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FEMARA

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Comments

  • Linda-Ranching-in-the-mTns
    Linda-Ranching-in-the-mTns Member Posts: 96

    Howdy all -- Just checking in after a long hiatus from the boards -- I got married (!) June 14th of this year -- first time for us both -- and it was (and is :) so cool! I am happier than I have ever been in my life, and that has honestly been the case ever since my diagnosis and surgery -- who could have thought that possible?

    Anyway -- the reason I am posting is that in the past I have always said "I don't have any 'real' SE's" -- (started Letrozole 20 months ago). Well, I am changing my tune after going off the drug for 6 weeks during the wedding and honeymoon (we got married out-of-state and honeymoon out-of-country, and I just didn't want to lug around all my supplements and pills through airports, etc).

    About a week after going off everything (Letrozole, vit E, vit D3, calcium, magnesium, glucosamine, multi-vitamin, fish oil, etc etc etc) I noticed that my joints were less achy. Not that they had been a big problem, and I am 59, so hard to tell sometimes what is just age and what is SE -- but my ankles especially hurt less and seemed more flexible. Also, after a couple of weeks (off Letrozole) I noticed that my trigger finger was completely gone! (if you don't know "trigger finger" it occurs every time you begin to bend that finger (in my case a thumb) -- it sort of feels odd and then rushes to bend, sometimes even making a popping sound). My experience of Letrozole is that it seems to make all the tendons and other connective tissues either dried out or somehow "less elastic" -- which is probably also what makes the joints sore (imagine your bones being pulled too closely together as they try to slide along each other). Hard to get down to the floor, harder to get up. General stiffness, especially after sitting for a while...

    Smaller changes while I was off Letrozole: more restful sleep (fewer hot-flashes and sleeping clear through the night without a bathroom break (which perhaps was simply caused by taking my meds at night with a full glass of water before getting into bed :) -- and less over-all stiffness and general slight feeling of "being old".

    But, then -- (Good Girl that I am) -- I started taking the pills again as scheduled -- and all the SEs that I have listed above came back with a vengeance, worse than before -- until my supplements could catch up again to mitigate the SE's -- which I normally only experience as a mild discomfort -- they never are really debilitating. (Magnesium helps sleep through the night and lessens any cramping, calcium, fish oil, and glucosamine are good for the bones/joints, vit E, D3 and all the rest help perk me up and give my body the building blocks to keep running as well as it can).

    The great thing in this "experiment" for me, though, is that I now have proof that I am not actually "getting old before my time" -- that these slight SE's will leave us when we stop taking the drug.

    SO -- if you are unsure if your "SE's" are actually related to Femara/Letrozole -- or just a consequence of healing from pretty invasive surgery and getting older -- you can always find out by taking a break for a few short weeks.

    But you might want to keep up the supplements, because they seem to take longer to rebuild again in the system to help counteract the SEs when you do go back on.

    My best to you all!

    Linda

  • MsPharoah
    MsPharoah Member Posts: 224

    Congratulations, Linda on your happy marriage and happy life.  Hooray!!  Thanks for sharing your experience because now I have hope that I will be able to get things on the bottom shelf and be able to get back up without assistance in the future!

    MsP

  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337

    Congratulations, Linda!  Wishing you a fantastic future together.  And thanks for the info on Lettrazole - I feel the same and have the "trigger thumb" thing going on.  One finger on my other hand was sore, but seems to be better lately.  And I'm taking Celebrex (or New Zealand equivalent) and it really helps, as do the supplements.

    I don't know about the others here, but I would love to see some wedding pics!

    Hugs to all,

    Terre

  • chrissyb
    chrissyb Member Posts: 11,438

    Congratulations Linda!!!  I wish both you and your new husband a long and happy life together!!  Thanks for the info on the SE for Letrozole/Femara, I'm sure the newbies who read will get great relief from the knowledge that the SE do go once they stop the drug.

    I'm with Kiwi, I too would love to see some wedding pics!

    Honeybair I'm pleased to hear that lat night you were cramp free!!!   Long may it last!!!!

    Love n hugs.   Chrissy

  • alaskamama
    alaskamama Member Posts: 28

    Linda, thanks for sharing the results of your accidental experiment. And congratulations on your marriage. It is inspiring to hear you are so happy!

    I thought I'd share the results of my own accidental experiment with Femara. I went on it December 2013 (before starting radiation because my oncologist was "disappointed" with my pathology report). It KICKED my butt. Radiation probably didn't help. I felt like my 42-year-old self had been body-snatched by a 90-year-old.  

    Then things spiraled downhill, and I'll spare you the sob story but I ended up in the hospital struggling with what became chronic inflammation of the heart sac. At the same time and apparently coincidentally, my ovarian function (i.e., my period) came roaring back, and because of everything going on it was not a good time for oophorectomy OR Lupron, so I took about six weeks off Letrozole. 

    When I went back on it, I did not wake up feeling like a crone!

    Wonderful, right? I thought I had somehow magically kicked the side effects the second time around. 

    Then I remembered something -- I was now on steroids (to control the inflammation). Steroids have lots of horrific side effects, some of which amplify Letrozole SE's (sweats, bone loss) but some of which counter them. I asked my rheumatologist and she said, Oh yes, the steroids are no doubt countering the soreness/fatigue/achiness of Letrozole, and the SE's will be back when you're off steroids.

    Morals of the story? The side effects are real. Steroids help counter them. There must be other (less dangerous!) ways of countering them. Keep sharing what works, please! Best wishes to all.

  • gardengumby
    gardengumby Member Posts: 4,860

    In addition to a host of supplements which I take to help counter as many of the SE's as possible, I also get regular acupuncture treatments and massage.  Recently my hubby and I also changed our diet and have cut out refined sugar, dairy, grains (yes - all grains), and potatoes.  My body seems overall less inflamed, and less sore - plus I've lost 9 pounds.  :)

  • chrissyb
    chrissyb Member Posts: 11,438

    Good for your GardenG!!  Loosing 9 pounds is a great bonus to get for making so many changes!!

  • Linda-Ranching-in-the-mTns
    Linda-Ranching-in-the-mTns Member Posts: 96

    Hey -- I just learned how to post photos! Thanks to all for the congrats -- :)

    image Charlie the dog was our ring bearer -- here he is stealing a kiss as Les ties the heart-shaped pillow with rings attached around his neck :)

    image

    image We both wore our cowboy boots! :)

    image we bought fairy wings for all the little ones to wear -- 

    image

    image

    image

    image

  • chrissyb
    chrissyb Member Posts: 11,438

    Linda what can I say!!   Gorgeous! Gorgeous! gorgeous!!!  I can feel the love and joy radiating from your pics..........what a fabulous wedding, just beautiful!  I love the idea of the fairy wings for the little ones and your ring bearer?  Just precious!!!

     Thank you for sharing your special day with us........may the days and years pass and bring you nothing but the mirrored joy of your wedding day.

    Love n hugs.   Chrissy

  • Linda-Ranching-in-the-mTns
    Linda-Ranching-in-the-mTns Member Posts: 96

    Chrissy, you are always such a loving and upbeat poster -- thank you for your kind words!

    I met this wonderful man on E-Harmony -- while I was living in Hospice with my lovely Dad as he died of stage 4 brain tumor. The last cognizant conversation I had with Dad -- I told him I wasn't doing too well picking men in my life -- and if, once he got to Heaven, he wanted to send a great guy my way... well, I would pay attention and let the man in.

    That very afternoon, Dad fell into a coma, and died several days later.

    I like to think that Dad was challenged by the opportunity to help,. and couldn't wait to get one foot into Heaven so he could get to work on finding me a man! 

    Because -- that afternoon is when Les showed up in my E-Harmony account... and we began communicating.

    About 6 months after Dad died -- I was diagnosed with my breast cancer. At this point Les and I were still just visiting each other (I lived in Kansas City, he lived out here in the mountains of New Mexico) but Les took me to the biopsy, and then whisked me to the ranch to await the results. When we got the phone call, he immediately took off work for the rest of the day and took me on a picnic in the woods.

    He held me and asked me what my worst fear was. 

    I said it wasn't cancer, because I had done that with Dad. 

    I said it wasn't death, because I had done that with Dad, too -- and I could see the beauty in it now.

    I told him I was most frightened of losing our wonderful budding love -- that the natural progression was (I thought) that if things kept progressing -- our love kept growing.. that he might be asking me to move to the ranch by the end of the summer... but with me getting surgery in Kansas City and recuperating there, and him working so many hours on the ranch.... we would be apart and I was afraid we would lose what we were building.

    Thats when he showed me what a truly great man he is -- he said, "Well ... cancer is part of the natural progression, too. I think you should move in with me now, if you want to -- and let me be your partner in this cancer adventure... "

    He was with me through everything. Bathed me and changed my dressings after the surgeries... lifted me in and out of bed when I couldn't do it myself (I had DIEP, which cuts both abdominal and pectoral muscles). Saw me through everything -- I have never been so honest and so open -- the man saw me more "naked" than I ever let anyone else get close enough to do. He proposed when we got my clean bill of health late last fall -- the engagement ring was the best Christmas present we ever could have given our little-old-lady mothers -- they are 87, and neither Les nor I had ever been married before -- everyone had sort of given up on us! :)

    Well, it just takes some of us longer than others to learn our lessons and truly get ready to love someone deeply like this!

    My sister married her E-Harmony honey, too :)

    Hope you all have a glorious day!

    Linda

  • Nash54
    Nash54 Member Posts: 699

    Linda what a beautiful story.  Thank you for sharing. You look absolutely radiant in your wedding pics.  Looks like love was well worth the wait.  I wish you a lifetime of happiness. 

  • Tomboy
    Tomboy Member Posts: 2,700

    So wonderful, Linda! Thanks for sharing!

  • MsPharoah
    MsPharoah Member Posts: 224

    Linda, blessings to you!  Your pictures made me happy.  You and your love deserve every happiness. 

    MsP

  • Nash54
    Nash54 Member Posts: 699

    p.s. Linda...you guys would make a great E Harmony commercial!!!

  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337

    Thanks for sharing your story and photos, Linda!  I love that Charlie was your ring bearer.  But mostly I love how radiant and happy you look.  Fantastic!!

  • honeybair
    honeybair Member Posts: 234

    Linda, thanks for sharing your wonderful wedding photos and your love story with us.  Both of you look positively radiant and filled with joy.  I met my husband when I was 59 and we married shortly after I turned 60.  
    We also met on an internet dating site and have enjoyed almost 10 wonderful years together.  He was the partner who brought me and stood by me last year throughout all my treatments.  Love can come at any age and what a blessing it is.  I wish you and your husband many years of happiness together.

  • Linda-Ranching-in-the-mTns
    Linda-Ranching-in-the-mTns Member Posts: 96

    Thanks for all the well-wishes :)

    And the foobs look pretty good, huh?  :)

    I am the happiest I have ever been in my life -- and have been for the last 3 years straight -- even through Dad's death and my own cancer surgeries. Love is a powerful drug! But part of it was also learning the skill of acceptance and appreciation... learning to focus on "the good stuff" even in the midst of what others might call "crisis". 

    Learning how to do that is also a blessing -- at any age!

    Thanks for asking for the photos -- it was fun posting them :)

    Linda

  • canuck46
    canuck46 Member Posts: 62

    Linda you are beautiful!  Thank you for sharing.  Wishing you many, many years of good health and happiness! 


     

  • Tomboy
    Tomboy Member Posts: 2,700

    Love the fairy kids, the look of sheer delight on the little one up in the air, the big smile on the face of the woman who married you two, and yeah!!! Those are some foobs you got going on there!!!

  • alaskamama
    alaskamama Member Posts: 28

    Thanks for sharing your story and the spectacular photos, Linda. Wow. I just want to add, you look especially gorgeous in glasses! Femara's got nothing on you!

  • eph3_12
    eph3_12 Member Posts: 2,704

    Linda, awesome story!  Makes me want to get an E-Harmony account!!!! Nah,,, well maybe a little bit but not enough to actually do it!

  • chrissyb
    chrissyb Member Posts: 11,438

    Linda your love story is one that should be written in a book!  How absolutely wonderful and inspiring! Yes, you are so right about love coming at any age, my youngest daughter married just last year for the first time at the age of 41 and is ecstatically happy as you are.

  • Linda-Ranching-in-the-mTns
    Linda-Ranching-in-the-mTns Member Posts: 96

    Eph3 -- Why not?

    I looked at your profile and you are in the home-stretch, Darlin"... time to get back out there and live life fully again! Everybody is different, of course, but for me life is always sweeter with some good lovin" in it! :)

    I'll tell you -- several things changed me deeply in my 40's-50's. Each thing was tremendously important in taking me from the disappointed (and complaining) woman I had become to the "radiant" and truly JOYFUL (and finally MARRIED!) woman I am today..

    One of the most important steps (for me) was my time on E-Harmony!

  • Tammy_M43
    Tammy_M43 Member Posts: 565

    Linda, your story has brought a tear to my eye....

    Eph3, give it a try....look at Linda and think maybe me!

  • honeybair
    honeybair Member Posts: 234

    Well, my tonic water drinking to prevent leg and foot cramps worked for 4 nights.  Last night, it was back to cramps again, both calf muscles and feet and ankles.  What to do, what to do?  I do not want to take a drug to prevent the side effects of Femara, though my MO said one is available.

  • MsPharoah
    MsPharoah Member Posts: 224

    Hello ladies, I have been reading this thread for some time.  Have taken Letrozole for about 1 year now.  Last month, my pharmacy notified me that the manufacturer of my medication changed from Sun Pharma to Apotex.  I didn't think anything of it until about a week ago when I noticed that my joint and thigh aches and stiffness have diminished significantly since the switch.  I think it may be very common that some SE  or severity of the SE's are coming from the fillers, but just doesn't seem logical.  Thoughts?

    MsP

  • virginiab
    virginiab Member Posts: 79

    I certainly had the experience of a change of generic drug manufacturer affecting symptoms. It may be partly due to the fillers. It may also be due to the letrozole itself as the generic manufacturers have to pass some testing with their drug showing bioavailability of the active ingredient is within 80% to 125% of the original drug. So just imagine if you go from one where your effective dose that actually gets into your blood is 80 or 85% to one that is 120% or 125%.  That's a big difference in dosage and could certainly cause more side effects. Or go the other way, to a lesser dosage and get a lot of relief!

    Herre's an article I read today about generics:

    http://www.bottomlinepublications.com/content/article/health-a-healing/what-s-really-in-that-generic-drug?

  • MsPharoah
    MsPharoah Member Posts: 224

    Virginia, Good lord!  So scary.  I love the fact that my new pills have fewer SE's but I don't want to sacrifice the protection of the medication for that.  I think when I refill, I will specify my old manufacturer and monitor to see if my SE's come back...then consult with my Dr about getting the name brand only.

    Thanks for the info.

    MsP

  • peaches12
    peaches12 Member Posts: 28

    Speaking of SE's with Letrozole.  I've been on it for 7 months with no major problems, but now my hair is really thinning.  It hadn't come in completely since I ended Herceptin in April and started letrozole, but I was out of my wig and baseball caps.  Now it has gotten very thin on top and back and I am devastated.  Even wore my wig out to dinner this weekend.  Feel like I'm going 2 steps forward and 3 steps back!  Any thoughts?

  • chrissyb
    chrissyb Member Posts: 11,438

    Peaches I've been on Femara for four years now and in the beginning my hair thinned terribly but I'm happy to say that it has come back, not fully as it still thinner than before but it is a full head covering.  

    Sometimes it's not necessarily the Femara/Letrozole that is the cause of this but the lack of estrogen......it sort of backs up that your meds are doing their job.  Have you ever noticed old women with thin hair?  Post menopausal and low  Estrogen and some women are affected more than others.

    Hope this eases your mind a little.

    Love n hugs.    Chrissy

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