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Update..its been a while!

Forums Cutaneous Melanoma Community Update..its been a while!

  • Post
    Vermont_Donna
    Participant

      Hello everyone,

        Its been a while and I thought I would update MPIP on how I am doing. I am an 8 year stage 3a (melanoma on lower calf, superficial spreading type) melanoma survivor. I am B-RAF negative. I am currently NED for 3 years 7 months after completing a clinical trial of ipilimumab (3mg/kg). I will have another PET scan this month, just saw my oncologist and did labs (exam and labs all normal) but he wants me to have PET scans every 6 months until I am 5 years NED. I'm ok with that!

        I have done the following treatments: 11 months of low dose interferon injection (I was unable to tolerate the high dose after having two of them), 7 months of leukine injections, 5.5 weeks of radiation to my lower right leg, an isolated limb PERFUSION at Mass General, 6 weeks of radiation, and then finally a clinical trial of Ipi. yes my melanoma came back after every treatment except for ipi. I do not feel that any of my treatments were a "waste of time", I feel that every treeatment "bought" me more time until the ipi worked, and who knows what cumulative effect there may be?

       I have moderate right leg lymphadema and wear a JOBST custom compression garment during waking hours, a Solaris night time compression garment, and I also have a Flexi-touch lymphadema pump that I do most nights (takes an hour). As I have below the knee edema also on my left leg due to cardiac meds that I take (I also had a heart attack two years ago, unlreated to cancer), I wear a double legged pantyhose style compression garment. Hotter than heck in the summer and not the best fashion statement, BUT it is a real conversation starter when I wear shorts or capris! I just naturally do on the spot education about skin cancer. I have alot of posto

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        Vermont_Donna
        Participant

          I have alot of post radiation skin changes to my leg and also moderate neuropathy to my foot for which I take gabapentin for.

          I am happy to be alive and doing well overall.

          Vermont_Donna

          Vermont_Donna
          Participant

            I have alot of post radiation skin changes to my leg and also moderate neuropathy to my foot for which I take gabapentin for.

            I am happy to be alive and doing well overall.

            Vermont_Donna

            Vermont_Donna
            Participant

              I have alot of post radiation skin changes to my leg and also moderate neuropathy to my foot for which I take gabapentin for.

              I am happy to be alive and doing well overall.

              Vermont_Donna

              BrianP
              Participant

                Thanks for the update Donna.  Sounds like you have been through the wringer but have come out the other side with a great attitude and even better NED!  Good luck with the upcoming scans.

                Brian

                BrianP
                Participant

                  Thanks for the update Donna.  Sounds like you have been through the wringer but have come out the other side with a great attitude and even better NED!  Good luck with the upcoming scans.

                  Brian

                  BrianP
                  Participant

                    Thanks for the update Donna.  Sounds like you have been through the wringer but have come out the other side with a great attitude and even better NED!  Good luck with the upcoming scans.

                    Brian

                    kylez
                    Participant

                      That's great  Donna. I'm viewing each of my treatments  kind of the same way — buying some time get to the next. Also, people can discount Ipi in favor of, say PD1, sometimes including me. But the buzz when Ipi came out wasn't for no reason, right? Wishing you more of the same on your next scan.

                      kylez
                      Participant

                        That's great  Donna. I'm viewing each of my treatments  kind of the same way — buying some time get to the next. Also, people can discount Ipi in favor of, say PD1, sometimes including me. But the buzz when Ipi came out wasn't for no reason, right? Wishing you more of the same on your next scan.

                        kylez
                        Participant

                          That's great  Donna. I'm viewing each of my treatments  kind of the same way — buying some time get to the next. Also, people can discount Ipi in favor of, say PD1, sometimes including me. But the buzz when Ipi came out wasn't for no reason, right? Wishing you more of the same on your next scan.

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