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Trials for Joshie…and others…in one place

Forums General Melanoma Community Trials for Joshie…and others…in one place

  • Post
    Bubbles
    Participant

      I put this together if you are interested, Joshie.  Not alone….but with a lot of help from YOUR friends!!!  Just so you'd have things in one place if you wanted to refer.  MPIP won't allow a lot of links…so I put them in this blog post. 

      Perhaps this might be useful for others if needed….when you've been through a lot of therapies…but still need something…..

      http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/12/trials-for-joshie-and-paulster-and.html

      Don't know if it is of much help….but that's what we came up with.  Hope you are back at home with your dear ones.  Much love and hugs.  Celeste

       

       

       

    Viewing 51 reply threads
    • Replies
        Patrisa
        Participant

          Celeste,

          you are amazing and a true angel on earth…

          I really admire your efforts and knowledge and above all your empathy…  God bless you!

          Patrisa

          Patrisa
          Participant

            Celeste,

            you are amazing and a true angel on earth…

            I really admire your efforts and knowledge and above all your empathy…  God bless you!

            Patrisa

            Patrisa
            Participant

              Celeste,

              you are amazing and a true angel on earth…

              I really admire your efforts and knowledge and above all your empathy…  God bless you!

              Patrisa

              JoshF
              Participant

                Love you Celeste!!!

                JoshF
                Participant

                  Love you Celeste!!!

                  JoshF
                  Participant

                    Love you Celeste!!!

                    jbronicki
                    Participant

                      Ditto, you are amazing Celeste! This made me think of a conference I was just at in D.C. several weeks ago.  It's called OpenCon and it's about OpenAccess and OpenData regarding federally funded research and how important it is that the public gets FREE access to the research results and raw data (i.e much of the research is funded by NIH, etc).  And how this data AND publications should be freely available to the public rather than behind a wall of subscriptions, etc.

                      Well I was in a meeting with a bunch of health researchers and several young MDs from around the world.  One of the ladies was from ClinicalTrials.gov.  They were talking about how to use Open data, etc to help patients.  Well I proceeded to tell them I was on the MPIP patient forum due to my husbands diagnosis and how much information is exchanged (not only information, but high level clinical/treatment information that patients don't get from their own doctors!).  I mentioned how the patients on MPIP often know way more about clinical trials and all the requirements/stipulations of these trials and many times patients ARE NOT getting this from their own doctors, we trust the people on the board the most.  And how advanced the discussions are about treatment protocols based on progression, stage, etc.  on MPIP (I was mostly referring to you :))  And how much patients are tracking new research such as Ed and you.  These researchers and doctors were STUNNED at how smart you all are, I told them I think they underestimate the patient population. I don't think they realized that patients are doing this every day.  No one is more motivated to understand the research more than the patient.  

                      You are amazing!

                      jbronicki
                      Participant

                        Ditto, you are amazing Celeste! This made me think of a conference I was just at in D.C. several weeks ago.  It's called OpenCon and it's about OpenAccess and OpenData regarding federally funded research and how important it is that the public gets FREE access to the research results and raw data (i.e much of the research is funded by NIH, etc).  And how this data AND publications should be freely available to the public rather than behind a wall of subscriptions, etc.

                        Well I was in a meeting with a bunch of health researchers and several young MDs from around the world.  One of the ladies was from ClinicalTrials.gov.  They were talking about how to use Open data, etc to help patients.  Well I proceeded to tell them I was on the MPIP patient forum due to my husbands diagnosis and how much information is exchanged (not only information, but high level clinical/treatment information that patients don't get from their own doctors!).  I mentioned how the patients on MPIP often know way more about clinical trials and all the requirements/stipulations of these trials and many times patients ARE NOT getting this from their own doctors, we trust the people on the board the most.  And how advanced the discussions are about treatment protocols based on progression, stage, etc.  on MPIP (I was mostly referring to you :))  And how much patients are tracking new research such as Ed and you.  These researchers and doctors were STUNNED at how smart you all are, I told them I think they underestimate the patient population. I don't think they realized that patients are doing this every day.  No one is more motivated to understand the research more than the patient.  

                        You are amazing!

                        jbronicki
                        Participant

                          Ditto, you are amazing Celeste! This made me think of a conference I was just at in D.C. several weeks ago.  It's called OpenCon and it's about OpenAccess and OpenData regarding federally funded research and how important it is that the public gets FREE access to the research results and raw data (i.e much of the research is funded by NIH, etc).  And how this data AND publications should be freely available to the public rather than behind a wall of subscriptions, etc.

                          Well I was in a meeting with a bunch of health researchers and several young MDs from around the world.  One of the ladies was from ClinicalTrials.gov.  They were talking about how to use Open data, etc to help patients.  Well I proceeded to tell them I was on the MPIP patient forum due to my husbands diagnosis and how much information is exchanged (not only information, but high level clinical/treatment information that patients don't get from their own doctors!).  I mentioned how the patients on MPIP often know way more about clinical trials and all the requirements/stipulations of these trials and many times patients ARE NOT getting this from their own doctors, we trust the people on the board the most.  And how advanced the discussions are about treatment protocols based on progression, stage, etc.  on MPIP (I was mostly referring to you :))  And how much patients are tracking new research such as Ed and you.  These researchers and doctors were STUNNED at how smart you all are, I told them I think they underestimate the patient population. I don't think they realized that patients are doing this every day.  No one is more motivated to understand the research more than the patient.  

                          You are amazing!

                          Corinne
                          Participant

                            Yep, Celeste, you are amazing and an angel on earth. Looks like you have inspired others to help you (Ed). Sorry I don't know the names of the rest. Merry Christmas to all!

                            Corinne and Randy

                            Corinne
                            Participant

                              Yep, Celeste, you are amazing and an angel on earth. Looks like you have inspired others to help you (Ed). Sorry I don't know the names of the rest. Merry Christmas to all!

                              Corinne and Randy

                                Mark_DC
                                Participant

                                  Good luck Josh and Paul and many others here smiley

                                  Celeste thanks for posting amazing as always yes

                                  Can be difficult reading this forum, sharing each others ups and downs, but so much great info and incredible people, really the best people are here which is so amazing

                                  Mark_DC
                                  Participant

                                    Good luck Josh and Paul and many others here smiley

                                    Celeste thanks for posting amazing as always yes

                                    Can be difficult reading this forum, sharing each others ups and downs, but so much great info and incredible people, really the best people are here which is so amazing

                                    Mark_DC
                                    Participant

                                      Good luck Josh and Paul and many others here smiley

                                      Celeste thanks for posting amazing as always yes

                                      Can be difficult reading this forum, sharing each others ups and downs, but so much great info and incredible people, really the best people are here which is so amazing

                                    Corinne
                                    Participant

                                      Yep, Celeste, you are amazing and an angel on earth. Looks like you have inspired others to help you (Ed). Sorry I don't know the names of the rest. Merry Christmas to all!

                                      Corinne and Randy

                                      maperny
                                      Participant

                                        Hi Celeste,

                                        I have not posted before but have taken much guidance from this site for some time now.

                                        My husband has been stage 4 since October 2014 when CT Scan showed small lesions in liver and lungs.  First diagnosed in April 2013 Stage 3, melanoma 9mm on back of scalp with gremlin cells showing up in the sentinel node.

                                        He then did a) clinical trial of IL -2 High Dose followed by Ipi – but gremlins continued their march;  b) 6 months of Opdivo – still no luck; c) Clinical trial IL-10 daily injections plus Keytruda.  This took us to January 2016 and during the three months on c)  there was a lot of progression including into bones (rib and spine).

                                        So next we decided on TIL (have been at MDA since the beginning), some of liver tumour was used for harvesting but we needed to slow things down fast so he did a chemo combo for a few cycles and then twice Opdivo/Ipi combo while we waited for TIL.  

                                        TIL went well in May (2.5 weeks in hospital), Low Dose IL-2 this time.  Unfortunately, not as many T-cells were harvested as hoped so the infusion was 4 billion but they were good quality.  I think they said 92% efficient or something like that.  Keytruda followed the TIL and we kept going on that until lumbar spine tumours got so painful that he needed radiation in August to try to relieve.  This was followed by liver radioembolization Y-90 spheres as liver situation was getting worse.  Unfortunately, the radiation on spine caused such inflammation to the largest tumour that it fractured the spine which resulted in emergency spine surgery end of August.

                                        In September, he started back on Keytruda and they did another Y-90 on the other lobe of the liver.  The good news at that time was that there was shrinkage from the procedure on the first lobe.  This was the first time in 2 years since diagnosis of stage 4 that anything had ever shrunk!  He has continued on Keytruda every 3 weeks and he will have body CT and MRI's of spine and brain in early January.  At that point we will know where we stand.

                                        In January we may be looking for another trial so this information you have provided is wonderful.  My husband is such a fighter (we have an 11-year-old son), and he has been to hell and back over the last two years, we keep buying time and trying to find the magic bullet he needs.

                                        Thank you again

                                        Maria

                                         

                                         

                                         

                                         

                                         

                                         

                                         

                                         

                                         

                                        maperny
                                        Participant

                                          Hi Celeste,

                                          I have not posted before but have taken much guidance from this site for some time now.

                                          My husband has been stage 4 since October 2014 when CT Scan showed small lesions in liver and lungs.  First diagnosed in April 2013 Stage 3, melanoma 9mm on back of scalp with gremlin cells showing up in the sentinel node.

                                          He then did a) clinical trial of IL -2 High Dose followed by Ipi – but gremlins continued their march;  b) 6 months of Opdivo – still no luck; c) Clinical trial IL-10 daily injections plus Keytruda.  This took us to January 2016 and during the three months on c)  there was a lot of progression including into bones (rib and spine).

                                          So next we decided on TIL (have been at MDA since the beginning), some of liver tumour was used for harvesting but we needed to slow things down fast so he did a chemo combo for a few cycles and then twice Opdivo/Ipi combo while we waited for TIL.  

                                          TIL went well in May (2.5 weeks in hospital), Low Dose IL-2 this time.  Unfortunately, not as many T-cells were harvested as hoped so the infusion was 4 billion but they were good quality.  I think they said 92% efficient or something like that.  Keytruda followed the TIL and we kept going on that until lumbar spine tumours got so painful that he needed radiation in August to try to relieve.  This was followed by liver radioembolization Y-90 spheres as liver situation was getting worse.  Unfortunately, the radiation on spine caused such inflammation to the largest tumour that it fractured the spine which resulted in emergency spine surgery end of August.

                                          In September, he started back on Keytruda and they did another Y-90 on the other lobe of the liver.  The good news at that time was that there was shrinkage from the procedure on the first lobe.  This was the first time in 2 years since diagnosis of stage 4 that anything had ever shrunk!  He has continued on Keytruda every 3 weeks and he will have body CT and MRI's of spine and brain in early January.  At that point we will know where we stand.

                                          In January we may be looking for another trial so this information you have provided is wonderful.  My husband is such a fighter (we have an 11-year-old son), and he has been to hell and back over the last two years, we keep buying time and trying to find the magic bullet he needs.

                                          Thank you again

                                          Maria

                                           

                                           

                                           

                                           

                                           

                                           

                                           

                                           

                                           

                                            _Paul_
                                            Participant

                                              Wow Maria,

                                              That has to feel really, really good to finally find SOMETHING that is helping your husband. You two have really been through the wringer.

                                              I wish you the very best – Paul

                                              _Paul_
                                              Participant

                                                Wow Maria,

                                                That has to feel really, really good to finally find SOMETHING that is helping your husband. You two have really been through the wringer.

                                                I wish you the very best – Paul

                                                maperny
                                                Participant

                                                  Thanks Paul

                                                  will you go in for TIL soon?  Where will you do it?  Good luck with it.  I believe it will definitely help you and although tough you will be fine as you have passed the tests to do it (or should do as lung function good).

                                                  For those that can do it, it works so well for many.

                                                  for us it was a case that it bought us time…  for which I am thankful.

                                                  thinking of you

                                                  maperny
                                                  Participant

                                                    Thanks Paul

                                                    will you go in for TIL soon?  Where will you do it?  Good luck with it.  I believe it will definitely help you and although tough you will be fine as you have passed the tests to do it (or should do as lung function good).

                                                    For those that can do it, it works so well for many.

                                                    for us it was a case that it bought us time…  for which I am thankful.

                                                    thinking of you

                                                    maperny
                                                    Participant

                                                      Thanks Paul

                                                      will you go in for TIL soon?  Where will you do it?  Good luck with it.  I believe it will definitely help you and although tough you will be fine as you have passed the tests to do it (or should do as lung function good).

                                                      For those that can do it, it works so well for many.

                                                      for us it was a case that it bought us time…  for which I am thankful.

                                                      thinking of you

                                                      _Paul_
                                                      Participant

                                                        Thanks again Maria. I am starting the chemo part on Tuesday, and the TIL a week after that. I am doing it at the SCCA in Seattle.

                                                        I know it is no cake walk but I think it is the best choice at this point by a landslide.

                                                        – Paul

                                                        _Paul_
                                                        Participant

                                                          Thanks again Maria. I am starting the chemo part on Tuesday, and the TIL a week after that. I am doing it at the SCCA in Seattle.

                                                          I know it is no cake walk but I think it is the best choice at this point by a landslide.

                                                          – Paul

                                                          maperny
                                                          Participant

                                                            Praying for you and here's to many billions of TILS ready to fight!!!!  They are so experienced in this in Seattle!

                                                            Maria

                                                            maperny
                                                            Participant

                                                              Praying for you and here's to many billions of TILS ready to fight!!!!  They are so experienced in this in Seattle!

                                                              Maria

                                                              maperny
                                                              Participant

                                                                Praying for you and here's to many billions of TILS ready to fight!!!!  They are so experienced in this in Seattle!

                                                                Maria

                                                                _Paul_
                                                                Participant

                                                                  Thanks again Maria. I am starting the chemo part on Tuesday, and the TIL a week after that. I am doing it at the SCCA in Seattle.

                                                                  I know it is no cake walk but I think it is the best choice at this point by a landslide.

                                                                  – Paul

                                                                  _Paul_
                                                                  Participant

                                                                    Wow Maria,

                                                                    That has to feel really, really good to finally find SOMETHING that is helping your husband. You two have really been through the wringer.

                                                                    I wish you the very best – Paul

                                                                  maperny
                                                                  Participant

                                                                    Hi Celeste,

                                                                    I have not posted before but have taken much guidance from this site for some time now.

                                                                    My husband has been stage 4 since October 2014 when CT Scan showed small lesions in liver and lungs.  First diagnosed in April 2013 Stage 3, melanoma 9mm on back of scalp with gremlin cells showing up in the sentinel node.

                                                                    He then did a) clinical trial of IL -2 High Dose followed by Ipi – but gremlins continued their march;  b) 6 months of Opdivo – still no luck; c) Clinical trial IL-10 daily injections plus Keytruda.  This took us to January 2016 and during the three months on c)  there was a lot of progression including into bones (rib and spine).

                                                                    So next we decided on TIL (have been at MDA since the beginning), some of liver tumour was used for harvesting but we needed to slow things down fast so he did a chemo combo for a few cycles and then twice Opdivo/Ipi combo while we waited for TIL.  

                                                                    TIL went well in May (2.5 weeks in hospital), Low Dose IL-2 this time.  Unfortunately, not as many T-cells were harvested as hoped so the infusion was 4 billion but they were good quality.  I think they said 92% efficient or something like that.  Keytruda followed the TIL and we kept going on that until lumbar spine tumours got so painful that he needed radiation in August to try to relieve.  This was followed by liver radioembolization Y-90 spheres as liver situation was getting worse.  Unfortunately, the radiation on spine caused such inflammation to the largest tumour that it fractured the spine which resulted in emergency spine surgery end of August.

                                                                    In September, he started back on Keytruda and they did another Y-90 on the other lobe of the liver.  The good news at that time was that there was shrinkage from the procedure on the first lobe.  This was the first time in 2 years since diagnosis of stage 4 that anything had ever shrunk!  He has continued on Keytruda every 3 weeks and he will have body CT and MRI's of spine and brain in early January.  At that point we will know where we stand.

                                                                    In January we may be looking for another trial so this information you have provided is wonderful.  My husband is such a fighter (we have an 11-year-old son), and he has been to hell and back over the last two years, we keep buying time and trying to find the magic bullet he needs.

                                                                    Thank you again

                                                                    Maria

                                                                     

                                                                     

                                                                     

                                                                     

                                                                     

                                                                     

                                                                     

                                                                     

                                                                     

                                                                    _Paul_
                                                                    Participant

                                                                      Thank you very much for putting that together Celeste. For the first time in a long time I don't have a plan B and this list is going to be a great starting point for me.

                                                                      – Paulster

                                                                      _Paul_
                                                                      Participant

                                                                        Thank you very much for putting that together Celeste. For the first time in a long time I don't have a plan B and this list is going to be a great starting point for me.

                                                                        – Paulster

                                                                        _Paul_
                                                                        Participant

                                                                          Thank you very much for putting that together Celeste. For the first time in a long time I don't have a plan B and this list is going to be a great starting point for me.

                                                                          – Paulster

                                                                          Mat
                                                                          Participant

                                                                            Celeste, this is a wonderful gift to the Stage IV folks on this forum.  Like others have said, I appreciate and am grateful for all of the information you provide on this forum and your (awesome) website.

                                                                            Mat
                                                                            Participant

                                                                              Celeste, this is a wonderful gift to the Stage IV folks on this forum.  Like others have said, I appreciate and am grateful for all of the information you provide on this forum and your (awesome) website.

                                                                              Mat
                                                                              Participant

                                                                                Celeste, this is a wonderful gift to the Stage IV folks on this forum.  Like others have said, I appreciate and am grateful for all of the information you provide on this forum and your (awesome) website.

                                                                                keepthefaith11
                                                                                Participant
                                                                                  Celeste, I echo what others have said. After reading this post, all last night I was thinking about how you must have spent all day gathering this information. And all to help others. You are a wonderful angel on Earth and such a blessing to everyone around you!

                                                                                  Annie

                                                                                  keepthefaith11
                                                                                  Participant
                                                                                    Celeste, I echo what others have said. After reading this post, all last night I was thinking about how you must have spent all day gathering this information. And all to help others. You are a wonderful angel on Earth and such a blessing to everyone around you!

                                                                                    Annie

                                                                                    keepthefaith11
                                                                                    Participant
                                                                                      Celeste, I echo what others have said. After reading this post, all last night I was thinking about how you must have spent all day gathering this information. And all to help others. You are a wonderful angel on Earth and such a blessing to everyone around you!

                                                                                      Annie

                                                                                      ed williams
                                                                                      Participant

                                                                                        Hi Celeste, just thought I might add another link for Josh and others to look at after they finish with your great list. I love the way drug companies come up with drug names and then make it so hard to get a description of what they are!!!! For example BMS-986205 that you have as your second on the list. I will take your word that it is a IDO inhibitor since I couldn't find out what the hell it was on my own. So, one of my favorite people to get information from is Dr. Omid Hamid of the Angeles Clinic and here is the link to the clinics page of clinical trials, and just scroll down to Melanoma and you will find 3 or 4 different categories for Melanoma. http://www.theangelesclinic.org/Home/ResearchClinicalTrials/ClinicalTrialList/tabid/19278/Default.aspx  I would just like to point out  that many of the new trials are using other Inhibitory signal pathways similiar to Ipi and Pd-1 like Tim-3, Vista and Lag-3. There are also some new drugs that are using the coactivation signal or stimulation signal on t-cells like OX-40, Gitr, CD137, CD27, CD28. I would like to also add how much I enjoy going to Celeste blog, oh bye the way where did you find that cute model for all your clothes? Best Wishes!!!!Ed

                                                                                        ed williams
                                                                                        Participant

                                                                                          Hi Celeste, just thought I might add another link for Josh and others to look at after they finish with your great list. I love the way drug companies come up with drug names and then make it so hard to get a description of what they are!!!! For example BMS-986205 that you have as your second on the list. I will take your word that it is a IDO inhibitor since I couldn't find out what the hell it was on my own. So, one of my favorite people to get information from is Dr. Omid Hamid of the Angeles Clinic and here is the link to the clinics page of clinical trials, and just scroll down to Melanoma and you will find 3 or 4 different categories for Melanoma. http://www.theangelesclinic.org/Home/ResearchClinicalTrials/ClinicalTrialList/tabid/19278/Default.aspx  I would just like to point out  that many of the new trials are using other Inhibitory signal pathways similiar to Ipi and Pd-1 like Tim-3, Vista and Lag-3. There are also some new drugs that are using the coactivation signal or stimulation signal on t-cells like OX-40, Gitr, CD137, CD27, CD28. I would like to also add how much I enjoy going to Celeste blog, oh bye the way where did you find that cute model for all your clothes? Best Wishes!!!!Ed

                                                                                          ed williams
                                                                                          Participant

                                                                                            Hi Celeste, just thought I might add another link for Josh and others to look at after they finish with your great list. I love the way drug companies come up with drug names and then make it so hard to get a description of what they are!!!! For example BMS-986205 that you have as your second on the list. I will take your word that it is a IDO inhibitor since I couldn't find out what the hell it was on my own. So, one of my favorite people to get information from is Dr. Omid Hamid of the Angeles Clinic and here is the link to the clinics page of clinical trials, and just scroll down to Melanoma and you will find 3 or 4 different categories for Melanoma. http://www.theangelesclinic.org/Home/ResearchClinicalTrials/ClinicalTrialList/tabid/19278/Default.aspx  I would just like to point out  that many of the new trials are using other Inhibitory signal pathways similiar to Ipi and Pd-1 like Tim-3, Vista and Lag-3. There are also some new drugs that are using the coactivation signal or stimulation signal on t-cells like OX-40, Gitr, CD137, CD27, CD28. I would like to also add how much I enjoy going to Celeste blog, oh bye the way where did you find that cute model for all your clothes? Best Wishes!!!!Ed

                                                                                            Bubbles
                                                                                            Participant

                                                                                              Goodness, guys!!!  I am no angel…and have PLENTY of folks who would testify to that!!!  However, my heart is full with all the kindess you have shared.

                                                                                              Oddly enough, I did not do this research for myself.  But, I had a dedicated love who did.  I guess I feel that if I can help another in that way, I should.  I also imagine, that if one person is out-right asking the question, there have to be many more who need the same answer.  Access to real scientific information and trial data, as Jackie noted, is hard to come by.  I am lucky enough to have access to at least some of it and training that hopefully allows me to make it somewhat comprehensible.  Additionally, like most things in life, fighting melanoma takes a village.  To that point, we all know those, like my Edster and many others who routinely offer good contacts, sources, and intel.  However, you should also know that there is another entire group of folks who send me warm wishes and ideas on behalf of those who are struggling here.  I will not name them now as I figure if they wanted to be named, they would post these things themselves.  But…Josh and Paul…..you would be amazed at the love and hope that has been sent to me….to pass on to you.  So….here it is….  Hugs and support from the world over!!!! Really.

                                                                                              Ed, is exactly right.  His sources are spot on and there is hardly a better melanoma source than Dr. Hamid.  All the new inhibitors and compounds that are recently being combined with immunotherapy, or given on their own, are very exciting and I am sure that the coming years will find promise in at least several of them.  However, it is very frustrating (to say the least) that many that are currently in trials will not allow folks who have already utilized immunotherapy.  However, we will prevail!!!!

                                                                                              And because my cogs are always turning….my poor husband….imagine will you????!!!!!   I suddenly remembered a patient's report and found this:

                                                                                              https://clinicaltrials.gov/ct2/show/NCT02253992?term=urelumab&rank=5

                                                                                              A trial that is combining urelumab with nivo.  It is ongoing at Stanford in CA, Moffitt in FL, Chicago, John Hopkins in MD, Boston, NYU, Penn, Tx as well as France, Germany and Spain.  Perhaps more importantly, I know 2 melanoma patients who were in rather dire straits, progressing in a frightening way, after having been treated with most everything, now at Yale, who are taking this combo currently and are finally having a response and/or lack of progression.  It is early days, but something worth checking to my mind.  Here's a report (from the company, mind you!!!, but still…):  http://news.bms.com/press-release/bmy/phase-12-data-combining-urelumab-opdivo-nivolumab-hematologic-and-solid-tumors-sug

                                                                                              Oh, and Ed….that model???  Just a rattie…willing to put it on the line, while wishing she was a mouse!!!  Love and hope to each of you.  celeste

                                                                                              Bubbles
                                                                                              Participant

                                                                                                Goodness, guys!!!  I am no angel…and have PLENTY of folks who would testify to that!!!  However, my heart is full with all the kindess you have shared.

                                                                                                Oddly enough, I did not do this research for myself.  But, I had a dedicated love who did.  I guess I feel that if I can help another in that way, I should.  I also imagine, that if one person is out-right asking the question, there have to be many more who need the same answer.  Access to real scientific information and trial data, as Jackie noted, is hard to come by.  I am lucky enough to have access to at least some of it and training that hopefully allows me to make it somewhat comprehensible.  Additionally, like most things in life, fighting melanoma takes a village.  To that point, we all know those, like my Edster and many others who routinely offer good contacts, sources, and intel.  However, you should also know that there is another entire group of folks who send me warm wishes and ideas on behalf of those who are struggling here.  I will not name them now as I figure if they wanted to be named, they would post these things themselves.  But…Josh and Paul…..you would be amazed at the love and hope that has been sent to me….to pass on to you.  So….here it is….  Hugs and support from the world over!!!! Really.

                                                                                                Ed, is exactly right.  His sources are spot on and there is hardly a better melanoma source than Dr. Hamid.  All the new inhibitors and compounds that are recently being combined with immunotherapy, or given on their own, are very exciting and I am sure that the coming years will find promise in at least several of them.  However, it is very frustrating (to say the least) that many that are currently in trials will not allow folks who have already utilized immunotherapy.  However, we will prevail!!!!

                                                                                                And because my cogs are always turning….my poor husband….imagine will you????!!!!!   I suddenly remembered a patient's report and found this:

                                                                                                https://clinicaltrials.gov/ct2/show/NCT02253992?term=urelumab&rank=5

                                                                                                A trial that is combining urelumab with nivo.  It is ongoing at Stanford in CA, Moffitt in FL, Chicago, John Hopkins in MD, Boston, NYU, Penn, Tx as well as France, Germany and Spain.  Perhaps more importantly, I know 2 melanoma patients who were in rather dire straits, progressing in a frightening way, after having been treated with most everything, now at Yale, who are taking this combo currently and are finally having a response and/or lack of progression.  It is early days, but something worth checking to my mind.  Here's a report (from the company, mind you!!!, but still…):  http://news.bms.com/press-release/bmy/phase-12-data-combining-urelumab-opdivo-nivolumab-hematologic-and-solid-tumors-sug

                                                                                                Oh, and Ed….that model???  Just a rattie…willing to put it on the line, while wishing she was a mouse!!!  Love and hope to each of you.  celeste

                                                                                                  Bubbles
                                                                                                  Participant

                                                                                                    P.S.  As to BMS-986205:  I think that is an IDO inhibitor….but it is not at all clear. The trial site is not forthcoming and data is hard to find.  It really shouldn't be this hard!!!!!  For what it's worth….c

                                                                                                    Bubbles
                                                                                                    Participant

                                                                                                      P.S.  As to BMS-986205:  I think that is an IDO inhibitor….but it is not at all clear. The trial site is not forthcoming and data is hard to find.  It really shouldn't be this hard!!!!!  For what it's worth….c

                                                                                                      Bubbles
                                                                                                      Participant

                                                                                                        P.S.  As to BMS-986205:  I think that is an IDO inhibitor….but it is not at all clear. The trial site is not forthcoming and data is hard to find.  It really shouldn't be this hard!!!!!  For what it's worth….c

                                                                                                      Bubbles
                                                                                                      Participant

                                                                                                        Goodness, guys!!!  I am no angel…and have PLENTY of folks who would testify to that!!!  However, my heart is full with all the kindess you have shared.

                                                                                                        Oddly enough, I did not do this research for myself.  But, I had a dedicated love who did.  I guess I feel that if I can help another in that way, I should.  I also imagine, that if one person is out-right asking the question, there have to be many more who need the same answer.  Access to real scientific information and trial data, as Jackie noted, is hard to come by.  I am lucky enough to have access to at least some of it and training that hopefully allows me to make it somewhat comprehensible.  Additionally, like most things in life, fighting melanoma takes a village.  To that point, we all know those, like my Edster and many others who routinely offer good contacts, sources, and intel.  However, you should also know that there is another entire group of folks who send me warm wishes and ideas on behalf of those who are struggling here.  I will not name them now as I figure if they wanted to be named, they would post these things themselves.  But…Josh and Paul…..you would be amazed at the love and hope that has been sent to me….to pass on to you.  So….here it is….  Hugs and support from the world over!!!! Really.

                                                                                                        Ed, is exactly right.  His sources are spot on and there is hardly a better melanoma source than Dr. Hamid.  All the new inhibitors and compounds that are recently being combined with immunotherapy, or given on their own, are very exciting and I am sure that the coming years will find promise in at least several of them.  However, it is very frustrating (to say the least) that many that are currently in trials will not allow folks who have already utilized immunotherapy.  However, we will prevail!!!!

                                                                                                        And because my cogs are always turning….my poor husband….imagine will you????!!!!!   I suddenly remembered a patient's report and found this:

                                                                                                        https://clinicaltrials.gov/ct2/show/NCT02253992?term=urelumab&rank=5

                                                                                                        A trial that is combining urelumab with nivo.  It is ongoing at Stanford in CA, Moffitt in FL, Chicago, John Hopkins in MD, Boston, NYU, Penn, Tx as well as France, Germany and Spain.  Perhaps more importantly, I know 2 melanoma patients who were in rather dire straits, progressing in a frightening way, after having been treated with most everything, now at Yale, who are taking this combo currently and are finally having a response and/or lack of progression.  It is early days, but something worth checking to my mind.  Here's a report (from the company, mind you!!!, but still…):  http://news.bms.com/press-release/bmy/phase-12-data-combining-urelumab-opdivo-nivolumab-hematologic-and-solid-tumors-sug

                                                                                                        Oh, and Ed….that model???  Just a rattie…willing to put it on the line, while wishing she was a mouse!!!  Love and hope to each of you.  celeste

                                                                                                        Bubbles
                                                                                                        Participant

                                                                                                          Thanks to my amazing dear one Eric and his tireless efforts on behalf of all of us!!!…..we have this bit of intel from a CV of sorts….but here is the pertinent part:

                                                                                                          "Significant Accomplishments in Drug Discovery at Flexus Biosciences

                                                                                                          I oversaw discovery and/or development of several clinical candidates:

                                                                                                          FLX287 (BMS-986205) (Solid and hematological tumors) Selective inhibitor of IDO1.  Acquired by BMS in April 2015 in connection with the acquisition of Flexus Biosciences, Phase 1 trial (combination with nivo) initiated February 2016."

                                                                                                          Obviously the "I" is neither myself nor Eric but the guy on the CV.  Anyhow…guess we all have to be thankful for the internet, good friends and the fact that drug company and business big whigs like to post crap. 

                                                                                                          But….I know what I'm gonna do in my next life….be a PI!!!!   And I know exactly the peeps I want on my team.

                                                                                                          Love to you all.  Celeste

                                                                                                           

                                                                                                           

                                                                                                          Bubbles
                                                                                                          Participant

                                                                                                            Thanks to my amazing dear one Eric and his tireless efforts on behalf of all of us!!!…..we have this bit of intel from a CV of sorts….but here is the pertinent part:

                                                                                                            "Significant Accomplishments in Drug Discovery at Flexus Biosciences

                                                                                                            I oversaw discovery and/or development of several clinical candidates:

                                                                                                            FLX287 (BMS-986205) (Solid and hematological tumors) Selective inhibitor of IDO1.  Acquired by BMS in April 2015 in connection with the acquisition of Flexus Biosciences, Phase 1 trial (combination with nivo) initiated February 2016."

                                                                                                            Obviously the "I" is neither myself nor Eric but the guy on the CV.  Anyhow…guess we all have to be thankful for the internet, good friends and the fact that drug company and business big whigs like to post crap. 

                                                                                                            But….I know what I'm gonna do in my next life….be a PI!!!!   And I know exactly the peeps I want on my team.

                                                                                                            Love to you all.  Celeste

                                                                                                             

                                                                                                             

                                                                                                            Bubbles
                                                                                                            Participant

                                                                                                              Thanks to my amazing dear one Eric and his tireless efforts on behalf of all of us!!!…..we have this bit of intel from a CV of sorts….but here is the pertinent part:

                                                                                                              "Significant Accomplishments in Drug Discovery at Flexus Biosciences

                                                                                                              I oversaw discovery and/or development of several clinical candidates:

                                                                                                              FLX287 (BMS-986205) (Solid and hematological tumors) Selective inhibitor of IDO1.  Acquired by BMS in April 2015 in connection with the acquisition of Flexus Biosciences, Phase 1 trial (combination with nivo) initiated February 2016."

                                                                                                              Obviously the "I" is neither myself nor Eric but the guy on the CV.  Anyhow…guess we all have to be thankful for the internet, good friends and the fact that drug company and business big whigs like to post crap. 

                                                                                                              But….I know what I'm gonna do in my next life….be a PI!!!!   And I know exactly the peeps I want on my team.

                                                                                                              Love to you all.  Celeste

                                                                                                               

                                                                                                               

                                                                                                              Bubbles
                                                                                                              Participant

                                                                                                                Keep in mind…I ain't selling this mess….but there is this as well (see page 13):

                                                                                                                http://files.shareholder.com/downloads/AMDA-NRWRB/0x0x913425/E9A01152-AD75-4DB8-ABAA-11FBBB492016/NewLink_Analyst_Day_Master_Deck_10.24.16_FINAL_521_PM.pdf

                                                                                                                Eric rocks!  I'm telling you!! – c

                                                                                                                Bubbles
                                                                                                                Participant

                                                                                                                  Keep in mind…I ain't selling this mess….but there is this as well (see page 13):

                                                                                                                  http://files.shareholder.com/downloads/AMDA-NRWRB/0x0x913425/E9A01152-AD75-4DB8-ABAA-11FBBB492016/NewLink_Analyst_Day_Master_Deck_10.24.16_FINAL_521_PM.pdf

                                                                                                                  Eric rocks!  I'm telling you!! – c

                                                                                                                  Bubbles
                                                                                                                  Participant

                                                                                                                    Keep in mind…I ain't selling this mess….but there is this as well (see page 13):

                                                                                                                    http://files.shareholder.com/downloads/AMDA-NRWRB/0x0x913425/E9A01152-AD75-4DB8-ABAA-11FBBB492016/NewLink_Analyst_Day_Master_Deck_10.24.16_FINAL_521_PM.pdf

                                                                                                                    Eric rocks!  I'm telling you!! – c

                                                                                                                    BrianP
                                                                                                                    Participant

                                                                                                                      Celeste,

                                                                                                                      I'd like to start out my post by saying you suck simply so your head doesn't explode from all the praise you are receiving on this thread;)

                                                                                                                      In all serious though thank you so much for putting this together.  Even though I know you have help I also know that it is no small effort to gather the info and present it as well as you do.  This thread is definitely giving me more hope and that can make all the difference.

                                                                                                                      Love,

                                                                                                                      Brian

                                                                                                                        Bubbles
                                                                                                                        Participant

                                                                                                                          Thanks, Brian!!  Head definitely appropriately sized!!  Hee hee!  Glad you can find some options that you might consider here.  Fingers and toes crossed that you will need none of it!!! love, c

                                                                                                                          Bubbles
                                                                                                                          Participant

                                                                                                                            Thanks, Brian!!  Head definitely appropriately sized!!  Hee hee!  Glad you can find some options that you might consider here.  Fingers and toes crossed that you will need none of it!!! love, c

                                                                                                                            Bubbles
                                                                                                                            Participant

                                                                                                                              Thanks, Brian!!  Head definitely appropriately sized!!  Hee hee!  Glad you can find some options that you might consider here.  Fingers and toes crossed that you will need none of it!!! love, c

                                                                                                                            BrianP
                                                                                                                            Participant

                                                                                                                              Celeste,

                                                                                                                              I'd like to start out my post by saying you suck simply so your head doesn't explode from all the praise you are receiving on this thread;)

                                                                                                                              In all serious though thank you so much for putting this together.  Even though I know you have help I also know that it is no small effort to gather the info and present it as well as you do.  This thread is definitely giving me more hope and that can make all the difference.

                                                                                                                              Love,

                                                                                                                              Brian

                                                                                                                              BrianP
                                                                                                                              Participant

                                                                                                                                Celeste,

                                                                                                                                I'd like to start out my post by saying you suck simply so your head doesn't explode from all the praise you are receiving on this thread;)

                                                                                                                                In all serious though thank you so much for putting this together.  Even though I know you have help I also know that it is no small effort to gather the info and present it as well as you do.  This thread is definitely giving me more hope and that can make all the difference.

                                                                                                                                Love,

                                                                                                                                Brian

                                                                                                                                snow white
                                                                                                                                Participant

                                                                                                                                  Thank you our dear Celeste for all that you do!!!  I can't even imagine the task of putting this together even with help, its all so confusing.  I don't know that I need the info right now for my Dad, but it is such a relief knowing that its there for the future.  I appreciate all of your efforts.

                                                                                                                                  Jen

                                                                                                                                  snow white
                                                                                                                                  Participant

                                                                                                                                    Thank you our dear Celeste for all that you do!!!  I can't even imagine the task of putting this together even with help, its all so confusing.  I don't know that I need the info right now for my Dad, but it is such a relief knowing that its there for the future.  I appreciate all of your efforts.

                                                                                                                                    Jen

                                                                                                                                    snow white
                                                                                                                                    Participant

                                                                                                                                      Thank you our dear Celeste for all that you do!!!  I can't even imagine the task of putting this together even with help, its all so confusing.  I don't know that I need the info right now for my Dad, but it is such a relief knowing that its there for the future.  I appreciate all of your efforts.

                                                                                                                                      Jen

                                                                                                                                      cancersnewnormal
                                                                                                                                      Participant

                                                                                                                                        Holy wow… this thread was a lot of reading.  : )  Celeste, THANK YOU for compiling the latest info in one bookmarkable blog page! There is a comfort factor in seeing all of the potential opportunities in current research. Have you ever read "The Tipping Point" by Malcom Gladwell? You are both a "connector" and a "maven", putting you in a rare breed category. The book is more about marketing success and how things become fads….. but the worker bee personality types that he describes are fitting for nearly everything that ends up successful. Anyway, side track aside… thank you.  : )

                                                                                                                                        cancersnewnormal
                                                                                                                                        Participant

                                                                                                                                          Holy wow… this thread was a lot of reading.  : )  Celeste, THANK YOU for compiling the latest info in one bookmarkable blog page! There is a comfort factor in seeing all of the potential opportunities in current research. Have you ever read "The Tipping Point" by Malcom Gladwell? You are both a "connector" and a "maven", putting you in a rare breed category. The book is more about marketing success and how things become fads….. but the worker bee personality types that he describes are fitting for nearly everything that ends up successful. Anyway, side track aside… thank you.  : )

                                                                                                                                          cancersnewnormal
                                                                                                                                          Participant

                                                                                                                                            Holy wow… this thread was a lot of reading.  : )  Celeste, THANK YOU for compiling the latest info in one bookmarkable blog page! There is a comfort factor in seeing all of the potential opportunities in current research. Have you ever read "The Tipping Point" by Malcom Gladwell? You are both a "connector" and a "maven", putting you in a rare breed category. The book is more about marketing success and how things become fads….. but the worker bee personality types that he describes are fitting for nearly everything that ends up successful. Anyway, side track aside… thank you.  : )

                                                                                                                                            jenny22
                                                                                                                                            Participant

                                                                                                                                              Hi Celeste-

                                                                                                                                              I just had to chime in with everyone else….doing what you do takes so much time, of which none of  us has enough!!!

                                                                                                                                              (yikes had to get that grammar right…My Dad would kill me if i ended that senetence with a preposition)

                                                                                                                                              In all seriousness……you are an invaluable resource to this group…..as i said recently i am always waiting for the other shoe to drop…..I have been stage 3b for 2 years….and so afraid of when (and hopefully never) that may change.

                                                                                                                                              I hope you have a great holiday with your family. and again heartfelt thanks for your MANY contributions to everyone here.

                                                                                                                                               

                                                                                                                                              Best,

                                                                                                                                              Jenny

                                                                                                                                              jenny22
                                                                                                                                              Participant

                                                                                                                                                Hi Celeste-

                                                                                                                                                I just had to chime in with everyone else….doing what you do takes so much time, of which none of  us has enough!!!

                                                                                                                                                (yikes had to get that grammar right…My Dad would kill me if i ended that senetence with a preposition)

                                                                                                                                                In all seriousness……you are an invaluable resource to this group…..as i said recently i am always waiting for the other shoe to drop…..I have been stage 3b for 2 years….and so afraid of when (and hopefully never) that may change.

                                                                                                                                                I hope you have a great holiday with your family. and again heartfelt thanks for your MANY contributions to everyone here.

                                                                                                                                                 

                                                                                                                                                Best,

                                                                                                                                                Jenny

                                                                                                                                                jenny22
                                                                                                                                                Participant

                                                                                                                                                  Hi Celeste-

                                                                                                                                                  I just had to chime in with everyone else….doing what you do takes so much time, of which none of  us has enough!!!

                                                                                                                                                  (yikes had to get that grammar right…My Dad would kill me if i ended that senetence with a preposition)

                                                                                                                                                  In all seriousness……you are an invaluable resource to this group…..as i said recently i am always waiting for the other shoe to drop…..I have been stage 3b for 2 years….and so afraid of when (and hopefully never) that may change.

                                                                                                                                                  I hope you have a great holiday with your family. and again heartfelt thanks for your MANY contributions to everyone here.

                                                                                                                                                   

                                                                                                                                                  Best,

                                                                                                                                                  Jenny

                                                                                                                                                  Cindyco
                                                                                                                                                  Participant

                                                                                                                                                    One more thank you to Celeste for all of her kindness to everyone on the forums and her willingness to stay involved and share so much information to us.  We are truly grateful to you Celeste!

                                                                                                                                                    Cindyco
                                                                                                                                                    Participant

                                                                                                                                                      One more thank you to Celeste for all of her kindness to everyone on the forums and her willingness to stay involved and share so much information to us.  We are truly grateful to you Celeste!

                                                                                                                                                      Cindyco
                                                                                                                                                      Participant

                                                                                                                                                        One more thank you to Celeste for all of her kindness to everyone on the forums and her willingness to stay involved and share so much information to us.  We are truly grateful to you Celeste!

                                                                                                                                                        Jess58
                                                                                                                                                        Participant
                                                                                                                                                          Hi we contacted Moffitt in Florida regarding the below trial posted by Celeste and they said that the trial is on hold. does anyone know if the trial is a go at any of the location as we are willing to travel. we are getting desperate as she has been disqualified for all trials up to now by her concurrent condition of follicular lymphoma.

                                                                                                                                                          The trial we are interested in is

                                                                                                                                                          “Study of the Safety and Tolerability of Urelumab Administered in Combination With Nivolumab in Solid Tumors and B-cell Non-Hodgkins Lymphoma”

                                                                                                                                                          Thanks for any information.

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