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  • Post
    • August 26, 2014 at 2:31 pm
    Mandi0280
    Participant

      This is a qestion for anyone that can help and I will provide all of the information that I have. Here goes. I work with a lady that was diagnosed with stage 4 OM about 6 years ago. This is where I don't have all the info as to what happened at this point but fast forward about 5 years of checkup and clean scans to the last year where she has had a mestastasis to the liver, She has taken IPI that she did not tolerate very well ( made her very sick with colitis) She has also had a few ablations to the liver that did well but the tumors would come back. Last week her doctor sent her home with a bottle of pain pills and told her that was all he could do for her. She now has active tumors in both lobes of the liver. She sees doctors at The West Clinic in Memphis,TN. I'm not sure if the doctor is a melanoma specialist or not but my real question is this. Does anyone know of any stage 4 melanoma studies going on now that she could possibly get into. This could be her last hope!

      Thanks for any input & again what i have stated her is really all the info that i have about her case.

       

       

    Viewing 8 reply threads
    • Replies
        • August 26, 2014 at 3:44 pm
        arthurjedi007
        Participant

          Sounds like a very lousy doctor to me. I saw Dr Shih at Sarah Cannon in Nashville, TN once and he is a melanoma specialist. They are also supposed to be pretty good at Vanderbilt in Nashville. Not sure about anywhere else in TN.

          If she has been tested for BRAF and it came back positive there is the FDA approved combo Tafinlar/Mekenist. She could start that from her doctor in a couple days assuming insurance, etc is fast or just pay for the first month so can start right away. If that came back negative and since she already did ipi she probably qualifies for one of the PD1 extended access program trials. I'm in the Merck one. Here are their trial numbers with more details. If I was her I would have her doctor get her into one of these trials if she is BRAF negative. It should take about a week maybe less for some I've heard. For me it was 2 weeks to get into it.

          NCT02083484
          Merck PD1 EAP

          NCT02142218
          BMS nivo PD1 EAP

          Here's a link that was provided on here awhile back to more specifically find a treatment:

          http://www.medpagetoday.com/resource-center/melanoma-therapy/therapy-finder?utm_content=&utm_medium=email&utm_campaign=DailyHeadlines&utm_source=WC&xid=NL_DHE_2014-01-31&eun=g722410d0r&userid=722410&[email protected]&mu_id=5883740

           

          Also http://www.clinicaltrials.gov contains all the trials going on. If you click on advanced search and enter some things it should show lots of trials that can make your head spin.

          Hope that is some help.

          Artie

          • August 26, 2014 at 3:44 pm
          arthurjedi007
          Participant

            Sounds like a very lousy doctor to me. I saw Dr Shih at Sarah Cannon in Nashville, TN once and he is a melanoma specialist. They are also supposed to be pretty good at Vanderbilt in Nashville. Not sure about anywhere else in TN.

            If she has been tested for BRAF and it came back positive there is the FDA approved combo Tafinlar/Mekenist. She could start that from her doctor in a couple days assuming insurance, etc is fast or just pay for the first month so can start right away. If that came back negative and since she already did ipi she probably qualifies for one of the PD1 extended access program trials. I'm in the Merck one. Here are their trial numbers with more details. If I was her I would have her doctor get her into one of these trials if she is BRAF negative. It should take about a week maybe less for some I've heard. For me it was 2 weeks to get into it.

            NCT02083484
            Merck PD1 EAP

            NCT02142218
            BMS nivo PD1 EAP

            Here's a link that was provided on here awhile back to more specifically find a treatment:

            http://www.medpagetoday.com/resource-center/melanoma-therapy/therapy-finder?utm_content=&utm_medium=email&utm_campaign=DailyHeadlines&utm_source=WC&xid=NL_DHE_2014-01-31&eun=g722410d0r&userid=722410&[email protected]&mu_id=5883740

             

            Also http://www.clinicaltrials.gov contains all the trials going on. If you click on advanced search and enter some things it should show lots of trials that can make your head spin.

            Hope that is some help.

            Artie

            • August 26, 2014 at 3:44 pm
            arthurjedi007
            Participant

              Sounds like a very lousy doctor to me. I saw Dr Shih at Sarah Cannon in Nashville, TN once and he is a melanoma specialist. They are also supposed to be pretty good at Vanderbilt in Nashville. Not sure about anywhere else in TN.

              If she has been tested for BRAF and it came back positive there is the FDA approved combo Tafinlar/Mekenist. She could start that from her doctor in a couple days assuming insurance, etc is fast or just pay for the first month so can start right away. If that came back negative and since she already did ipi she probably qualifies for one of the PD1 extended access program trials. I'm in the Merck one. Here are their trial numbers with more details. If I was her I would have her doctor get her into one of these trials if she is BRAF negative. It should take about a week maybe less for some I've heard. For me it was 2 weeks to get into it.

              NCT02083484
              Merck PD1 EAP

              NCT02142218
              BMS nivo PD1 EAP

              Here's a link that was provided on here awhile back to more specifically find a treatment:

              http://www.medpagetoday.com/resource-center/melanoma-therapy/therapy-finder?utm_content=&utm_medium=email&utm_campaign=DailyHeadlines&utm_source=WC&xid=NL_DHE_2014-01-31&eun=g722410d0r&userid=722410&[email protected]&mu_id=5883740

               

              Also http://www.clinicaltrials.gov contains all the trials going on. If you click on advanced search and enter some things it should show lots of trials that can make your head spin.

              Hope that is some help.

              Artie

              • August 26, 2014 at 4:06 pm
              RJoeyB
              Participant

                Ditto to what Artie said, there are still some good options for your colleague beyond being sent home with abottle of pills.  Also, there is an ocular melanoma specific forum on this site as well (CURE OM), here:

                http://www.melanoma.org/find-support/patient-community/cure-om-forum

                I don't know much about OM and the forum is much less trafficked than this one, but if you search, you may find some additional information there.

                Best, Joe

                  • August 26, 2014 at 10:39 pm
                  G-Samsa
                  Participant

                    I thought at  the 2013 ASCO conference there was great fanfare about an MEK inhibitor product from AstraZeneca for occular melanoma—hailed as a breakthrough for treatment of the disease.

                    • August 26, 2014 at 10:39 pm
                    G-Samsa
                    Participant

                      I thought at  the 2013 ASCO conference there was great fanfare about an MEK inhibitor product from AstraZeneca for occular melanoma—hailed as a breakthrough for treatment of the disease.

                      • August 27, 2014 at 2:15 am
                      arthurjedi007
                      Participant

                        Before my melanoma time by a few weeks lol but yes looks like Selumetinib is for OM. http://www.medscape.com/viewarticle/805169

                        Except since her's after 6ish years has now shown up in the liver I dunno if she needs treated with an OM cause that is what she had 6 years ago or a regular mel treatment like PD1 or something.

                        Artie

                         

                        • August 27, 2014 at 2:15 am
                        arthurjedi007
                        Participant

                          Before my melanoma time by a few weeks lol but yes looks like Selumetinib is for OM. http://www.medscape.com/viewarticle/805169

                          Except since her's after 6ish years has now shown up in the liver I dunno if she needs treated with an OM cause that is what she had 6 years ago or a regular mel treatment like PD1 or something.

                          Artie

                           

                          • August 27, 2014 at 2:15 am
                          arthurjedi007
                          Participant

                            Before my melanoma time by a few weeks lol but yes looks like Selumetinib is for OM. http://www.medscape.com/viewarticle/805169

                            Except since her's after 6ish years has now shown up in the liver I dunno if she needs treated with an OM cause that is what she had 6 years ago or a regular mel treatment like PD1 or something.

                            Artie

                             

                            • August 26, 2014 at 10:39 pm
                            G-Samsa
                            Participant

                              I thought at  the 2013 ASCO conference there was great fanfare about an MEK inhibitor product from AstraZeneca for occular melanoma—hailed as a breakthrough for treatment of the disease.

                            • August 26, 2014 at 4:06 pm
                            RJoeyB
                            Participant

                              Ditto to what Artie said, there are still some good options for your colleague beyond being sent home with abottle of pills.  Also, there is an ocular melanoma specific forum on this site as well (CURE OM), here:

                              http://www.melanoma.org/find-support/patient-community/cure-om-forum

                              I don't know much about OM and the forum is much less trafficked than this one, but if you search, you may find some additional information there.

                              Best, Joe

                              • August 26, 2014 at 4:06 pm
                              RJoeyB
                              Participant

                                Ditto to what Artie said, there are still some good options for your colleague beyond being sent home with abottle of pills.  Also, there is an ocular melanoma specific forum on this site as well (CURE OM), here:

                                http://www.melanoma.org/find-support/patient-community/cure-om-forum

                                I don't know much about OM and the forum is much less trafficked than this one, but if you search, you may find some additional information there.

                                Best, Joe

                                • August 27, 2014 at 3:23 pm
                                Mandi0280
                                Participant

                                  Thanks to everyone for the information. She is supposed to talk to a different doctor at The West Clinic today and see if he has any suggestions. I will see what he says and metion the info you guys have given. I hate for anyone to think they have NO options!

                                   

                                  Thanks again!

                                  • August 27, 2014 at 3:23 pm
                                  Mandi0280
                                  Participant

                                    Thanks to everyone for the information. She is supposed to talk to a different doctor at The West Clinic today and see if he has any suggestions. I will see what he says and metion the info you guys have given. I hate for anyone to think they have NO options!

                                     

                                    Thanks again!

                                      • August 27, 2014 at 3:27 pm
                                      Mandi0280
                                      Participant

                                        I did find out that she also has taken Temodar. She took that when she was first diagnosed and done well with it. She also just came off of it and her melanoma had no response to it

                                        • August 27, 2014 at 3:27 pm
                                        Mandi0280
                                        Participant

                                          I did find out that she also has taken Temodar. She took that when she was first diagnosed and done well with it. She also just came off of it and her melanoma had no response to it

                                          • August 27, 2014 at 3:27 pm
                                          Mandi0280
                                          Participant

                                            I did find out that she also has taken Temodar. She took that when she was first diagnosed and done well with it. She also just came off of it and her melanoma had no response to it

                                          • August 27, 2014 at 3:23 pm
                                          Mandi0280
                                          Participant

                                            Thanks to everyone for the information. She is supposed to talk to a different doctor at The West Clinic today and see if he has any suggestions. I will see what he says and metion the info you guys have given. I hate for anyone to think they have NO options!

                                             

                                            Thanks again!

                                        Viewing 8 reply threads
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