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GSK BRAF with randomized MEK trial—then what?
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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
    • September 7, 2011 at 7:37 pm
    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

    Viewing 6 reply threads
    • Replies
        • September 7, 2011 at 8:28 pm
        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

           

           

           

          • September 7, 2011 at 8:28 pm
          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

             

             

             

              • September 7, 2011 at 9:03 pm
              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

                • September 7, 2011 at 9:22 pm
                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

                  • September 7, 2011 at 10:03 pm
                  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.

                    • September 7, 2011 at 10:57 pm
                    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

                      • September 8, 2011 at 12:24 am
                      mommydog
                      Participant

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

                        • November 13, 2011 at 1:41 pm
                        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

                          • November 13, 2011 at 1:41 pm
                          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

                            • November 13, 2011 at 1:41 pm
                            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

                              • September 8, 2011 at 12:24 am
                              mommydog
                              Participant

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

                                • September 7, 2011 at 10:57 pm
                                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

                                  • September 7, 2011 at 10:03 pm
                                  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.

                                    • September 7, 2011 at 9:22 pm
                                    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

                                      • September 7, 2011 at 9:03 pm
                                      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

                                        • September 19, 2011 at 4:23 am
                                        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

                                          • September 19, 2011 at 4:23 am
                                          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

                                          • September 8, 2011 at 12:14 am
                                          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.

                                              • November 17, 2011 at 1:23 am
                                              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

                                                • March 16, 2012 at 10:10 pm
                                                john partrick michael murphy
                                                Participant
                                                  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.
                                                  • March 16, 2012 at 10:10 pm
                                                  john partrick michael murphy
                                                  Participant
                                                    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.
                                                    • March 16, 2012 at 10:10 pm
                                                    john partrick michael murphy
                                                    Participant
                                                      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.
                                                      • November 17, 2011 at 1:23 am
                                                      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

                                                        • November 17, 2011 at 1:23 am
                                                        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

                                                        • September 8, 2011 at 12:14 am
                                                        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.

                                                          • November 17, 2011 at 3:15 am
                                                          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

                                                              • November 24, 2011 at 11:02 am
                                                              peterk
                                                              Participant

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

                                                                Peter

                                                                • November 24, 2011 at 11:02 am
                                                                peterk
                                                                Participant

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

                                                                  Peter

                                                                  • November 24, 2011 at 11:02 am
                                                                  peterk
                                                                  Participant

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

                                                                    Peter

                                                                  • November 17, 2011 at 3:15 am
                                                                  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

                                                                    • November 17, 2011 at 3:15 am
                                                                    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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