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ANTI-PD1 Results? Anyone??
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ANTI-PD1 Results? Anyone??

› Forums › General Melanoma Community › ANTI-PD1 Results? Anyone??

  • Post
    • January 24, 2012 at 3:22 am
    rbruce
    Participant

      I have been on a clinical trial (PI3k inhibitor) at UCSF for 3 months now and my last scan showed no new tumors and no growth, but no reduction.  The side effects come and go which include large itchy rashes and bumps as well as diarreah.  Sometimes the itching becomes unbearable so they back off on the doseage for a few days.  I take the med orally, 2 pills in am and 2 at pm so it's been pretty easy.  Compared to the biochomo I went through, this is a cakewalk.  I chose this particular trial because of my NRAS Q61 mutation and am told that inhibiting the PI3K s

      I have been on a clinical trial (PI3k inhibitor) at UCSF for 3 months now and my last scan showed no new tumors and no growth, but no reduction.  The side effects come and go which include large itchy rashes and bumps as well as diarreah.  Sometimes the itching becomes unbearable so they back off on the doseage for a few days.  I take the med orally, 2 pills in am and 2 at pm so it's been pretty easy.  Compared to the biochomo I went through, this is a cakewalk.  I chose this particular trial because of my NRAS Q61 mutation and am told that inhibiting the PI3K shows promise and that there wasn't an open spot for a PD-1 trial anywhere on the west coast.  UCSF is trying to get a PD-1 trial open soon and I want to be prepared to make a decision.  After reading and hearing about PD-1 for the last year, I haven't seen much new info lately.  All of the new PD-1 trials that are opening seem to be single agent, ie. PD-1 only, while some of the older trials that seemed to show a lot of promise included a vaccine component.  With that said, can anyone share their experiences with any of the single agent PD-1 trials that have opened recently?  Side effects, s\results, etc?  I know it's early, so any information you can share would benefit a lot of people waiting for a PD-1 trial to open near them. 

      Thank you!

      Robert

      p.s. I went back to work on December 19th when after my biochemo I didn't know if I was going to make it ….period!  I'm feeling good, a little pain from my rib mets and a bit of fatigue, but all in all, I'm doing well. 

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    • Replies
        • January 24, 2012 at 8:47 am
        LynnLuc
        Participant

          I have stage 4 melanoma and currently NED. I had surgery on March 26 2010 and they removed 3 lymph nodes etc. Only one had melanoma and it was 6.8 cent. at it's widest area. It was by my heart. Mayo removed it and the NIH said it would return in a few months. So I decided to find a trial using MDX 1106 and peptides with the hope it won't return. I did two 12 week cycles receiving IV of MDX 1106 ( anti pd 1) and 6 injections of peptides in one or the other thigh. I am now in the booster phase of the trial receiving MDX 1106 every 3 months ( IV drip). I will continue to do this booster for at least 2 years.I also get scanned every 3 months to insure I am NED. March 26 is coming up and it will be my two year birthday of NED. Not bad considering the Mayo Clinic,the NIH and  Med center One oncology gave me 6-9 months in June 2009.

          I have a friend who is in the sister trial ( mine required me to be surgicially resected and NED at the time of enrollment) and her's is for those not NED. She has just begun her booster phase and she continues to have no new mets, no growth and her's continues to shrink. She has two subborn ones in the lining surrounding her stomach but they remain stable…haven't shrunk and haven't grown.

          We go to Moffitt.

          I have Dr Weber.

          How is your thyroid function? I had mega itching and it was because my normal thyroid was basically fried by the treatment. It's ok as along as I remain NED…not a bad trade off. I take synthroid now.

            • January 24, 2012 at 8:52 am
            LynnLuc
            Participant

              PS during the trial I went every other week .

              • January 24, 2012 at 8:52 am
              LynnLuc
              Participant

                PS during the trial I went every other week .

                • January 24, 2012 at 8:52 am
                LynnLuc
                Participant

                  PS during the trial I went every other week .

                • January 24, 2012 at 8:47 am
                LynnLuc
                Participant

                  I have stage 4 melanoma and currently NED. I had surgery on March 26 2010 and they removed 3 lymph nodes etc. Only one had melanoma and it was 6.8 cent. at it's widest area. It was by my heart. Mayo removed it and the NIH said it would return in a few months. So I decided to find a trial using MDX 1106 and peptides with the hope it won't return. I did two 12 week cycles receiving IV of MDX 1106 ( anti pd 1) and 6 injections of peptides in one or the other thigh. I am now in the booster phase of the trial receiving MDX 1106 every 3 months ( IV drip). I will continue to do this booster for at least 2 years.I also get scanned every 3 months to insure I am NED. March 26 is coming up and it will be my two year birthday of NED. Not bad considering the Mayo Clinic,the NIH and  Med center One oncology gave me 6-9 months in June 2009.

                  I have a friend who is in the sister trial ( mine required me to be surgicially resected and NED at the time of enrollment) and her's is for those not NED. She has just begun her booster phase and she continues to have no new mets, no growth and her's continues to shrink. She has two subborn ones in the lining surrounding her stomach but they remain stable…haven't shrunk and haven't grown.

                  We go to Moffitt.

                  I have Dr Weber.

                  How is your thyroid function? I had mega itching and it was because my normal thyroid was basically fried by the treatment. It's ok as along as I remain NED…not a bad trade off. I take synthroid now.

                  • January 24, 2012 at 8:47 am
                  LynnLuc
                  Participant

                    I have stage 4 melanoma and currently NED. I had surgery on March 26 2010 and they removed 3 lymph nodes etc. Only one had melanoma and it was 6.8 cent. at it's widest area. It was by my heart. Mayo removed it and the NIH said it would return in a few months. So I decided to find a trial using MDX 1106 and peptides with the hope it won't return. I did two 12 week cycles receiving IV of MDX 1106 ( anti pd 1) and 6 injections of peptides in one or the other thigh. I am now in the booster phase of the trial receiving MDX 1106 every 3 months ( IV drip). I will continue to do this booster for at least 2 years.I also get scanned every 3 months to insure I am NED. March 26 is coming up and it will be my two year birthday of NED. Not bad considering the Mayo Clinic,the NIH and  Med center One oncology gave me 6-9 months in June 2009.

                    I have a friend who is in the sister trial ( mine required me to be surgicially resected and NED at the time of enrollment) and her's is for those not NED. She has just begun her booster phase and she continues to have no new mets, no growth and her's continues to shrink. She has two subborn ones in the lining surrounding her stomach but they remain stable…haven't shrunk and haven't grown.

                    We go to Moffitt.

                    I have Dr Weber.

                    How is your thyroid function? I had mega itching and it was because my normal thyroid was basically fried by the treatment. It's ok as along as I remain NED…not a bad trade off. I take synthroid now.

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