The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

G-Samsa

Forum Replies Created

Viewing 5 reply threads
  • Replies
      G-Samsa
      Participant

        I recently completed the Til treatment .  It was highly recommended to me when scans indicated progression after three years of stability with Ipi/Nivo.  I tried Traf/Mek first but it proved difficult to bear.   The Til treatment went well– a couple of tough weeks but then it's over.  The jury is still out on its effectiveness– but after a month there has been no more progression — and even some shrinkage in tumor size– so I'm hopeful.

        My doctor told me that the hardest part of Til is getting into the trial..  It seems there are numerous points along the procedure timeline where you can be disqualified from continuing—even close infusion day.  So we had a couple of scares.  It's a lengthy process, and you need to wash out of the current treatment before they harvest a tumor…..so by the time you're actually infused it could be more than three months–which is really creepy when your progressing– Though in my case the progression helped a bit by producing a nice big tumor in a very accessible location…… You gotta look on the bright side.

        G-Samsa
        Participant

          I recently completed the Til treatment .  It was highly recommended to me when scans indicated progression after three years of stability with Ipi/Nivo.  I tried Traf/Mek first but it proved difficult to bear.   The Til treatment went well– a couple of tough weeks but then it's over.  The jury is still out on its effectiveness– but after a month there has been no more progression — and even some shrinkage in tumor size– so I'm hopeful.

          My doctor told me that the hardest part of Til is getting into the trial..  It seems there are numerous points along the procedure timeline where you can be disqualified from continuing—even close infusion day.  So we had a couple of scares.  It's a lengthy process, and you need to wash out of the current treatment before they harvest a tumor…..so by the time you're actually infused it could be more than three months–which is really creepy when your progressing– Though in my case the progression helped a bit by producing a nice big tumor in a very accessible location…… You gotta look on the bright side.

          G-Samsa
          Participant

            I recently completed the Til treatment .  It was highly recommended to me when scans indicated progression after three years of stability with Ipi/Nivo.  I tried Traf/Mek first but it proved difficult to bear.   The Til treatment went well– a couple of tough weeks but then it's over.  The jury is still out on its effectiveness– but after a month there has been no more progression — and even some shrinkage in tumor size– so I'm hopeful.

            My doctor told me that the hardest part of Til is getting into the trial..  It seems there are numerous points along the procedure timeline where you can be disqualified from continuing—even close infusion day.  So we had a couple of scares.  It's a lengthy process, and you need to wash out of the current treatment before they harvest a tumor…..so by the time you're actually infused it could be more than three months–which is really creepy when your progressing– Though in my case the progression helped a bit by producing a nice big tumor in a very accessible location…… You gotta look on the bright side.

            G-Samsa
            Participant

              In the current  round of Til trials at NIH is one specifically for those who have failed the PD-1. ( I believe it's opens to 64 people– not sure where they are today)  There are many hurdles—from the initial blood sample (sent fedex), through to the actual cell infusion—any of which can disqualify you.  There is also a washout period– which is scary in itself.  It's a good option regardless if your mel cooperates, and might be worth starting the ball rolling–at least until you've had your consultation and get a sense of how good a candidate they feel you are.

              G-Samsa
              Participant

                In the current  round of Til trials at NIH is one specifically for those who have failed the PD-1. ( I believe it's opens to 64 people– not sure where they are today)  There are many hurdles—from the initial blood sample (sent fedex), through to the actual cell infusion—any of which can disqualify you.  There is also a washout period– which is scary in itself.  It's a good option regardless if your mel cooperates, and might be worth starting the ball rolling–at least until you've had your consultation and get a sense of how good a candidate they feel you are.

                G-Samsa
                Participant

                  In the current  round of Til trials at NIH is one specifically for those who have failed the PD-1. ( I believe it's opens to 64 people– not sure where they are today)  There are many hurdles—from the initial blood sample (sent fedex), through to the actual cell infusion—any of which can disqualify you.  There is also a washout period– which is scary in itself.  It's a good option regardless if your mel cooperates, and might be worth starting the ball rolling–at least until you've had your consultation and get a sense of how good a candidate they feel you are.

                  G-Samsa
                  Participant

                    Hi — I have a lot of joint inflammation from these drugs, and as a result they have scheduled doses every other day.  I have moderate fever on the days I take the drug also.  The doctors suspect that the combined effect of the immunotherapy still circulating in me plus the combo is the cause and have suggested one 200mg ibuprofen  an hour before each dose — though I think every doctor has a remedy…

                    i have found the Ipi-Anti PD-1 combo much easier than this…..

                    G-Samsa
                    Participant

                      Hi — I have a lot of joint inflammation from these drugs, and as a result they have scheduled doses every other day.  I have moderate fever on the days I take the drug also.  The doctors suspect that the combined effect of the immunotherapy still circulating in me plus the combo is the cause and have suggested one 200mg ibuprofen  an hour before each dose — though I think every doctor has a remedy…

                      i have found the Ipi-Anti PD-1 combo much easier than this…..

                      G-Samsa
                      Participant

                        Hi — I have a lot of joint inflammation from these drugs, and as a result they have scheduled doses every other day.  I have moderate fever on the days I take the drug also.  The doctors suspect that the combined effect of the immunotherapy still circulating in me plus the combo is the cause and have suggested one 200mg ibuprofen  an hour before each dose — though I think every doctor has a remedy…

                        i have found the Ipi-Anti PD-1 combo much easier than this…..

                        G-Samsa
                        Participant

                          Thanks Ed –I suspect you're right about ASCO setting the pace…The trials you mentioned seem like they were at Such an early stage.   Was wondering if any of the promising compounds we'd heard so much about over the past couple of years like PDL-1, IDO and some others might come to market in the nearer term–adding to our arsenal.

                          G-Samsa
                          Participant

                            Thanks Ed –I suspect you're right about ASCO setting the pace…The trials you mentioned seem like they were at Such an early stage.   Was wondering if any of the promising compounds we'd heard so much about over the past couple of years like PDL-1, IDO and some others might come to market in the nearer term–adding to our arsenal.

                            G-Samsa
                            Participant

                              Thanks Ed –I suspect you're right about ASCO setting the pace…The trials you mentioned seem like they were at Such an early stage.   Was wondering if any of the promising compounds we'd heard so much about over the past couple of years like PDL-1, IDO and some others might come to market in the nearer term–adding to our arsenal.

                              G-Samsa
                              Participant

                                Not that it know much about pharmacy-and this may be a small detail– but Tylenol on top of the combination drug Percocet is a lot of Tylenol.  My doctors have specifically prescribed Oxycodone (straight-up) to avoid excess Tylenol because of  potential liver toxicity.  I'd just be sure the right hand knows what the left is up to.

                                G-Samsa
                                Participant

                                  Not that it know much about pharmacy-and this may be a small detail– but Tylenol on top of the combination drug Percocet is a lot of Tylenol.  My doctors have specifically prescribed Oxycodone (straight-up) to avoid excess Tylenol because of  potential liver toxicity.  I'd just be sure the right hand knows what the left is up to.

                                  G-Samsa
                                  Participant

                                    Not that it know much about pharmacy-and this may be a small detail– but Tylenol on top of the combination drug Percocet is a lot of Tylenol.  My doctors have specifically prescribed Oxycodone (straight-up) to avoid excess Tylenol because of  potential liver toxicity.  I'd just be sure the right hand knows what the left is up to.

                                Viewing 5 reply threads