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What to do next

› Forums › General Melanoma Community › What to do next

  • Post
    • June 9, 2014 at 2:26 pm
    braunerk
    Participant

      So I had the testing and I am neg for BRAF NRAS and CKIt. I am starting ippi on Friday and hoping for an EAP for PD-1 to open soon. I am in Tucson AZ so does anyone know of an opening for PD-1 on the west coast I will travel if I can get into a trial. IL-2 is not really an option due to my asthma I am stage 4 so I am open to all suggestions. 

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    • Replies
        • June 9, 2014 at 2:50 pm
        cbs805
        Participant

          The Mayo Clinic including the Scottsdale location have expanded access PD1. To  qualify for the expanded access program you do have to complete ipi first. My husband has been on the expanded access program at Beverly Hills Cancer Center since April. It was the first location to have it available and is where he has been treated all along by Dr. O'Day.  He will have his first scans since the PD 1 in July.  He has no tumors that can be felt so we don't  know what is happening, but he feels great.  Much better than he has since being diagnosed April, 2013.  He has mucosal melanoma of the sinus.  Been through 3 surgeries, chemo, radiation. Cyber knife, 2 rounds of ipi, etc.  Dr. O'Day is very optimistic that good things are happening now.

            • June 9, 2014 at 3:49 pm
            Ninniditti
            Participant

              Hi! I also have mucosal melanoma of the sinus. I hade Ipi, but my livervalues got bad after the firs dose so I had to stop ipi. Now I want to have PD1( EAP Merk) but my onc doesn't want to give me another immuntherapi  cause I had severe sideffects of ipi. I am curious how your husbands scans work out, really hoping it's really good!

              • June 9, 2014 at 9:15 pm
              arthurjedi007
              Participant

                You might want to get a second opinion. Your doc is right that the sideffects of ipi can be severe even at the FDA approved dosage. However at the dosage of the EAP Merck the data has way less sideffects. I get my 2nd dose wednesday and the dosage is 2mg per kg of body weight every 3 weeks. If we look at Merck's data at that dosage if I read it right they had zero grade 3 or higher side affects.   http://www.nejm.org/doi/suppl/10.1056/NEJMoa1305133/suppl_file/nejmoa1305133_appendix.pdf    and   http://www.nejm.org/doi/full/10.1056/NEJMoa1305133#t=articleResults

                • June 9, 2014 at 9:15 pm
                arthurjedi007
                Participant

                  You might want to get a second opinion. Your doc is right that the sideffects of ipi can be severe even at the FDA approved dosage. However at the dosage of the EAP Merck the data has way less sideffects. I get my 2nd dose wednesday and the dosage is 2mg per kg of body weight every 3 weeks. If we look at Merck's data at that dosage if I read it right they had zero grade 3 or higher side affects.   http://www.nejm.org/doi/suppl/10.1056/NEJMoa1305133/suppl_file/nejmoa1305133_appendix.pdf    and   http://www.nejm.org/doi/full/10.1056/NEJMoa1305133#t=articleResults

                  • June 9, 2014 at 9:15 pm
                  arthurjedi007
                  Participant

                    You might want to get a second opinion. Your doc is right that the sideffects of ipi can be severe even at the FDA approved dosage. However at the dosage of the EAP Merck the data has way less sideffects. I get my 2nd dose wednesday and the dosage is 2mg per kg of body weight every 3 weeks. If we look at Merck's data at that dosage if I read it right they had zero grade 3 or higher side affects.   http://www.nejm.org/doi/suppl/10.1056/NEJMoa1305133/suppl_file/nejmoa1305133_appendix.pdf    and   http://www.nejm.org/doi/full/10.1056/NEJMoa1305133#t=articleResults

                    • June 9, 2014 at 3:49 pm
                    Ninniditti
                    Participant

                      Hi! I also have mucosal melanoma of the sinus. I hade Ipi, but my livervalues got bad after the firs dose so I had to stop ipi. Now I want to have PD1( EAP Merk) but my onc doesn't want to give me another immuntherapi  cause I had severe sideffects of ipi. I am curious how your husbands scans work out, really hoping it's really good!

                      • June 9, 2014 at 3:49 pm
                      Ninniditti
                      Participant

                        Hi! I also have mucosal melanoma of the sinus. I hade Ipi, but my livervalues got bad after the firs dose so I had to stop ipi. Now I want to have PD1( EAP Merk) but my onc doesn't want to give me another immuntherapi  cause I had severe sideffects of ipi. I am curious how your husbands scans work out, really hoping it's really good!

                      • June 9, 2014 at 2:50 pm
                      cbs805
                      Participant

                        The Mayo Clinic including the Scottsdale location have expanded access PD1. To  qualify for the expanded access program you do have to complete ipi first. My husband has been on the expanded access program at Beverly Hills Cancer Center since April. It was the first location to have it available and is where he has been treated all along by Dr. O'Day.  He will have his first scans since the PD 1 in July.  He has no tumors that can be felt so we don't  know what is happening, but he feels great.  Much better than he has since being diagnosed April, 2013.  He has mucosal melanoma of the sinus.  Been through 3 surgeries, chemo, radiation. Cyber knife, 2 rounds of ipi, etc.  Dr. O'Day is very optimistic that good things are happening now.

                        • June 9, 2014 at 2:50 pm
                        cbs805
                        Participant

                          The Mayo Clinic including the Scottsdale location have expanded access PD1. To  qualify for the expanded access program you do have to complete ipi first. My husband has been on the expanded access program at Beverly Hills Cancer Center since April. It was the first location to have it available and is where he has been treated all along by Dr. O'Day.  He will have his first scans since the PD 1 in July.  He has no tumors that can be felt so we don't  know what is happening, but he feels great.  Much better than he has since being diagnosed April, 2013.  He has mucosal melanoma of the sinus.  Been through 3 surgeries, chemo, radiation. Cyber knife, 2 rounds of ipi, etc.  Dr. O'Day is very optimistic that good things are happening now.

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