FEMARA

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  • cfdr
    cfdr Member Posts: 549
    edited October 2012

    Question for those of you who are experiencing joint pain. Overall, I don't feel any pain, but both of my shoulders have problems: the right shoulder has minor rotator cuff tears as well as bursitis; the left one has tendonitis. All the info I've read on letrozole just says "joint pain" but it doesn't mention exactly what the mechanism is that is causing the pain. What I'm wondering is (a) could the letrozole have made me more prone to injury and inflammation, and (b) could it be that letrozole doesn't really affect the joints as long as they remain healthy, but makes any existing inflammation/injury worse and more difficult to treat?

    I've been in PT, had a cortisone shot in one shoulder, but have significant loss of range of motion from both shoulders. Yet, every other joint in my body feels fine.

  • Shrek4
    Shrek4 Member Posts: 1,822
    edited March 2013
  • x-raygirl
    x-raygirl Member Posts: 373
    edited October 2012

    Day ~ that cracks me up ... menopause in fast forward x20!  That's how I feel!!!!

    Momine, how did you figure out that the allergies were a result of the taxotere?

  • Momine
    Momine Member Posts: 7,859
    edited October 2012

    X-ray, I obviously can't be sure. But my mother has never been allergic. SHe had taxotere and had a pretty bad allergic reaction to it the first two treatments. After finishing treatment she found that she was suddenly allergic to various things.

  • dkerler
    dkerler Member Posts: 75
    edited October 2012

    I had posted a while ago that my tongue felt funny like a burning and it was waking me up at night. Now I know it was from a watermelon allergy that I never had before. This could be related to the chemo I had.

  • cp418
    cp418 Member Posts: 7,079
    edited October 2012

    Day --- Yikes about the hair loss.  I still cannot believe how much hair is left in the shower stall.  I swear I have about half the hair compared to the start of this miserable journey.  I have to wear it super short now or it looks like sh*t......

  • Scottiee1
    Scottiee1 Member Posts: 2,329
    edited October 2012

    Cp418.......you and I are in the same boat.....I have lost about half of mine....saw a dermatologist who thought I had lost too much for it to be Letrozole ....had blood work done, but nothing showed up. I started losing it about two weeks after starting L.

  • chrissyb
    chrissyb Member Posts: 16,818
    edited October 2012

    Cp418 I hear you on the hair loss and the fact that you need to wear it super short. I also find that what is there grows super slowly as well so it only needs to be trimmed about twice a year.

  • cp418
    cp418 Member Posts: 7,079
    edited October 2012

    Yes - very frustrating as I brush to cover over the thin areas.  My hair and nails do grow quick but my hair is at least 40% less than when I started and it wispy thin fine.  The hair never grew back on legs or under arms which was nice but the head and thin eyebrows is annoying. Also within the past year or so I've had 2 small warts sprout on my finger which I've never had in the past.  This just indicates my immune system is really struggling.....

  • mary5454
    mary5454 Member Posts: 89
    edited October 2012

    I have been on femara for 3 1/2 years with varying SEs- mostly hot flashes and muscle pain but also bone loss (doing reclast) and some blurred vision. Over the last few weeks have pain in both arms, both sides of my neck and both legs, along with intermittent back pain and unusual (for me) fatigue. Onc says I can take a 6 week "vacation"  to see if the femara is the cause of all of this. (Then resume).

    I am so excited! Hoping to have a week or two of  feeling good. Anyone take a vacation - how long before SEs lessen?

  • jacee
    jacee Member Posts: 1,384
    edited October 2012

    Mary, I took a few weeks off recently. My Onc said a few weeks wasn't enough for s/e's to go away...said I wold need 3 months off to tell any difference. maybe someone will come along that had different results.

  • cp418
    cp418 Member Posts: 7,079
    edited October 2012

    I took a mini-vacation early this year and it took a full 3 weeks before I realized I was without pain.  It was an incredible feeling to recognize for the first time that I was without chronic constant pain as I had been trying to tolerate it for so long. I went a total of 8 weeks off before restarting Femara and within one week I was right back to my previous pain and body issues.  I hate these drugs.

  • Ginger48
    Ginger48 Member Posts: 1,978
    edited October 2012

    I have been off it almost 3 weeks and notice a huge difference in pain and no longer feeling like a 90 year old. Just a few days ago I realized I am getting up and down off the floor of my classroom so much easier. I am off it till I see my Onc after Christmas.

  • jacee
    jacee Member Posts: 1,384
    edited October 2012

    Cp4 and Ginger...that is encouraging to hear. I still have 2+ years to go though!!

  • Ginger48
    Ginger48 Member Posts: 1,978
    edited October 2012

    Jacee- I have only been on it for 10 months so I have a long way to go too. Dr wants me off it to see if my problems are auto-immune disorder related or drug SE. we'll see...

  • Eph3_12
    Eph3_12 Member Posts: 4,781
    edited October 2012

    I took a self-imposed vacation last year for about 6 weeks.  my SE seemed to subside fairly quickly.  I restarted on Jan 1 '12 & I am very happy to say that most of my SE did not come back & the ones I have I attribute to wear & tear more than a Femara effect.

  • Seashellie
    Seashellie Member Posts: 152
    edited October 2012

    I haven't taken my Letrozole in 3 nights and have already noticed a huge improvement. I'm moving easier in my joints and muscles, my major complaint of diarrhea is gone as of today as well!! I was prescribed a blood pressure med (diuretic) 3 days ago as well as 600 mg of Magnesium at night so am taking that into serious considertion!! Wow. Didn't realize that AI's depleted us of magnesium, increased BP and how important it is for us! I think the Magnesium has made a HUGE difference for me so far! Will go back on Letrozole in a few days and see what other short term differences I notice. Doing my own "study".

  • Cher56
    Cher56 Member Posts: 187
    edited October 2012

    Day thanks for all your hard work looking for those links. Do you have RA? as you mentioned your Rhuemy Doc. I too have it, been on pregnisone for 5yrs, but was on HRT so Osteoporosis was held at bay.. but,... now.. after Dec I'll be starting Lev, and am scared spitless honestly ladies, some say.. oh but you may not have many SE's. but ALL the Drs & MO have given me fair warning that with my RA/FM/OA/CFS & back problems I'm in for a ride. I just really need to loose this big belly & tighten up the core, but am so crapped out with the chemo right now, the 2 walks a day is as much as I can muster. Of course I'll go on it, but like you, I'm not going to let a pill kill me.. (have to wait until Jan 2014 to get another bone density scan). 

    enjoy your sweetie coming home!

  • gardengumby
    gardengumby Member Posts: 7,305
    edited October 2012

    My oncologist actively discouraged me from taking a vacation from the stuff, so I'm going to keep on keeping on for at least awhile - four more years to go for me.  My hair really got bad, though, so it got chopped this weekend.  I've had long hair for most of my life, and I keep feeling for it.  Kinda weird. 

  • Cher56
    Cher56 Member Posts: 187
    edited October 2012

    I totally lost the thread where Day posted 1 link for the Study on the 5yr Femara .. anyone help? thanks

  • spicedlife
    spicedlife Member Posts: 182
    edited October 2012

    Hi everyone, I am jumping in the middle to say hello and that I have been on Femara for four weeks now and I was freaking out about side effects but other than a sore lower back a couple of times, I have not had any.  I pray it stays that way.  I have my phase 2 Diep surgery next Monday and hopefully that will finish out my year of breat cancer. 

    Love to you all. 

  • chrissyb
    chrissyb Member Posts: 16,818
    edited October 2012

    Hi Jenny sure hope you stay SE free! Sounds like you've made a great start. Good luck with your surgery on Monday! I know you will be looking forward to the longest year ever.



    Love n hugs. Chrissy

  • Shrek4
    Shrek4 Member Posts: 1,822
    edited March 2013
  • Momine
    Momine Member Posts: 7,859
    edited October 2012

    Blech! Day, it sounds like you really got the raw end of the deal.

  • Shrek4
    Shrek4 Member Posts: 1,822
    edited March 2013
  • mary5454
    mary5454 Member Posts: 89
    edited October 2012

    Thanks all for the feedback. Am hoping for at least a week or two of feeling good before restarting. Am also interested in the study that Cher referenced re: 5 years of Femara...my onc says he hasn't seen the results yet.

  • Shrek4
    Shrek4 Member Posts: 1,822
    edited March 2013
  • nanna
    nanna Member Posts: 174
    edited November 2012

    Having trouble with my heels and wrist going get shot in them next week. Will be glad when i can go off this  femara. Which will be 13months and 10 days.

  • chrissyb
    chrissyb Member Posts: 16,818
    edited November 2012

    Nanna have you asked to change to one of the other AI's? Sometimes changing gives you relief from the really bad SE's and well worth talking to your onc about.



    Love n hugs. Chrissy

  • Cher56
    Cher56 Member Posts: 187
    edited November 2012

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