DPCP

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  • Post
    • September 27, 2012 at 7:36 pm
    NYKaren
    Participant

      Hi everyone.

       

       I just came from Dr. Wolchok's office, where I was expecting to be put on a stronger regimin of chemo.

      Several months ago, I had mentioned DPCP to him, which someone here on the board had suggested to me.  (Frank, Jimmy??)

      Hi everyone.

       

       I just came from Dr. Wolchok's office, where I was expecting to be put on a stronger regimin of chemo.

      Several months ago, I had mentioned DPCP to him, which someone here on the board had suggested to me.  (Frank, Jimmy??)

      He and my onc. derm, Dr. Halpern, have been frustrated because they couldn't find anyone here to compound it.  Turns out, it's been on his mind all these months, and he had just (as in earlier today) met a reseacher from Rockafeller University (research university, Dr. Leves, who uses this compound.   I just spoke with him, and he told me that "I'm just what they're looking for!"  Imagine that!  So I'm waiting for the nurse coordinator to call me to set up a screening. 

      I'm beyond shocked that this has been on Dr. W's mind for all these months…that's just the kind of guy he is.

      Could it be that maybe, just maybe, this would work?  Stay tuned.

      karen

    Viewing 8 reply threads
    • Replies
        • September 27, 2012 at 8:43 pm
        SoCalDave
        Participant

          Hi Karen – that was me! I've been using it for a little over a year and 1/2 now. For me it seemed to take a while to kick in but haven't had any new mels in quite awhile. I had an 8 month stretch where i had no new ones, then 2 small mels back in July. None since then. See my Dr again next month along with scans.

          I could only find 2 pharms that would compound it for me. Both wanted $200 for about a 6 month supply. I actuall contacted the hospital in Australia who is doing a clinical trial; they put me in contact with their pharmacy and sent me a 1 year supply for $25. With shipping I think it was close to $40.

          Let me know if you want that info. I must admit, it's not fun putting that stuff – especially the first time, you'll most likely get some welts. Think of a real bad case of poison ivy or oak. You'll learn to get a feel as to when you should wash it off. I put it on for maybe 2 or 3 hours and that seems to do the trick. My doc says we want the area "angry" (red and itchy) but not to the point of welts.

          Good luck with it and let me know if you need any more info. I know my doc was trying to get funding for a clinical trial here but nothing yet.

          Dave

          • September 27, 2012 at 8:43 pm
          SoCalDave
          Participant

            Hi Karen – that was me! I've been using it for a little over a year and 1/2 now. For me it seemed to take a while to kick in but haven't had any new mels in quite awhile. I had an 8 month stretch where i had no new ones, then 2 small mels back in July. None since then. See my Dr again next month along with scans.

            I could only find 2 pharms that would compound it for me. Both wanted $200 for about a 6 month supply. I actuall contacted the hospital in Australia who is doing a clinical trial; they put me in contact with their pharmacy and sent me a 1 year supply for $25. With shipping I think it was close to $40.

            Let me know if you want that info. I must admit, it's not fun putting that stuff – especially the first time, you'll most likely get some welts. Think of a real bad case of poison ivy or oak. You'll learn to get a feel as to when you should wash it off. I put it on for maybe 2 or 3 hours and that seems to do the trick. My doc says we want the area "angry" (red and itchy) but not to the point of welts.

            Good luck with it and let me know if you need any more info. I know my doc was trying to get funding for a clinical trial here but nothing yet.

            Dave

            • September 27, 2012 at 8:43 pm
            SoCalDave
            Participant

              Hi Karen – that was me! I've been using it for a little over a year and 1/2 now. For me it seemed to take a while to kick in but haven't had any new mels in quite awhile. I had an 8 month stretch where i had no new ones, then 2 small mels back in July. None since then. See my Dr again next month along with scans.

              I could only find 2 pharms that would compound it for me. Both wanted $200 for about a 6 month supply. I actuall contacted the hospital in Australia who is doing a clinical trial; they put me in contact with their pharmacy and sent me a 1 year supply for $25. With shipping I think it was close to $40.

              Let me know if you want that info. I must admit, it's not fun putting that stuff – especially the first time, you'll most likely get some welts. Think of a real bad case of poison ivy or oak. You'll learn to get a feel as to when you should wash it off. I put it on for maybe 2 or 3 hours and that seems to do the trick. My doc says we want the area "angry" (red and itchy) but not to the point of welts.

              Good luck with it and let me know if you need any more info. I know my doc was trying to get funding for a clinical trial here but nothing yet.

              Dave

              • September 28, 2012 at 2:07 pm
              aldakota22
              Participant

                Karen I am happy to share in your good news.Will be praying that you get in this trial and that it works beyond your expectations.Definitely need more docs like you have .Beat the Beast.  Al

                  • September 28, 2012 at 4:14 pm
                  NYKaren
                  Participant

                    Thanks, Al. You're absolutely right.  I'm so happy/lucky with my docs.  Fingers are definately crossed!

                    Dave, you are correct…my info was incorrect. 

                    If i don't get into this trial, we'll cross that bridge when we come to it.

                    Have a great weekend,

                    Karen

                    • September 28, 2012 at 4:14 pm
                    NYKaren
                    Participant

                      Thanks, Al. You're absolutely right.  I'm so happy/lucky with my docs.  Fingers are definately crossed!

                      Dave, you are correct…my info was incorrect. 

                      If i don't get into this trial, we'll cross that bridge when we come to it.

                      Have a great weekend,

                      Karen

                      • September 28, 2012 at 4:14 pm
                      NYKaren
                      Participant

                        Thanks, Al. You're absolutely right.  I'm so happy/lucky with my docs.  Fingers are definately crossed!

                        Dave, you are correct…my info was incorrect. 

                        If i don't get into this trial, we'll cross that bridge when we come to it.

                        Have a great weekend,

                        Karen

                      • September 28, 2012 at 2:07 pm
                      aldakota22
                      Participant

                        Karen I am happy to share in your good news.Will be praying that you get in this trial and that it works beyond your expectations.Definitely need more docs like you have .Beat the Beast.  Al

                        • September 28, 2012 at 2:07 pm
                        aldakota22
                        Participant

                          Karen I am happy to share in your good news.Will be praying that you get in this trial and that it works beyond your expectations.Definitely need more docs like you have .Beat the Beast.  Al

                          • October 1, 2012 at 10:18 am
                          triciad
                          Participant

                            Good luck Karen…you're always in my prayers!

                              • October 4, 2012 at 1:25 am
                              NYKaren
                              Participant
                                Thanks Tricia,

                                I’ve been reading some interesting stuff about this treatment. Still awaiting an appt from Rockefeller.
                                Karen

                                • October 4, 2012 at 1:25 am
                                NYKaren
                                Participant
                                  Thanks Tricia,

                                  I’ve been reading some interesting stuff about this treatment. Still awaiting an appt from Rockefeller.
                                  Karen

                                  • October 4, 2012 at 1:25 am
                                  NYKaren
                                  Participant
                                    Thanks Tricia,

                                    I’ve been reading some interesting stuff about this treatment. Still awaiting an appt from Rockefeller.
                                    Karen

                                  • October 1, 2012 at 10:18 am
                                  triciad
                                  Participant

                                    Good luck Karen…you're always in my prayers!

                                    • October 1, 2012 at 10:18 am
                                    triciad
                                    Participant

                                      Good luck Karen…you're always in my prayers!

                                  Viewing 8 reply threads
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