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GSK BRAF with randomized MEK trial—then what?

Forums General Melanoma Community GSK BRAF with randomized MEK trial—then what?

  • Post
    mommydog
    Participant

    My husband has been on this trial at UCSF for 26 weeks now.  His tumors have been reduced by over 74% and have gone from a total of over 15 cm to slightly over 3 cm.  He has had 3 PET scans, and there has been improvement each time, although it has been less dramatic each time.

    My husband has been on this trial at UCSF for 26 weeks now.  His tumors have been reduced by over 74% and have gone from a total of over 15 cm to slightly over 3 cm.  He has had 3 PET scans, and there has been improvement each time, although it has been less dramatic each time.

    Although I am thrilled, I am concerned about all of the comments that this treatment causes only temporary results.  What is the plan b?  When do we know that it is time to pursue another course of action?  Is the BRAF/MEK treatment always just temporary?  Since 77% of the patients from the Roche trials are still living, how do we know this to be true?

    Thanks for any insight or advice.

    Deborah

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  • Replies
      killmel
      Participant

      Hi Deborah,

      I am a newbie. It is so great to hear your husband has such a great response on BRAF/MEK

      I am very interested in this Braf/MEK trial.

      1. Is the trial your hubsand on GSK or Roche sponsored?

      2. If possible, do you know the NCT clinical trial number?

      I live in southern california & would be willing to travel to UCSF.

      3. If possible, would you give me a contact number at UCSF for this trial.

      God Bless you & your husband.

      Thank you for responding to my questions.

      Dave

       

       

       

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      killmel
      Participant

      Hi Deborah,

      I am a newbie. It is so great to hear your husband has such a great response on BRAF/MEK

      I am very interested in this Braf/MEK trial.

      1. Is the trial your hubsand on GSK or Roche sponsored?

      2. If possible, do you know the NCT clinical trial number?

      I live in southern california & would be willing to travel to UCSF.

      3. If possible, would you give me a contact number at UCSF for this trial.

      God Bless you & your husband.

      Thank you for responding to my questions.

      Dave

       

       

       

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        mommydog
        Participant

        Dave,

        The trial no. is NCT01072175.  It is sponsored by GSK and they are still recruiting.  According to the info on the gov. site, the trial is being conducted in several places, including Southern Ca.

        Here's a link to the info in clinicaltrials.gov

        http://clinicaltrials.gov/ct2/show/NCT01072175?term=melanoma+mek&spons=%22GlaxoSmithKline%22&spons_ex=Y&rank=4

         

        Let me know if there's any other informaiton that I can provide.

        Deborah

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        mommydog
        Participant

        Dave,

        The trial no. is NCT01072175.  It is sponsored by GSK and they are still recruiting.  According to the info on the gov. site, the trial is being conducted in several places, including Southern Ca.

        Here's a link to the info in clinicaltrials.gov

        http://clinicaltrials.gov/ct2/show/NCT01072175?term=melanoma+mek&spons=%22GlaxoSmithKline%22&spons_ex=Y&rank=4

         

        Let me know if there's any other informaiton that I can provide.

        Deborah

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        killmel
        Participant

        Hi,

         

        Thank you so much for the info.I called the site in Los Angles and they are NOT recruiting for melanoma patients anymore. They are recruiting for other types of cancer.

        Do you know if UCSF is still recruiting for melanoma patients. I cannot find a number to call UCSF. Would you have a contact number for UCSF.

        Thanks,

        Dave

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        killmel
        Participant

        Hi,

         

        Thank you so much for the info.I called the site in Los Angles and they are NOT recruiting for melanoma patients anymore. They are recruiting for other types of cancer.

        Do you know if UCSF is still recruiting for melanoma patients. I cannot find a number to call UCSF. Would you have a contact number for UCSF.

        Thanks,

        Dave

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        mommydog
        Participant

        Andrea Kantor

        Clinical Research Coordinator

        Cutaneous Oncology Program

        UCSF Helen Diller Family Comprehensive Cancer Center

        Investigational Trials Resource

        Room A736| Box 1297

        415.885.3855 /phone

        415.514.6969 /fax

        [email protected]

         

        try this, and good luck.

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        mommydog
        Participant

        Andrea Kantor

        Clinical Research Coordinator

        Cutaneous Oncology Program

        UCSF Helen Diller Family Comprehensive Cancer Center

        Investigational Trials Resource

        Room A736| Box 1297

        415.885.3855 /phone

        415.514.6969 /fax

        [email protected]

         

        try this, and good luck.

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        killmel
        Participant

        Thank you so much for the info.

         

        How have the side effects of these 2 drugs (BRAF & MEK) been for your husband??

         

        I pray he continues to respond to these drugs.

         

        Dave

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        killmel
        Participant

        Thank you so much for the info.

         

        How have the side effects of these 2 drugs (BRAF & MEK) been for your husband??

         

        I pray he continues to respond to these drugs.

         

        Dave

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        mommydog
        Participant

        Not bad.  He has had some fevers and chills, at times quite severe, but those symptoms have subsided.

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        mommydog
        Participant

        Not bad.  He has had some fevers and chills, at times quite severe, but those symptoms have subsided.

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        peterk
        Participant

        Hi All,

        My wife is considering entering this trial, I believe it's a newer version of GSK BRAF with MEK.

        We have some reservations re side effects and effectiveness, given there is no defined time and

        It would reassure us if we knew there are people out there taking this for well over a year or two with good effects.

        Believing we will overcome this.

        Regards

        Peter

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        peterk
        Participant

        Hi All,

        My wife is considering entering this trial, I believe it's a newer version of GSK BRAF with MEK.

        We have some reservations re side effects and effectiveness, given there is no defined time and

        It would reassure us if we knew there are people out there taking this for well over a year or two with good effects.

        Believing we will overcome this.

        Regards

        Peter

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        peterk
        Participant

        Hi All,

        My wife is considering entering this trial, I believe it's a newer version of GSK BRAF with MEK.

        We have some reservations re side effects and effectiveness, given there is no defined time and

        It would reassure us if we knew there are people out there taking this for well over a year or two with good effects.

        Believing we will overcome this.

        Regards

        Peter

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        Tadams
        Participant
        Call UCLA, to make an appointment with Dr. Antoni Ribas 310-794-4955. My husband (stage iv) started the MEK/Braf combo a week and a half ago. Good results so far. I’m hoping it’s not temporary as well.

        Prayers & Blessings,
        Tam

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        Tadams
        Participant
        Call UCLA, to make an appointment with Dr. Antoni Ribas 310-794-4955. My husband (stage iv) started the MEK/Braf combo a week and a half ago. Good results so far. I’m hoping it’s not temporary as well.

        Prayers & Blessings,
        Tam

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      JerryfromFauq
      Participant

      The reports seldom give the maximum effective time for the BRAF treatments.  This is because some  of the early trial patients are still reponding., not a majority, but some.  They are not at a pointthat they can say that ALL will ultimately relapse.  Time will tell and maybe by that tiime they will have blocked the secondary paths (MEK may extend the % of people over the current % that have longer term results than the Median from the early studies.  Never say always withanything about Melanoma!  Good luck, prayinf for you and your husband.

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      JerryfromFauq
      Participant

      The reports seldom give the maximum effective time for the BRAF treatments.  This is because some  of the early trial patients are still reponding., not a majority, but some.  They are not at a pointthat they can say that ALL will ultimately relapse.  Time will tell and maybe by that tiime they will have blocked the secondary paths (MEK may extend the % of people over the current % that have longer term results than the Median from the early studies.  Never say always withanything about Melanoma!  Good luck, prayinf for you and your husband.

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        peterk
        Participant

         

        Are there any preliminary results from this trial available anywhere?

        What is the longest effectiveness, if know at this point?

        Can someone who took part in the trail provide an up to date info please –

        Peter

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        I have heard that some have made the two year mark. I am just finishing month 15, and doing well. New scans in March 19, 2012 so one never should be too confident much less cocky about it. I have not become NED but those suckers in my lungs sure shrunk. I had a bout with EN (eruythema nodostum) which was just a lot of lumps and bumps on my legs. some had to drop out for the side affects, and others had the tumors start to grow again.

        Loading spinner
        I have heard that some have made the two year mark. I am just finishing month 15, and doing well. New scans in March 19, 2012 so one never should be too confident much less cocky about it. I have not become NED but those suckers in my lungs sure shrunk. I had a bout with EN (eruythema nodostum) which was just a lot of lumps and bumps on my legs. some had to drop out for the side affects, and others had the tumors start to grow again.

        Loading spinner
        I have heard that some have made the two year mark. I am just finishing month 15, and doing well. New scans in March 19, 2012 so one never should be too confident much less cocky about it. I have not become NED but those suckers in my lungs sure shrunk. I had a bout with EN (eruythema nodostum) which was just a lot of lumps and bumps on my legs. some had to drop out for the side affects, and others had the tumors start to grow again.

        Loading spinner
        peterk
        Participant

         

        Are there any preliminary results from this trial available anywhere?

        What is the longest effectiveness, if know at this point?

        Can someone who took part in the trail provide an up to date info please –

        Peter

        Loading spinner
        peterk
        Participant

         

        Are there any preliminary results from this trial available anywhere?

        What is the longest effectiveness, if know at this point?

        Can someone who took part in the trail provide an up to date info please –

        Peter

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      mommydog
      Participant

      My husband has been on this trial (GSK BRAF with randomized MEK) for over eight months now.  As of the last PET scan three weeks ago, his tumors had decreased in size by 81.7%.  Basically, there's very little left.  He is doing so well that he was given permission to go ahead with knee replacement surgery.  As far as we've heard, people are responding well to this treatment with few side effects.  There was a recent article in the SF Chronicle about a women in my husband's study who has been in the trial for 9 months and has had tumor reduction of 85%.  I think I'm just going to stop thinking about the other shoe dropping, because, for now, things are great.

      Deborah

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        peterk
        Participant

        Many thanks. That's really good news. My wife has just started here in Australia.

        Peter

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        peterk
        Participant

        Many thanks. That's really good news. My wife has just started here in Australia.

        Peter

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        peterk
        Participant

        Many thanks. That's really good news. My wife has just started here in Australia.

        Peter

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      mommydog
      Participant

      My husband has been on this trial (GSK BRAF with randomized MEK) for over eight months now.  As of the last PET scan three weeks ago, his tumors had decreased in size by 81.7%.  Basically, there's very little left.  He is doing so well that he was given permission to go ahead with knee replacement surgery.  As far as we've heard, people are responding well to this treatment with few side effects.  There was a recent article in the SF Chronicle about a women in my husband's study who has been in the trial for 9 months and has had tumor reduction of 85%.  I think I'm just going to stop thinking about the other shoe dropping, because, for now, things are great.

      Deborah

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      mommydog
      Participant

      My husband has been on this trial (GSK BRAF with randomized MEK) for over eight months now.  As of the last PET scan three weeks ago, his tumors had decreased in size by 81.7%.  Basically, there's very little left.  He is doing so well that he was given permission to go ahead with knee replacement surgery.  As far as we've heard, people are responding well to this treatment with few side effects.  There was a recent article in the SF Chronicle about a women in my husband's study who has been in the trial for 9 months and has had tumor reduction of 85%.  I think I'm just going to stop thinking about the other shoe dropping, because, for now, things are great.

      Deborah

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