Herceptin 8 1/2 years now Tykerb

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cher4life
cher4life Member Posts: 4
edited June 2014 in HER2+ (Positive) Breast Cancer

I have been on Herceptin for 8 1/2 years with bone mets and have been stable all this time. Now mediastinal lymph node is suspicious for mets and will have biopsy in a couple of days. Any one have a biopsy of this type of lymph node? also I will go on Tykerb if it is still Her2Neu positive. I am 14 years out with 16 positive lymph nodes out of 25. Have been doing great but now this lymph node thing has me a bit shaken....would love to hear good stories of this type of spread.

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  • jan125
    jan125 Member Posts: 411
    edited April 2007
    Wow!!!!!!!!!!!!!!!! You have no idea how much you brightened my day. I love to hear 8.5 years with mets and herceptin. Plus new things are coming everday!!!
    Best wishes. You will do fine!!!!!!!!!!!

    Jan
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  • lkc
    lkc Member Posts: 1,203
    edited April 2007
    Hi,
    Can't give you any help with the lymph node, however I just found out something really interesting from my onc.
    He told me that it has been found ( at least so far ) that women, who responded to herceptin, the went on to Tykerb.
    COULD eventuallu GO BACK on Herceptin, and it will work!!!
    Also there is a new drug they are curently doing sstudies on which is called the super charged Herceptin, which is Herceptin with additional " blocking agents "
    Hope this helps,

    Linda
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  • DEAK95
    DEAK95 Member Posts: 121
    edited April 2007
    Hi,
    I am only 11.5 yrs out but only 1.5 out as StageIV w/ bone mets. I've been on Herceptin for 13 mos since it was started later and I skipped 5-6 for travel (Very Helpful!).
    I may soon have to stop my weekly Rx since my MUGA Scan has now hit the 50% threshhold. I have a few more mos before we scan again (3 instead of 6 )but feel better after he also stated that you could return to Herceptin after a break with good success!!!! Best of Luck to you for your biopsy as I also have had an enlarged Mediastinum lymph node. It is normal for now but I always look for others about this and the Hilar lymph nodes. You might want to title a post on the "metastatic Section" about this "Mediastinum lymph node biopsy ??? I'm sure you will get many responses for that part of your ???Yes, it is inspiring to hear about your success of kicking butt of this BC. Pat
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  • tlcintexas
    tlcintexas Member Posts: 4
    edited April 2007
    I had heard that you could not go back on Herceptin. This is really good news to me if you can go back. I have read about the super charged Herceptin. It would be nice to have something to go back to. My doctor wants to move me to Tykerb and I am scared that if that stops working I would have nothing to use. Thank you for the post. Did you see this in a particular website or just your oncologist? Are you taking Tykerb already? I am wondering about the side effect etc.
    Thanks
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  • lkc
    lkc Member Posts: 1,203
    edited April 2007
    Hi again,
    What my onc said was preliminary data was showing that pts were responding to Herceptin after going off and then on Tykerb.
    Nothing official out there as of yet.
    Linda
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  • cher4life
    cher4life Member Posts: 4
    edited April 2007

    Thank you for the positive reply and the information on Herceptin and Tykerb and then going back on Herceptin!

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  • cher4life
    cher4life Member Posts: 4
    edited April 2007

    Keep me posted on your enlarged mediastinal lymph node. I had my biopsy the other day and am awaiting results.

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  • cher4life
    cher4life Member Posts: 4
    edited April 2007

    Wanted you to know that my Muga was a little below 50 and then had an echo and it was 50 - 55 and I have been at this for about 2 years now and continue on Herceptin.

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  • tlcintexas
    tlcintexas Member Posts: 4
    edited May 2007

    Have you started the Tykerb? How are you doing with the side effects and what if anything are you doing to combat them? I am having diahrea and am taking immodium but not sure fi there are some other good things to be doing.

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  • CTG
    CTG Member Posts: 143
    edited May 2007
    Tlc in Texas,
    Hello, are you on Xeloda and Tykerb? There are things you can do to combat the diarrhea. There is diet control eating foods like white rice, baked potato not the skin, white pastas. Ask you doctor for a diet plan to help. There are prescription drugs to help diarrhea such as Lomotil. Ask you doctor for the prescription. You must be careful to keep hydrated as diarrhea can cause you to have dehydration. I take my Tykerb before I go to sleep. This seems to help lower the side effects.

    Hugs
    CTG
    dx fall05 stage4 liver and bone mets
    dx fall06 brain mets / spring07 brain mets gone
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  • Fitztwins
    Fitztwins Member Posts: 7,969
    edited May 2007
    8 1/2 years!!! impressive. Sister I have a feeling that Tykerb will do well for you too. Herceptin has been your miracle drug for sure!!

    Prayers and positive thoughts that it works for you.

    Janis
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  • josied0
    josied0 Member Posts: 66
    edited May 2007

    I have been away for a while and have some questions to post....but I just wanted to say....Wow....you are well just so impressive...you keep going move forward you cannot worry make the choices out there.....you can do it fists up.....JoAnna I am rooting for you

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