Update

  • Post
    NYKaren
    Participant

      Hi guys,

      I had scans the last week in Dec. and they show no mel inside my body.  I'm very happy about that.

      However, since my last IL-2 round, i have had a proliferation of satellites on my face.  My main area of mel is on my temple between my ear & eye.  Now there are sats up on my scalp and down my face, including my jaw and possibly my neck.

      Hi guys,

      I had scans the last week in Dec. and they show no mel inside my body.  I'm very happy about that.

      However, since my last IL-2 round, i have had a proliferation of satellites on my face.  My main area of mel is on my temple between my ear & eye.  Now there are sats up on my scalp and down my face, including my jaw and possibly my neck.

      My docs and I were hoping I'd be in the Curetech anti-PD1 trial by now; Curetech won't take me at all.  ONLY Stage IV, and they don't like the fact that the site's been irradiated, even though it was 9 months ago.  Dr. W called and begged, they won't back down.

      Needless to say, I'm not a happy camper.

      So it looks like for now, I'll be starting Temodar and Dr. Halpern will remove all the satellites via laser, injection, or something else.  I'm seeing him NEXT monday after I see Dr. Wolchok  this coming Thursday.  Dr. Halpern has me using Aldera on half my face to see if I am responding to it versus the other half.  (It's easy to see that it worked great w/the IL-2, not so easy to see otherwise.)  It looks like there is a flattening, so that's a good sign.

      Dr. W said that chemo does not have a great track record w/mel, but that he has had one patient in particular whose leg was covered in it, and he had a complete response w/Temodar.  His goal is not a complete or sustained response, but hopefully an arrest of the dermal spread.

      He also mentioned my going to NIH, but right now we're trying this to get me safely to an Anti PD-1 trial w/more accepting criteria.  I guess we have a lot to talk about this Thursday.

      Also, we think that I responded to IL-2 for the first round because it was right after Ipi.  I strongly feel that I was a partial responder to Ipi, and we did discuss re-induction.  

      So that's my story for now.  To be continued… I thank everyone for all your support…I honestly don't know where I'd be without you all.

      karen

    Viewing 5 reply threads
    • Replies
        washoegal
        Participant

          Karen,

          Sorry you are having such a tough time but sounds like you have a great team pull for you.  I'm sure the location of the satellites doesn't help much.  But there is something out there that is going to work for you, I just have that feeling.  Keep up a good fight. 

          Mary

          Stage 3

            NYKaren
            Participant

              Thanks, Mary.  I (usually) have that feeling too.

              killmel
              Participant

                Karen,

                 

                It is very discouraging when you can not get into a trial. Curetech is not the only Anti-pd1 trial.

                 

                Even if Curetech will not take stage 3, here is a Anti=pd1 trial by Merck. It does not state which stages qualify for the trial. Part B is for Mel patients. You might want to look into other site location that will be opening: I understand there will be lotsof seats & location sites available.  May I suggest that your doc call Merck.

                http://clinicaltrials.gov/ct2/show/NCT01295827

                 

                Good Luck & keep us posted?

                Mary

                NYKaren
                Participant

                  Thanks, Mary…unfortunately, my mel is NOT measurable by imaging…but it is measurable via biopsy and in plain sight!  Yes, he will have to call Merck and also GSK.  SOMETHING will work out!

                  NYKaren
                  Participant

                    Thanks, Mary…unfortunately, my mel is NOT measurable by imaging…but it is measurable via biopsy and in plain sight!  Yes, he will have to call Merck and also GSK.  SOMETHING will work out!

                    NYKaren
                    Participant

                      Thanks, Mary…unfortunately, my mel is NOT measurable by imaging…but it is measurable via biopsy and in plain sight!  Yes, he will have to call Merck and also GSK.  SOMETHING will work out!

                      killmel
                      Participant

                        Karen,

                         

                        It is very discouraging when you can not get into a trial. Curetech is not the only Anti-pd1 trial.

                         

                        Even if Curetech will not take stage 3, here is a Anti=pd1 trial by Merck. It does not state which stages qualify for the trial. Part B is for Mel patients. You might want to look into other site location that will be opening: I understand there will be lotsof seats & location sites available.  May I suggest that your doc call Merck.

                        http://clinicaltrials.gov/ct2/show/NCT01295827

                         

                        Good Luck & keep us posted?

                        Mary

                        killmel
                        Participant

                          Karen,

                           

                          It is very discouraging when you can not get into a trial. Curetech is not the only Anti-pd1 trial.

                           

                          Even if Curetech will not take stage 3, here is a Anti=pd1 trial by Merck. It does not state which stages qualify for the trial. Part B is for Mel patients. You might want to look into other site location that will be opening: I understand there will be lotsof seats & location sites available.  May I suggest that your doc call Merck.

                          http://clinicaltrials.gov/ct2/show/NCT01295827

                           

                          Good Luck & keep us posted?

                          Mary

                          NYKaren
                          Participant

                            Thanks, Mary.  I (usually) have that feeling too.

                            NYKaren
                            Participant

                              Thanks, Mary.  I (usually) have that feeling too.

                            washoegal
                            Participant

                              Karen,

                              Sorry you are having such a tough time but sounds like you have a great team pull for you.  I'm sure the location of the satellites doesn't help much.  But there is something out there that is going to work for you, I just have that feeling.  Keep up a good fight. 

                              Mary

                              Stage 3

                              washoegal
                              Participant

                                Karen,

                                Sorry you are having such a tough time but sounds like you have a great team pull for you.  I'm sure the location of the satellites doesn't help much.  But there is something out there that is going to work for you, I just have that feeling.  Keep up a good fight. 

                                Mary

                                Stage 3

                                jim Breitfeller
                                Participant

                                  Karen,

                                  Have Dr. W look into anti-IL-8  (Abx-IL-8). This antibody significantly inhibited the expression, activity, and transcription of MMP-2 and MMP-9, resulting in decreased invasion of the Melanoma.  This should slowdown the spread and if you follow up with Yervoy again and systematically added IL-2 at day 50, you may get the response you are looking for.

                                  All the best

                                   

                                  Jimmy B

                                  jim Breitfeller
                                  Participant

                                    Karen,

                                    Have Dr. W look into anti-IL-8  (Abx-IL-8). This antibody significantly inhibited the expression, activity, and transcription of MMP-2 and MMP-9, resulting in decreased invasion of the Melanoma.  This should slowdown the spread and if you follow up with Yervoy again and systematically added IL-2 at day 50, you may get the response you are looking for.

                                    All the best

                                     

                                    Jimmy B

                                      NYKaren
                                      Participant

                                        Jimmy,

                                        I copied this and will take it with me on Thursday.  Frankly, I googled it, and it's all Greek to me.  All i know is that it has something to do with rabbits and mice.  (I only had time to do a superficial search…I'll really look later.)

                                        Thanks!

                                        NYKaren
                                        Participant

                                          Jimmy,

                                          I copied this and will take it with me on Thursday.  Frankly, I googled it, and it's all Greek to me.  All i know is that it has something to do with rabbits and mice.  (I only had time to do a superficial search…I'll really look later.)

                                          Thanks!

                                          jim Breitfeller
                                          Participant

                                            Karen,

                                            Interleukin-8 (IL-8) has recently been shown to contribute to human melanoma progression by functioning as a mitogenic and angiogenic factor. In a study, they investigated whether targeting IL-8 by a fully human anti-IL-8 antibody (ABX-IL8) could be a potential therapeutic strategy to control angiogenesis, growth, and metastasis of melanoma.

                                            In vivo, ABX-IL8 treatment resulted in decreased expression of matrix metalloproteinase-2, and decreased vascularization (angiogenesis) of tumors concomitant with increased apoptosis (Death) of tumor cells.

                                             

                                            Jimmy B

                                            jim Breitfeller
                                            Participant

                                              Karen,

                                              Interleukin-8 (IL-8) has recently been shown to contribute to human melanoma progression by functioning as a mitogenic and angiogenic factor. In a study, they investigated whether targeting IL-8 by a fully human anti-IL-8 antibody (ABX-IL8) could be a potential therapeutic strategy to control angiogenesis, growth, and metastasis of melanoma.

                                              In vivo, ABX-IL8 treatment resulted in decreased expression of matrix metalloproteinase-2, and decreased vascularization (angiogenesis) of tumors concomitant with increased apoptosis (Death) of tumor cells.

                                               

                                              Jimmy B

                                              jim Breitfeller
                                              Participant

                                                Karen,

                                                Interleukin-8 (IL-8) has recently been shown to contribute to human melanoma progression by functioning as a mitogenic and angiogenic factor. In a study, they investigated whether targeting IL-8 by a fully human anti-IL-8 antibody (ABX-IL8) could be a potential therapeutic strategy to control angiogenesis, growth, and metastasis of melanoma.

                                                In vivo, ABX-IL8 treatment resulted in decreased expression of matrix metalloproteinase-2, and decreased vascularization (angiogenesis) of tumors concomitant with increased apoptosis (Death) of tumor cells.

                                                 

                                                Jimmy B

                                                NYKaren
                                                Participant

                                                  Jimmy,

                                                  I copied this and will take it with me on Thursday.  Frankly, I googled it, and it's all Greek to me.  All i know is that it has something to do with rabbits and mice.  (I only had time to do a superficial search…I'll really look later.)

                                                  Thanks!

                                                jim Breitfeller
                                                Participant

                                                  Karen,

                                                  Have Dr. W look into anti-IL-8  (Abx-IL-8). This antibody significantly inhibited the expression, activity, and transcription of MMP-2 and MMP-9, resulting in decreased invasion of the Melanoma.  This should slowdown the spread and if you follow up with Yervoy again and systematically added IL-2 at day 50, you may get the response you are looking for.

                                                  All the best

                                                   

                                                  Jimmy B

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