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ORGANIZING THE BRAF TRIALS: ATTENTION ALL BRAF TRIAL PATIENTS!

Forums General Melanoma Community ORGANIZING THE BRAF TRIALS: ATTENTION ALL BRAF TRIAL PATIENTS!

  • Post
    jag
    Participant

    Having been out of the treatment loop, unfortunately, I have lost track of all of the different trials out there, so many letters, so many mutation types, so many histology tests so many drug companies and so on.  I would like to start to organize the different medications (at least get started) so we can see what is working for who.

    Having been out of the treatment loop, unfortunately, I have lost track of all of the different trials out there, so many letters, so many mutation types, so many histology tests so many drug companies and so on.  I would like to start to organize the different medications (at least get started) so we can see what is working for who.

     GSK 113929

    is the number of a trial who "patient" I won't say it yet, is responding very well to.  The drug is made by Glaxo Smith Kline, it is for people with BRAF mutations who also have brain mets.

    This is the actual medication name: GSK2118436

    The patient has responded amazingly well despite a severe recent relapse.  For now consider this information to be similar to a statistic in a lab report.  

    The patient will give the patients own account with much more personality and entertaining details.

    Just putting this one out there as it is helpful if you have brain mets, and are not responding.

    Here is the link:

     http://www.clinicaltrials.gov/ct2/show/study/NCT01266967?term=GSK+113929&rank=1&show_locs=Y#locn

    Information that would be helpful:(just copy and paste this form and fill in your treatments)

    Drug name/clinical trial letters/manufacturer

    Trial Name

    Drug Company

    Response duration vs non Response 

    Previous Treatments

    Mutation status.

    Hopefully we can organize this information as to which companies are producing a better product.  Back when Yervoy was being investigated, it was originally a biopharmaceutical startup made by a company named Medarex.  Pfizer was making a similar product at the same time.  For some reason, The Medarex one was better and zipped right through the clinical trials, it went from the names MDX 010 to Ipilimumab to finally Yervoy.  Pfizers was simply discontinued.  

    Thank you and I hope this is a helpful start by patients for patients.

     

    .

     

     

Viewing 7 reply threads
  • Replies
      Janner
      Participant

      John,

      If you get some good replies and decent info here, I could make a section for this info on my website.  Just a thought.

        jag
        Participant

        Janner, you would be the perfect person to organize the information, I spoke to my derm about your website (first derm appt I actually went to since becoming stage IV, (I am happily able to nitpick about the bumps and scratches instead of bitching about going to the doctor) anyway, they kind of nodded their head like I was talking about some kooky alternative medicine, (I'm sure they hear all kinds of wacky crap from patients) but nonetheless, I think your website is better than most of the other crap that is on the web even the stuff by skin specialists that tend to have the same repetitive boring pictures, you even have patient testimonials and cool stuff like that.  Would definitely appreciate your help.

        John 

        jag
        Participant

        Janner, you would be the perfect person to organize the information, I spoke to my derm about your website (first derm appt I actually went to since becoming stage IV, (I am happily able to nitpick about the bumps and scratches instead of bitching about going to the doctor) anyway, they kind of nodded their head like I was talking about some kooky alternative medicine, (I'm sure they hear all kinds of wacky crap from patients) but nonetheless, I think your website is better than most of the other crap that is on the web even the stuff by skin specialists that tend to have the same repetitive boring pictures, you even have patient testimonials and cool stuff like that.  Would definitely appreciate your help.

        John 

      Janner
      Participant

      John,

      If you get some good replies and decent info here, I could make a section for this info on my website.  Just a thought.

      NicOz
      Participant

      Drug name/clinical trial letters/manufacturer GSK113929

      Trial Name An Open-Label, Two-Cohort, Multicentre Study of GSK2118436 as a Single Agent in Treatment Naïve and Previously Treated Subjects With BRAF Mutation-Positive Metastatic Melanoma to the Brain

      Drug Company GSK

      Response duration vs non Response : "Dramatic Response" by week 3 (16/05/11- currently only had 3-4 weeks treatment)

      Previous Treatments Surgeries, SRS, fotemustine, temozolomide

      Mutation status BRAF V600E-

      NicOz
      Participant

      Drug name/clinical trial letters/manufacturer GSK113929

      Trial Name An Open-Label, Two-Cohort, Multicentre Study of GSK2118436 as a Single Agent in Treatment Naïve and Previously Treated Subjects With BRAF Mutation-Positive Metastatic Melanoma to the Brain

      Drug Company GSK

      Response duration vs non Response : "Dramatic Response" by week 3 (16/05/11- currently only had 3-4 weeks treatment)

      Previous Treatments Surgeries, SRS, fotemustine, temozolomide

      Mutation status BRAF V600E-

      Harry in Fair Oaks
      Participant

      Details of the BRAF/MEK trial I started last week:

      Sponsor Company:  GSK

      Name of Trial:  BRF113220:  "An Open-Label, Dose Escalation,Phase I/II Study to Investigate the Safety, Pharmacokinetics, Pharmacodynamics and Clinical Activityof the BRAF Inhibitor GSK2118436 in Combination with the MEK Inhibitor GSK1120212 in Subjects with BRAF Mutant Metastatic Melanoma"

      What a mouthful!

      Person in Charge of the Research Study:  Steven J. O'Day, MD

      Address of Study Site:  The Angeles Clinic and Research Institute

                                                11818 Wilshire Blvd., Suite 200

                                                Los Angeles, CA 90025

      Phone:  310-582-7900

      About 200 people, ages 18 years and older, in 2 countries, will take part.  The study will last about 2 years.

      My specs:  Currently Stage IV with bone mets in clavicle (a big one!), hip, sacrum, and femur.  Also at least one sub-q, and a suspect small nodule in lung.

      My previous treatments:  surgery (4 times), CancerVax (1997 -2000), and GM-CSF (2000 – 2002).

      On 300 mg BRAF and 2 mg MEK per day (I got randomized to the arm with the max MEK).

      I guess I was born to be a Guinea pig!

      Best wishes,

      Harry

      Harry in Fair Oaks
      Participant

      Details of the BRAF/MEK trial I started last week:

      Sponsor Company:  GSK

      Name of Trial:  BRF113220:  "An Open-Label, Dose Escalation,Phase I/II Study to Investigate the Safety, Pharmacokinetics, Pharmacodynamics and Clinical Activityof the BRAF Inhibitor GSK2118436 in Combination with the MEK Inhibitor GSK1120212 in Subjects with BRAF Mutant Metastatic Melanoma"

      What a mouthful!

      Person in Charge of the Research Study:  Steven J. O'Day, MD

      Address of Study Site:  The Angeles Clinic and Research Institute

                                                11818 Wilshire Blvd., Suite 200

                                                Los Angeles, CA 90025

      Phone:  310-582-7900

      About 200 people, ages 18 years and older, in 2 countries, will take part.  The study will last about 2 years.

      My specs:  Currently Stage IV with bone mets in clavicle (a big one!), hip, sacrum, and femur.  Also at least one sub-q, and a suspect small nodule in lung.

      My previous treatments:  surgery (4 times), CancerVax (1997 -2000), and GM-CSF (2000 – 2002).

      On 300 mg BRAF and 2 mg MEK per day (I got randomized to the arm with the max MEK).

      I guess I was born to be a Guinea pig!

      Best wishes,

      Harry

      sharmon
      Participant

      Hi,  My husband is stage 4 and I think this is a great ideal .  I hope this helps.

       

      Drug name/clinical trial letters/manufacturer :

           GSK 11202122 with Pemetrexed  protocol 2010-0610

      Trial Name:

         GSK MEK Inhibitor with chemDrug Company:    

      Response duration vs non Response:

            Was on MEK alone for 14 months then started to progress,  Pemetrexed was add 3 weeks ago and all discomfort is gone.

      Previous Treatments

           Luekine 2008 ,  Ipi carbo/taxel  2009,   Mek 2010 – March 2010,   MEk with pemetrexed now    

      Mutation status. 

           Braf negative, pi3k negative, c-kit negative, nras negative,  hla2 negative

       

      Thanks

      Brent and Sharon

      sharmon
      Participant

      Hi,  My husband is stage 4 and I think this is a great ideal .  I hope this helps.

       

      Drug name/clinical trial letters/manufacturer :

           GSK 11202122 with Pemetrexed  protocol 2010-0610

      Trial Name:

         GSK MEK Inhibitor with chemDrug Company:    

      Response duration vs non Response:

            Was on MEK alone for 14 months then started to progress,  Pemetrexed was add 3 weeks ago and all discomfort is gone.

      Previous Treatments

           Luekine 2008 ,  Ipi carbo/taxel  2009,   Mek 2010 – March 2010,   MEk with pemetrexed now    

      Mutation status. 

           Braf negative, pi3k negative, c-kit negative, nras negative,  hla2 negative

       

      Thanks

      Brent and Sharon

Viewing 7 reply threads
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