Temodar for brain mets

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ablue
ablue Member Posts: 26
edited November 2018 in Stage IV/Metastatic Breast Cancer ONLY
Temodar for brain mets
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  • ablue
    ablue Member Posts: 26
    edited June 2008

    Hello I am new to this board. My mother was dx with stage IV breast cancer with mets in liver and bones. Recently just found brain mets. I was reading some other post and saw people mention temodar and tykerb to treat brain mets. I wanted to know if this has helped anyone with brain mets to reduce or stabilize the mets. Does this work on its own or does it have to be used with another treatment?

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  • LuAnnH
    LuAnnH Member Posts: 8,847
    edited June 2008
    tykerb is supposed to be a good mix with xeloda and temodar can be used by itself.  On www.bcmets.org, you can look up pattyz in the archives and you will see she has been on temodar quite a while now by itself.  The other mix WendyV is on right now and I know there have been others on it but I can't think of who they are right now.
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  • ablue
    ablue Member Posts: 26
    edited June 2008

    Thank you LuAnn for your help. I have been on the bcmets.org site and have read and emailed several of the women.

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  • luckywife
    luckywife Member Posts: 427
    edited June 2008

    ablue,

    Pl. checkout http://brainmetsbc.org/ website sprcifically on brain mets in brain cancer patients. A lot useful in fo. re: symptoms, treatments, clinicals trials ets. can be found there.

    There are patient advocates there who will answer questions too.

    Good luck.

    -luckywife  

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  • ablue
    ablue Member Posts: 26
    edited June 2008

    Thank you luckywife. I did not know there was advocates on the brainmetsbc.com I will have to find them becuase we have so many questions.

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  • LumiPojo
    LumiPojo Member Posts: 1,677
    edited June 2008

    I can't help with any info, but am sending lots of hugs and prayers your way.

    {{{ablue}}}

    Lumi.

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  • ablue
    ablue Member Posts: 26
    edited June 2008

    Thank you Lumi for your prayers and hugs. It really helps.

    ablue

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  • SpunkyGirl
    SpunkyGirl Member Posts: 1,568
    edited June 2008

    I'm one of the people you probably heard mentioning Temodar.  My husband took it for over two years for primary brain cancer, and he is doing great five years after diagnosis.  I really think the Temodar is the reason.  Good luck with taking care of your mom and helping her to be well.

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  • ablue
    ablue Member Posts: 26
    edited June 2008

    Thank you so much for that information SpunkyGirl.

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  • hhfp
    hhfp Member Posts: 51
    edited November 2018

    Wondering if anyone else has had success using Temodar to treat BCBM....

    Also, seems there is a clinical trial using T-DM1 and Temodar to prevent future BCBM.

    https://clinicaltrials.gov/ct2/show/NCT03190967

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  • Daniel86
    Daniel86 Member Posts: 271
    edited November 2018

    Hey man,

    I remember you saying you couldnt get temodar approved through insurance for your wife. I think you mentioned somewhere (or maybe it was just my imagination, idk) y'all are based in the UK. have you given trying abroad a thought? Until British insurance is part of the EU system, you might be able to get coverage somewhere else for the drug. Ireland, Germany, Malta? Also, did you research anything related to proper brain cancer treatments?

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  • hhfp
    hhfp Member Posts: 51
    edited November 2018

    Oh, update, not sure what happened, but it was a prescription and the oncologist did put it through to the specialty pharmacy - insurance did not need to review it. Going to start today. Dosage is to take it daily for 5 days every 28 days (so 5 days on and 23 days off).

    My wife has BCBM, not brain cancer. We are rolling the dice hoping that Temodar works on her brain mets. Running out of treatment options... :(

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  • Daniel86
    Daniel86 Member Posts: 271
    edited November 2018

    best of all to you guys. We are rooting for you. Keep us in the loop.

    Daniel

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