Letrozole/Femara

Jazz88
Jazz88 Member Posts: 13 Member
in Breast Cancer #1

Good Morning,

I have just been prescribed Letrozole/Femara for the senond time.  I was not able to tolerate it several years ago but they are hoping it will be different this time to get me off of tamoxifin. They said I need to see if I could ramp up my Calcium and Vitamin D.  Last time I tried it i had bone and joint aches so bad I could hardly get up.  I am only 50 and ususally very active was wondering if anyone had some advice that might be helpful as I try it for a second time? I do take calcium now but am not sure how much I should be taking and how much Vitamin D will make a difference. Thank so much

 

Comments

  • Apaugh
    Apaugh Member Posts: 850 Member
    edited December 2017 #2
    ask the doc

    My onc told me exactly what doses of calcium and Vt. D to take.  I was on arimidex and it played havoc on my bones and joints.  now he flipped me to tomoxifen because it is suppose to be a little (not much) on my bones and I had a total hystrectomy years ago so that wont be a worry. 

    In all honesty, I dont think there is one that dont give you side effects.  From what I have read from others, they all suck.

    Good luck,

    Hugs,

    Annie

  • Beepositive
    Beepositive Member Posts: 259 Member
    edited December 2017 #3

    Hello Jazz

    I am Taking Letrozole since march of this year (about 6 months )..mostly bone and joint pain (stiffness) when I first get and and when I set for long periods of time . my ONC did increase my calcium and vit D intake. so make sure you check with your Doctor on amount you need to add daily....so far so good for me .I always get on my treadmill each morning for about 20min that really help loosen up my musles.....things could be a lot worse.....IM BLESSED  (everyone system is so different)

    Best wishes to you!!!!

    Beepositive  Cool

  • Teach76
    Teach76 Member Posts: 354 Member
    #4
    Amount depends on many factors

    I was initially on Arimidex, but allergic complications moved me to Lertozole last January.  I suppose like any other drugs or supplements there are many factors that play into the amount we need.  Calcium. D3, etc. may depend on age, weight, and why you might need these supplements.  I completely agree with Beepositive that movement plays a huge part in dealing with side effects.   If I sit too long, or find myself standing through a double class period, my body lets me know that I either need to move or need to rest a few minutes.  With some experience, we all come to recognize our personal signals.  

    Kathy

  • Kats2
    Kats2 Member Posts: 126
    #5
    Calcium needs to be checked

    Jazz88,

    Do you have periodic bloodwork done by your Oncologist? If so, your Calcium, Vitamin D should be checked. I was taking supplemental Calcium and my level was getting too high. My Oncologist told me to stop the Calcium immediately. I’m also on Letrozole. What drug is Femara? I’m on Ibrance with Letrozole.

    Also, if your Oncologist really feels that you do need the Calcium and D, he/she should be telling you directly how much of it to take each day. That’s their job. How are you supposed to know the proper dose?

    Hope these suggestions help. Good luck!    Kats2

  • Teach76
    Teach76 Member Posts: 354 Member
    #6
    Kats2 said:

    Calcium needs to be checked

    Jazz88,

    Do you have periodic bloodwork done by your Oncologist? If so, your Calcium, Vitamin D should be checked. I was taking supplemental Calcium and my level was getting too high. My Oncologist told me to stop the Calcium immediately. I’m also on Letrozole. What drug is Femara? I’m on Ibrance with Letrozole.

    Also, if your Oncologist really feels that you do need the Calcium and D, he/she should be telling you directly how much of it to take each day. That’s their job. How are you supposed to know the proper dose?

    Hope these suggestions help. Good luck!    Kats2

    Femara

    Femara is the Brand drug = Letrozole.

  • jar
    jar Member Posts: 1
    edited December 2017 #7
    femara

    I stayed on femara or arimidex for 5 years had all kinds of problems with joint and bone pain.......Since coming off had a stroke and now diagnosed with rhuematoid arthritis.   Was quite healthy before b.c. with joints and all.  wondering if anyone else had ongoing joint issues after femara treatment stopped.  getting ready to do physical therapy again........

  • HapB
    HapB Member Posts: 527
    #8
    Calcium and vitamin D

    It has been all over the news that the conclusion of several studies show that calcium and vitamin D have no effect on bone density. The AI‘s cause osteoporosis, so another solution has to be found to protect bones. 

    As far as going back on Letrozole, I have one word for me...NO! 

    I hope you do better than I did.

  • DRios
    DRios Member Posts: 2
    edited January 2018 #9
    Letrozole

    Hi Ladies,

    Found out I had breast cancer in August 2017...finally a bilateral mastectomy in Nov 2017.

    Just rec'd my first prescription for the Letrozole, very apprensive in starting. Hate taking drugs. I'm now a 4 cancer survivor.

    Had thryoid cancer twice, basal cell carcinoma on my face then breast cancer.

    And today I just put on a bra with my knitted knockers!!!

    Any feedback is appreciated....

  • DRios
    DRios Member Posts: 2
    #10
    HapB said:

    Calcium and vitamin D

    It has been all over the news that the conclusion of several studies show that calcium and vitamin D have no effect on bone density. The AI‘s cause osteoporosis, so another solution has to be found to protect bones. 

    As far as going back on Letrozole, I have one word for me...NO! 

    I hope you do better than I did.

    Letrozole

    Can you explain why you are saying NO to Letrozole?

    Thanks!

  • 40Alive
    40Alive Member Posts: 2
    #11
    ?Letrozole

    I have been taking Letrozole since August 2017.  The first few months I really didn't notice much for side effects except for losing my hair (thankfully I had a lot to begin with) and stiff hands.  However since December, the stiffness has spread to other joints but my hands aren't too bad now.  Do you see the side effects come and go and change the longer you are on the medication?  I'm just beginning my journey as I will have surgery and radiation in a few months as the onc and surgeon wanted to do Letrozole first to see how my tumor responded.

  • HapB
    HapB Member Posts: 527
    edited January 2018 #12
    DRios said:

    Letrozole

    Can you explain why you are saying NO to Letrozole?

    Thanks!

    Why?

    I was on it and could not walk, sit, drive, move and ended up in the ER twice the pain got so bad.  that is why! 

  • Beepositive
    Beepositive Member Posts: 259 Member
    #13
    Drios REPLY

    hello Drios...as with all medications it has a different effect on everyone because our bodies react soo different to medications depending on your age and other meds you are taking..i know people with little side effects who are taking Letrozole. but as with everything PLEASE consult with your doctors..we can only give our experiences .

    PRAYERS AND HUGS TO YOU!

    bEEPOSITIVE

  • denaporter
    denaporter Member Posts: 10
    #14
    I am also on letrozole and I

    I am also on letrozole and I am in the worst pain. I can barely walk if I have sat down for 5 minutes and my whole body aches. I am now having to raise my 3 year old grandbaby and considering stopping the meds. 

     

  • Teach76
    Teach76 Member Posts: 354 Member
    #15
    Letrozole SE

    Being on Letrozole for 14 months I am still finding out effects that no one mentioned.  I realize the Internet can be a terrible, frightening source for us sometimes, but it can also be a source of information that we do not get elsewhere.  Over the last 6 months I have been placed on Lipitor for cholesterol, my blood pressure continues to be high, and now Lexapro has been added for anxiety.  Online research shows that Letrozole affects all of these.  I did not experience these issues initially.

    In September I had stopped the Letrozole a month before my daughter's wedding so that I could enjoy the day without joint pain and looking as though I needed to borrow a guest's walker or cane!  I had wondered what my SE would be once I resumed meds.  My hands were terrible - especially overnight, walking after sitting longer than 20 minutes was painful, and the anxiety began.

     

    PCP wanted me to go back to Onco or surgeon to see if I could stop the AI.  Since I was told 10 years, I responded, "No way will they let me stop."  Then I mentioned the research as to how Letrozole lowers seratonin in the brain - BINGO - take another drug (Lexapro) to combat that.  Is it all worth it?  Well, I am here.  Might I be damaging something else in my body? Maybe, but I have to function for my family and job.  We make many choices for our treatment, with the unknown always in the future.

    Accepting the gift of today, and always hoping for a better tomorrow!

    Prayers and peace for all,

    Kathy

  • denaporter
    denaporter Member Posts: 10
    #16
    Teach76 said:

    Letrozole SE

    Being on Letrozole for 14 months I am still finding out effects that no one mentioned.  I realize the Internet can be a terrible, frightening source for us sometimes, but it can also be a source of information that we do not get elsewhere.  Over the last 6 months I have been placed on Lipitor for cholesterol, my blood pressure continues to be high, and now Lexapro has been added for anxiety.  Online research shows that Letrozole affects all of these.  I did not experience these issues initially.

    In September I had stopped the Letrozole a month before my daughter's wedding so that I could enjoy the day without joint pain and looking as though I needed to borrow a guest's walker or cane!  I had wondered what my SE would be once I resumed meds.  My hands were terrible - especially overnight, walking after sitting longer than 20 minutes was painful, and the anxiety began.

     

    PCP wanted me to go back to Onco or surgeon to see if I could stop the AI.  Since I was told 10 years, I responded, "No way will they let me stop."  Then I mentioned the research as to how Letrozole lowers seratonin in the brain - BINGO - take another drug (Lexapro) to combat that.  Is it all worth it?  Well, I am here.  Might I be damaging something else in my body? Maybe, but I have to function for my family and job.  We make many choices for our treatment, with the unknown always in the future.

    Accepting the gift of today, and always hoping for a better tomorrow!

    Prayers and peace for all,

    Kathy

    YES!! I cant pull the covers

    YES!! I cant pull the covers up at night because my hands hurt so bad and picking up my granddaughter is torture. My feet! Well lets just say I walk like an OLD OLD lady I guess lol. I work full time and now a grandbaby and the depression is awful. I am taking Pristiq for that and I can only imagine what I would be like without it.I am really feeling that I want to get off of it. 20 years like this is not worth it. 

  • Beepositive
    Beepositive Member Posts: 259 Member
    #17
    Letrozole

    Helllo All as I said in Dec about in my comments i have been taking Letrozole since 3-2017 bone and joint pain in legs especially when I first get up and sat for long period of time. I walk treadmill first thing in mornings and that helps a lot.  my onc dose have me taking more calcium and vit D .  Please check with your doctor on how much they want you to take....everyone body is different..PRAYERS AND BLESSINGS TO ALL!!!

    BEEPOSITIVE   Smile

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