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ltedge46

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      ltedge46
      Participant

        Hope for the best, clearly a complicated case. I was diagnosed in Jan 2012 stage 4 and did TIL therapy at NIH followed by Yervoy, Zelboraf and now am on PD-1.  I think TIL contained the spread, I saw a small response to Yervoy, but with Zelboraf I saw nearly 100% shrinkage before it started to grow again (normal with Zel).  I've been stable on the PD-1 for the past 10 months.  The positive thing is, you have a lot of options now, even when I was living from the bed to the bathroom to the couch and back, I was just happy to be alive and tried to make the most out of every moment with my wife and kids.

         

        There is a good melanoma caregivers support group on facebook that my wife is a member of.  Lots of great positive spouses and friends to talk with.  Good luck.

        ltedge46
        Participant

          Hope for the best, clearly a complicated case. I was diagnosed in Jan 2012 stage 4 and did TIL therapy at NIH followed by Yervoy, Zelboraf and now am on PD-1.  I think TIL contained the spread, I saw a small response to Yervoy, but with Zelboraf I saw nearly 100% shrinkage before it started to grow again (normal with Zel).  I've been stable on the PD-1 for the past 10 months.  The positive thing is, you have a lot of options now, even when I was living from the bed to the bathroom to the couch and back, I was just happy to be alive and tried to make the most out of every moment with my wife and kids.

           

          There is a good melanoma caregivers support group on facebook that my wife is a member of.  Lots of great positive spouses and friends to talk with.  Good luck.

          ltedge46
          Participant

            Hope for the best, clearly a complicated case. I was diagnosed in Jan 2012 stage 4 and did TIL therapy at NIH followed by Yervoy, Zelboraf and now am on PD-1.  I think TIL contained the spread, I saw a small response to Yervoy, but with Zelboraf I saw nearly 100% shrinkage before it started to grow again (normal with Zel).  I've been stable on the PD-1 for the past 10 months.  The positive thing is, you have a lot of options now, even when I was living from the bed to the bathroom to the couch and back, I was just happy to be alive and tried to make the most out of every moment with my wife and kids.

             

            There is a good melanoma caregivers support group on facebook that my wife is a member of.  Lots of great positive spouses and friends to talk with.  Good luck.

            ltedge46
            Participant

              ray39, I know how you feel. It may not help you relax but try not to worry until the results come back.  There's nothing you can do in the meantime but spend some extra time with your family.  I had a stage 3 removed in 2006 and felt the same way while waiting.  In 2012 it returned as a stage 4 but I'm still around to continue fighting.

               

              I hope everything turns out benign, stay strong.

              ltedge46
              Participant

                ray39, I know how you feel. It may not help you relax but try not to worry until the results come back.  There's nothing you can do in the meantime but spend some extra time with your family.  I had a stage 3 removed in 2006 and felt the same way while waiting.  In 2012 it returned as a stage 4 but I'm still around to continue fighting.

                 

                I hope everything turns out benign, stay strong.

                ltedge46
                Participant

                  ray39, I know how you feel. It may not help you relax but try not to worry until the results come back.  There's nothing you can do in the meantime but spend some extra time with your family.  I had a stage 3 removed in 2006 and felt the same way while waiting.  In 2012 it returned as a stage 4 but I'm still around to continue fighting.

                   

                  I hope everything turns out benign, stay strong.

                  ltedge46
                  Participant

                    Also, it's been approved for expanded compassionate use which means any clinc/hospital currently utilizing PD-1 in trial can give it to other patients not on trials.

                    ltedge46
                    Participant

                      Also, it's been approved for expanded compassionate use which means any clinc/hospital currently utilizing PD-1 in trial can give it to other patients not on trials.

                      ltedge46
                      Participant

                        Also, it's been approved for expanded compassionate use which means any clinc/hospital currently utilizing PD-1 in trial can give it to other patients not on trials.

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