Info. about Tykerb

littleangel65
littleangel65 Member Posts: 46
in Breast Cancer #1

I am getting ready to finish up on my Herceptin treatments, and now my oco. is talking about putting me on Tykerb, he says he is using this, because of the type of breast cancer I have, more often than not goes to the brain, and that this medicine works as a barrier, to help keep my cancer from possibly spreading to the brain.

My question is, is there anyone out there, who has, or is on, Tykerb, and let me know if they have experienced any side effects, and how long do you have to take this medicine?

Comments

  • camul
    camul Member Posts: 2,537
    #2

    but what kind of bc do you have?

  • camul
    camul Member Posts: 2,537
    #3
    double post,,,,

    sorry

  • 1surfermom
    1surfermom Member Posts: 396 Member
    #4
    Tykerb

    I took Tykerb as part of a clinical trial in 2009. I think I took it for about 3 months. I really didn't have any issues with it except occaisional diarrhea, I was also receiving taxol so it could have been the taxol. All in all I really did not have any side effects with it except that my fingerprints have faded (Isnt that weird?).  I do remember having to take it on an empty stomach so the timing of it was some times a pain. If you would  like more information just let me know . Love surf

  • jnl
    jnl Member Posts: 3,869 Member
    #5
    camul said:

    but what kind of bc do you have?

    I wish I could help, but, I

    I wish I could help, but, I don't know anything either about it.  I do however want to wish you the best of luck on it.

    Hugs, Leeza

  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    #6
    I don't know anything about

    I don't know anything about Tykerb (chemocare.com has been a great resource for me).  But I had brain mets. and I have some lingering issues from the whole brain radiation used to treat my brain mets.  So for me, even if Tykerb has some icky side effects, I would have taken it.  Will your doc do a baseline brain MRI before starting Tykerb?  I would want one of those too.

    Hugs,

    Linda

     

     

  • littleangel65
    littleangel65 Member Posts: 46
    #7
    camul said:

    but what kind of bc do you have?

    Hello

    I have double negative, HER2 positive breast cancer, stage 3. 

  • littleangel65
    littleangel65 Member Posts: 46
    #8
    1surfermom said:

    Tykerb

    I took Tykerb as part of a clinical trial in 2009. I think I took it for about 3 months. I really didn't have any issues with it except occaisional diarrhea, I was also receiving taxol so it could have been the taxol. All in all I really did not have any side effects with it except that my fingerprints have faded (Isnt that weird?).  I do remember having to take it on an empty stomach so the timing of it was some times a pain. If you would  like more information just let me know . Love surf

    Hello 1surfermom

    Thank you, the way my doctor was making it sound, I would have constant diarrhea.  But I am looking positive, so far, I have really reacted well to my treatments.

    I had surgery last year, had my right breast taken, along with 18 lymph nodes, 4 of them were positive, then 4 rounds of chemo, 33 rounds of raditation, and 17 rounds of herceptin, which I am about to finish my herceptin treatments, and when that is completed, that is when my doctor wants to put me on the Tykerb.

    I also had to have my uterus taken out during my surgery, it was grossly enlarged, thank God, it was fibroids, and not cancer, but they were very concerned about that, my uterus was the size of a 6 mo. pregnant woman, my surgeon said that it compared also to that of a bowling ball.

    I am so happy that you responded, I was begining to think I was the only one out there...

    I hope you are doing well!!!!!  That is weird about your fingerprints fading, but with cancer treatments, nothing should suprize me, I am just so grateful that there has been advancements on cancer treatments.

    Right now, I do complain about aches and pains in my joints, it was in my knees and ankels, now the last few days  the pain is in my pelvic bone area, I've talked to other women who have taken the herceptin, and they say that the doctors don't agree that the herceptin causes these pains, but what else could it be?

    My doctor thinks that if I was to suffer any pain, it would've been in the early treatments of herceptin, well, every persons body is different from one another, and this is how my body is reacting, so....  Oh well, as long as we survive, I will live with occasional pain here and there.

    Thank you again for your response, stay well, stay strong!!!!

     

  • littleangel65
    littleangel65 Member Posts: 46
    #9
    Gabe N Abby Mom said:

    I don't know anything about

    I don't know anything about Tykerb (chemocare.com has been a great resource for me).  But I had brain mets. and I have some lingering issues from the whole brain radiation used to treat my brain mets.  So for me, even if Tykerb has some icky side effects, I would have taken it.  Will your doc do a baseline brain MRI before starting Tykerb?  I would want one of those too.

    Hugs,

    Linda

     

     

    Hello Gabe N Abby Mom

    so sorry to hear that you had to go thru that.  I am glad to hear that you are still with your family, and hanging in there.  Thats what counts.

    I am assuming my doctor will prolly do a baseline brain MRI before we go thru with the Tykerb, the way he explained it to me, with the type of cancer I have, more often than not, it does travel to the brain, and now that Tykerb is available for patients, this may just keep the cancer from traveling to my brain, since no other meds out there can protect the brain.

    I was just dx in Jan. of 2012, not very long ago.  No one in family has cancer, that I am aware of for the past 3 generations, so this was a total shock to me, I don't smoke, don't drink, never did drugs, I am so what over weight, but do eat healthy for the most part, just bigger portions, lol.

    Now, my daughter, who is 25, just a had our first granddaughter, and the told her, that she needs to have a biopsy, they found some abnormal cells in her cervix, she has no insurance, and medicaid doesn't pay for that in Missouri.

    So, I have been trying so hard to not stress about anything anymore, and this came up, I am so scared for her, hopefully it won't be anything, but now with me having cancer, its in the family I guess.

    I did do a genetic test, and according to the test, I haven't passed this on to my daughters, but still I worry about that.

     

    Hope to see you again on here, take care, stay strong girl!!!

    Linda

     

  • littleangel65
    littleangel65 Member Posts: 46
    #10
    jnl said:

    I wish I could help, but, I

    I wish I could help, but, I don't know anything either about it.  I do however want to wish you the best of luck on it.

    Hugs, Leeza

    TY

    TY

  • gazyk
    gazyk Member Posts: 1
    #11
    Tykerb/xeloda

    HI 

    i just started tykerb/xeloda this week as a secondary treatment phase. Sicne TDM1 didn't work for me.  How long does tykerb/xeloda taakes to start working, i have a lump in my breast that i could feel but hoping that it shrinks now already.....  i have been taking medicine for 4 days.:)

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