781
    edited April 2014

    ((((BRENDA))))

  • DivePuppy
    DivePuppy Member Posts: 29
    edited April 2014

    Today has been a better day, if only because it was 75 degrees and sunny!  That helps!  However, the side effects continue.  I have an appointment with my onc next month, and I'm going to ask her about other options.  Everyone is so different when it comes to the side effects.  Thanks for asking!  Kathy

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

    Thanks, All!  I wish you minimal or no side effects and the best of luck in this cancer journey!!!  Maybe one day (hopefully in our lifetime) the fear of recurrence will be a thing of the past!!!

    Love and hugs,

    Brenda

  • Scottiee1
    Scottiee1 Member Posts: 2,329
    edited April 2014

    Brenda, I wish you all the best with your new treatment.......❤️

  • Tammy_M43
    Tammy_M43 Member Posts: 980
    edited April 2014

    Brenda, (((hugs))).....

    For those who think they'll forget to take their meds at night, here's my tip....I leave them under my pillow...it's saved me a number of times...

  • Scottiee1
    Scottiee1 Member Posts: 2,329
    edited April 2014

    Another tip ladies.....I leave my box right under my bedside lamp so before I turn out my light for the night! I pop that little devil.....lol

  • lassie11
    lassie11 Member Posts: 1,500
    edited April 2014

    But what if you don't have a glass of water there as well?  The logistics at night are always more difficult than in the morning. Kudos to everyone who can manage night time pills!

  • Scottiee1
    Scottiee1 Member Posts: 2,329
    edited April 2014

    lassie11.......I always have water by my bedside and I believe many others do too. I can NEVER forget to take it because I see the pack as I am about to turn out the light.

  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited April 2014

    I can never use those pill organizers because I take a different cocktail of drugs every night, depending on how I feel!

    So I do the next best thing... I line up ALL my possible drug containers out on my bathroom counter.... just like I used to bug my mom about doing! (I hide them all in a drawer if company comes over...)

    At least then I can pick and choose, and each time I remove a pill from the container I put it in a little pile on the counter. Then I review my symptoms, make sure I've got everything I need (letrozole is a regular) and THEN I swallow my pills before I go to bed.

  • mfm48
    mfm48 Member Posts: 110
    edited April 2014

    Hi Ladies.  I'm new to this board, starting Femara today - I think tonight after reading a lot of your posts.  I just feel like this is all a bad dream that we need to wake up from.  But no, this is my life.  : )  I would love to hear more from those who have not experienced bad SE's.  I know we are all different but it helps to read the positive as well as the negative.  I already have joint pain from the oopherectomy and forced menopause, my fingers are a bit stiff, and I have mild hot flashes. I can manage all of these, just worried about new SE's.   I am going to ease into the Femara by taking 1 pill every other night for two weeks.  

    I do believe diet and exercise play a big part in how we manage these symptoms.    After chemo, radiation, oopherectomy, my sister's wedding, and a long vacation with my family, I am now settling into an everyday workout and healthy eating routine.  Hoping that helps.  Would love to hear if anyone else feels better after eating well or working out?  

    Thanks for being there. 

  • lassie11
    lassie11 Member Posts: 1,500
    edited April 2014

    mfm48  You absolutely are on the right track!  I tell myself every day to get moving more. The days I listen to me I find myself more agile and with more energy. Of course, this is almost the end of my 5 years and I should have started talking to myself much earlier.

    It's interesting that the side effects of the ooph sound very much like the side effects of Femara so perhaps you have already done the hard part.

    The only thing I know for sure is that whatever happens to me is not necessarily what will happen to someone else. Also, whatever happens this month is quite likely to change in a while.

  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited April 2014

    Hi mfm48 and welcome.  So sorry that you are joining, but you will find a lot of comfort here.  Everyone is different and there are no guarantees (I think we all know that by now)....but not all people experience difficult side effects from AIs and when it is such a powerful tool in your toolbox, you want to do everything possible to be compliant to the medication.  I think that is particularly important if the studies indicate that all or some of us will benefit by taking this tiny pill for 10, not just 5 years.

    I have been on Femara for 8 months and I will share my experience.  I started taking the medication at night, but I had such sleep disturbances....difficulty getting to sleep, difficulty staying asleep.  After a week I switched to morning and that has been best for me.  After about 60 days on the medication, I started having a lot of joint stiffness and nerve pain (like zaps) from my hips to my knees.  It was like sciatica.  All of these symptoms were relieved with occassional ibuprofen and exercise.  I have ratcheted up my exercise program and I wear a fitbit to measure my activity each day to a healthy standard that I set with my doctor.  I still have stiffness when I have been seated or sleeping for a period of time, but within about 10-20 steps, I am back to the old me.  I have not experienced any hot flashes or headaches or depression or fatigue, but I am 64 so I was probably well past menopause when I was DX.   I had surgery, chemo and radiation and I was able to maintain a normal schedule all through treatment.  I worked from home after my surgery with no problems, and I missed a total of 8 days of work during my 6 rounds of chemo.  It wasn't fun, but after chemo and radiation, Femara seems like a walk in the park to me.   I do strongly believe that a healthy diet and regular exercise is so very important to managing these side effects.  I was always a daily "walker",  but when I started taking Femara, I found that I needed to ratchet it up with more weight bearing walking and light jogging. I would estimate that I have doubled my activity in the last 8 months.  

    Based on what you are doing already, you are going to do great!  And if you have any struggles...just come here for encouragement.

    Love, MsP  

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