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Self imposed Letrozole vacation

1surfermom
1surfermom CSN Member Posts: 396 Member
in Breast Cancer #1

Hi everyone

I've decieded to put myself on a vacation from Letrozole without the approval of my oncologist. I'm usually a person who follows rules to the letter but I've been having some unusual side effects. I've been taking the medication since August and around November I started having what I think are slight seizures. It happens in the morning at about 10:30 AM. I feel a tingling in the fingers in my right hand it moves up my arm and then I feel it in my sinuses. I sort of feel numb for just about a second. The episodes where few and far between but lately they were becoming more frequent and I would have a laspe of short term memory. For example I had one the day after Mother's day and I had to ask my husband why were their flowers in my house. Since I've stopped I haven't had any problems. I'm scared that it maybe something else.  Has this happened to anyone else? What do you think ?Love Surf

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Comments

  • HapB
    HapB CSN Member Posts: 527 Member
    #2
    1SurferMom

    Hi. I am wondering whether you took your BP when you had those attacks? I had to go off Letrozole becaue I could not walk without a walker after a month. I could not get in and out of a chair, drive, or get up and down from the toilet. It as horrible. I am going tot ry another AI soon, but not bery hopeful because the doctor says it is similar to Letrozole.  Not good. 

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  • 1surfermom
    1surfermom CSN Member Posts: 396 Member
    #3
    Thanks HapB

    Do you think it is something to do with blood pressure ? I suspected that too. Because I have lymphnodes removed from both sides the medical assistants at my oncologists office take my BP on my ankle and it is always super high. When I saw my general she did take my BP on my right arm and it was normal. I am wondering if this is more stress than Letrozole related but.... I really like the way I feel off the the Letrozole. Thanks for your advice. Love Surf

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  • HapB
    HapB CSN Member Posts: 527 Member
    edited June 2018 #4
    1surfermom said:

    Thanks HapB

    Do you think it is something to do with blood pressure ? I suspected that too. Because I have lymphnodes removed from both sides the medical assistants at my oncologists office take my BP on my ankle and it is always super high. When I saw my general she did take my BP on my right arm and it was normal. I am wondering if this is more stress than Letrozole related but.... I really like the way I feel off the the Letrozole. Thanks for your advice. Love Surf

    SurferMom

    I was on Letrozole in the fall and after a month, I couldn’t even walk or sit. It was so, so bad. I went off it and felt better in a matter of weeks. It is probably the Letrozole, for sure. Do you know your numbers on how much it is needed?  I am going to try Anastrozole tomorrow.....but I keep putting it off each day. So hard!  It does feel great to be off everything, but a little scary. 

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  • Apaugh
    Apaugh CSN Member Posts: 850 Member
    #5
    concerned

    Have you talked with your doctor's about this?  It may be a side effect however, leave no stone left unturned. 

    Prayers,

    Annie

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  • Teach76
    Teach76 CSN Member Posts: 354 Member
    edited June 2018 #6
    Letrozole break

    Hi, Surf. . and friends.

         Last year after being on Letrozole for 18 months I took a break a month before my daughter’s wedding.  I was concerned about my next mammo, but everything was just fine.  My second daughter is getting married in July, and I will again be taking a break.  The AI stops the production of estrogen, and I felt that if nothing is showing up, a short break would not hurt.

         I must say that the decrease in side effects was great, but they did come back in full force when I returned to taking the Letrozole.  Could we be taking more chemicals into our body and causing additional damage for 5-10 years?  Maybe. . . I often wonder if being checked every 6 months/ year and beginning AI if a tumor is found would be enough.  Then I remind myself that there are many more cases that were studied in the research, so I rely on the advice of my team.

     

         I can share that the Letrozole has raised both my blood pressure and cholesterol, so “ here are more chemicals to eat at your liver to control those, too.”  It will be interesting to see what happens to those when I take my break.  I will be seeing PCP and will insist on cholesterol level being checked.  If normal I will definitely prove that the AI is to blame.  I do not vary much in my diet, so the only other factor would be STRESS - oh, I forgot, that is never considered a factor.

       Peace to all!

      Kathy

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