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Lung involvement

Forums General Melanoma Community Lung involvement

  • Post
    vickiaa0529
    Participant

      Hi 

      I been lurking for a while and rooting for you all with lots of prayers and positive energy. I just finished four rounds of ipi just had scans and now there are new lesions on my lungs. New choice is a trial with Nivo and Dab Tram or Keytruda? 

      This is a MDA trail. Has anyone tried it or any thoughts?

       

      thanks 

      vicki

    Viewing 8 reply threads
    • Replies
        Bubbles
        Participant

          Sorry Vicki!  Here's a post with lots of links within….that addresses immunotherapy combined with BRAF/MEK:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/11/brafmek-combined-with-immunotherapy.html

          It looks pretty promising.  Hang in there!  Celeste

          Bubbles
          Participant

            Sorry Vicki!  Here's a post with lots of links within….that addresses immunotherapy combined with BRAF/MEK:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/11/brafmek-combined-with-immunotherapy.html

            It looks pretty promising.  Hang in there!  Celeste

            Bubbles
            Participant

              Sorry Vicki!  Here's a post with lots of links within….that addresses immunotherapy combined with BRAF/MEK:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/11/brafmek-combined-with-immunotherapy.html

              It looks pretty promising.  Hang in there!  Celeste

                vickiaa0529
                Participant

                  I'm leaning towards this one 

                  once again thanks for the info 

                  vickiaa0529
                  Participant

                    I'm leaning towards this one 

                    once again thanks for the info 

                    vickiaa0529
                    Participant

                      I'm leaning towards this one 

                      once again thanks for the info 

                    Charlie S
                    Participant

                      Hi ya, VickiLurk………….**smile**

                      The trouble with IPI is that , if it is going to work, it takes a long time to tell and that is frustrating.

                      Now, what about the lung lesions.  

                      They are bilateral?  Both lungs and what size and how many?

                      Are any of them operative?

                      Are you symptomatic in any way?  Coughing, trouble breathing, congestion, shortness of breath?

                      Oh yeah………………..and who won the World Series in 1939?

                      Just kidding, sorry for the questions.

                      I did ipilimumab a few times and was not impressed; then again I am not easily impressed.  Did not work for a lung met.

                      Ended up having a wedge dissection in my right lung.    That worked.

                      Well (sigh) for a bit; anyway after several attempts of living better through chemistry in many ways (IL2) the drug dealer hit me up with Keytruda.

                      So far, after shooting up four times my body is not driving me crazy.

                      I have personal experience with MDA and they are great.  

                      But juuuuuuuuuuuuuuuuust as a consideration, outside of surgery what is the argument not to try Keytruda right now.

                      If it works, it can show results in 60 days or less.

                      I do not know whether doing Keytruda colors the trial enrollment you are speaking of.

                      It is fair to say though that Keytruda alone is working for some; no not all, but NO treatment is.

                      Just thinking outloud.

                      I live by myself so the noise doesn't bother me.

                      I wish you well.

                       

                      Cheers,

                      Charlie

                       

                       

                        vickiaa0529
                        Participant

                          Hi 

                          No symptoms whatsoever. My CT experience yesterday was a nightmare I got there at 10:30 am and did not get back to the hotel until 7:30pm. Needless to say all of my results were not in just the images. Small lesions on both lungs the right lung appeared to be about an inch? Ish. Surgery was not an option. It seems like combining the BRAF drugs with Nivo may be the hammer to knock this to the curb. But Keytruda would fit my lifestyle better. I do not want to live in Houston for three years. I'm longing to go back to Seattle. 

                          Cheers

                          vicki

                          Charlie S
                          Participant

                            You are not an experiment, you are Vicki.

                            You are Vicki.

                            How you live to be Vicki is the best for you.

                             

                            Cheers,

                            Charlie S

                            Charlie S
                            Participant

                              You are not an experiment, you are Vicki.

                              You are Vicki.

                              How you live to be Vicki is the best for you.

                               

                              Cheers,

                              Charlie S

                              Charlie S
                              Participant

                                You are not an experiment, you are Vicki.

                                You are Vicki.

                                How you live to be Vicki is the best for you.

                                 

                                Cheers,

                                Charlie S

                                vickiaa0529
                                Participant

                                  That is true ! Thanks 

                                  vickiaa0529
                                  Participant

                                    That is true ! Thanks 

                                    vickiaa0529
                                    Participant

                                      That is true ! Thanks 

                                      adriana cooper
                                      Participant

                                        Why not return to Seattle? Have you been working with someone there after Dr. Byrd ( a great man, BTW) Maybe contact me off list if you like. [email protected] Adriana has been at SCCA since 2012.

                                        Rob

                                        adriana cooper
                                        Participant

                                          Why not return to Seattle? Have you been working with someone there after Dr. Byrd ( a great man, BTW) Maybe contact me off list if you like. [email protected] Adriana has been at SCCA since 2012.

                                          Rob

                                          adriana cooper
                                          Participant

                                            Why not return to Seattle? Have you been working with someone there after Dr. Byrd ( a great man, BTW) Maybe contact me off list if you like. [email protected] Adriana has been at SCCA since 2012.

                                            Rob

                                            vickiaa0529
                                            Participant

                                              Hi 

                                              No symptoms whatsoever. My CT experience yesterday was a nightmare I got there at 10:30 am and did not get back to the hotel until 7:30pm. Needless to say all of my results were not in just the images. Small lesions on both lungs the right lung appeared to be about an inch? Ish. Surgery was not an option. It seems like combining the BRAF drugs with Nivo may be the hammer to knock this to the curb. But Keytruda would fit my lifestyle better. I do not want to live in Houston for three years. I'm longing to go back to Seattle. 

                                              Cheers

                                              vicki

                                              vickiaa0529
                                              Participant

                                                Hi 

                                                No symptoms whatsoever. My CT experience yesterday was a nightmare I got there at 10:30 am and did not get back to the hotel until 7:30pm. Needless to say all of my results were not in just the images. Small lesions on both lungs the right lung appeared to be about an inch? Ish. Surgery was not an option. It seems like combining the BRAF drugs with Nivo may be the hammer to knock this to the curb. But Keytruda would fit my lifestyle better. I do not want to live in Houston for three years. I'm longing to go back to Seattle. 

                                                Cheers

                                                vicki

                                              Charlie S
                                              Participant

                                                Hi ya, VickiLurk………….**smile**

                                                The trouble with IPI is that , if it is going to work, it takes a long time to tell and that is frustrating.

                                                Now, what about the lung lesions.  

                                                They are bilateral?  Both lungs and what size and how many?

                                                Are any of them operative?

                                                Are you symptomatic in any way?  Coughing, trouble breathing, congestion, shortness of breath?

                                                Oh yeah………………..and who won the World Series in 1939?

                                                Just kidding, sorry for the questions.

                                                I did ipilimumab a few times and was not impressed; then again I am not easily impressed.  Did not work for a lung met.

                                                Ended up having a wedge dissection in my right lung.    That worked.

                                                Well (sigh) for a bit; anyway after several attempts of living better through chemistry in many ways (IL2) the drug dealer hit me up with Keytruda.

                                                So far, after shooting up four times my body is not driving me crazy.

                                                I have personal experience with MDA and they are great.  

                                                But juuuuuuuuuuuuuuuuust as a consideration, outside of surgery what is the argument not to try Keytruda right now.

                                                If it works, it can show results in 60 days or less.

                                                I do not know whether doing Keytruda colors the trial enrollment you are speaking of.

                                                It is fair to say though that Keytruda alone is working for some; no not all, but NO treatment is.

                                                Just thinking outloud.

                                                I live by myself so the noise doesn't bother me.

                                                I wish you well.

                                                 

                                                Cheers,

                                                Charlie

                                                 

                                                 

                                                Charlie S
                                                Participant

                                                  Hi ya, VickiLurk………….**smile**

                                                  The trouble with IPI is that , if it is going to work, it takes a long time to tell and that is frustrating.

                                                  Now, what about the lung lesions.  

                                                  They are bilateral?  Both lungs and what size and how many?

                                                  Are any of them operative?

                                                  Are you symptomatic in any way?  Coughing, trouble breathing, congestion, shortness of breath?

                                                  Oh yeah………………..and who won the World Series in 1939?

                                                  Just kidding, sorry for the questions.

                                                  I did ipilimumab a few times and was not impressed; then again I am not easily impressed.  Did not work for a lung met.

                                                  Ended up having a wedge dissection in my right lung.    That worked.

                                                  Well (sigh) for a bit; anyway after several attempts of living better through chemistry in many ways (IL2) the drug dealer hit me up with Keytruda.

                                                  So far, after shooting up four times my body is not driving me crazy.

                                                  I have personal experience with MDA and they are great.  

                                                  But juuuuuuuuuuuuuuuuust as a consideration, outside of surgery what is the argument not to try Keytruda right now.

                                                  If it works, it can show results in 60 days or less.

                                                  I do not know whether doing Keytruda colors the trial enrollment you are speaking of.

                                                  It is fair to say though that Keytruda alone is working for some; no not all, but NO treatment is.

                                                  Just thinking outloud.

                                                  I live by myself so the noise doesn't bother me.

                                                  I wish you well.

                                                   

                                                  Cheers,

                                                  Charlie

                                                   

                                                   

                                                  Mat
                                                  Participant

                                                    It is possible to combine those meds off trial with cooperation from your onc.

                                                    Mat
                                                    Participant

                                                      It is possible to combine those meds off trial with cooperation from your onc.

                                                        vickiaa0529
                                                        Participant

                                                          Really that would be awesome more flexibility 

                                                          thanks 

                                                          vickiaa0529
                                                          Participant

                                                            Really that would be awesome more flexibility 

                                                            thanks 

                                                            vickiaa0529
                                                            Participant

                                                              Really that would be awesome more flexibility 

                                                              thanks 

                                                            Mat
                                                            Participant

                                                              It is possible to combine those meds off trial with cooperation from your onc.

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