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millrog

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      millrog
      Participant

        My husband just completed the protocol with ACT and IL2 at Moffit in Tampa. He was the 12th to go through. 10 are still alive. He has seen disappearance of tumors we could see and due for a scan in three weeks to see how it worked with internal tumors. He chose this treatment as it gave him a chance for two years as opposed to maybe 6 months with the other options. (ipi or Braf or chemo). when this  treatment protocol began he was told less than 60 days with no treatment. The side effects were bad for the week of the IL2 but he is almost back to normal and the baseball size tumor on his arm is gone so wondering why you so strongly against

        millrog
        Participant

          My husband just completed the protocol with ACT and IL2 at Moffit in Tampa. He was the 12th to go through. 10 are still alive. He has seen disappearance of tumors we could see and due for a scan in three weeks to see how it worked with internal tumors. He chose this treatment as it gave him a chance for two years as opposed to maybe 6 months with the other options. (ipi or Braf or chemo). when this  treatment protocol began he was told less than 60 days with no treatment. The side effects were bad for the week of the IL2 but he is almost back to normal and the baseball size tumor on his arm is gone so wondering why you so strongly against

          millrog
          Participant

            My husband just completed the protocol with ACT and IL2 at Moffit in Tampa. He was the 12th to go through. 10 are still alive. He has seen disappearance of tumors we could see and due for a scan in three weeks to see how it worked with internal tumors. He chose this treatment as it gave him a chance for two years as opposed to maybe 6 months with the other options. (ipi or Braf or chemo). when this  treatment protocol began he was told less than 60 days with no treatment. The side effects were bad for the week of the IL2 but he is almost back to normal and the baseball size tumor on his arm is gone so wondering why you so strongly against

            millrog
            Participant

              If your Til cells don't grow in the lab and they don't have any saved Til from a compatible donor, then you would be out of the protocol and would not undergo the immune system depletion. Mike signed a form that would allow Moffitt to use his cells for study and  if another patient closely matched and did not grow enough of their own, but I am sure it works better if it is your own cells that they use . The wait time for the cells to grow is about 5 weeks and we were on pins and needles waiting to learn if his grew. They did and he underwent the chemo to kill his immune system to make room for the Til. They also have some of Mike's til cells stored for him for possible future treatment if needed but Mike was the next to last patient at Moffitt following the NIH protocol because of the IL2 side effects.

              millrog
              Participant

                If your Til cells don't grow in the lab and they don't have any saved Til from a compatible donor, then you would be out of the protocol and would not undergo the immune system depletion. Mike signed a form that would allow Moffitt to use his cells for study and  if another patient closely matched and did not grow enough of their own, but I am sure it works better if it is your own cells that they use . The wait time for the cells to grow is about 5 weeks and we were on pins and needles waiting to learn if his grew. They did and he underwent the chemo to kill his immune system to make room for the Til. They also have some of Mike's til cells stored for him for possible future treatment if needed but Mike was the next to last patient at Moffitt following the NIH protocol because of the IL2 side effects.

                millrog
                Participant

                  If your Til cells don't grow in the lab and they don't have any saved Til from a compatible donor, then you would be out of the protocol and would not undergo the immune system depletion. Mike signed a form that would allow Moffitt to use his cells for study and  if another patient closely matched and did not grow enough of their own, but I am sure it works better if it is your own cells that they use . The wait time for the cells to grow is about 5 weeks and we were on pins and needles waiting to learn if his grew. They did and he underwent the chemo to kill his immune system to make room for the Til. They also have some of Mike's til cells stored for him for possible future treatment if needed but Mike was the next to last patient at Moffitt following the NIH protocol because of the IL2 side effects.

                  millrog
                  Participant

                    jag, I understand what you mean better now. My husband Mike passed all the pre tests and had 4 days of chemo to kill his immune system. 5th day he was so sick and his liver function number was sky high. They decided to let him skip the chemo for one day and see where the liver number was. He would have been out of the protocol if the number didn't improve so no immune system and no real help for melanoma and two months of testing, til growth, etc "wasted". We had a real sinking feeling. Luckily his number improved and we continued and definitely have a strong partial response and praying for the same  for the internal mets. Moffitt doctors were great. I can't say enough good about them. They are looking to start a new protocol there with Til and one of the Braf drugs since they think it will be less side effects than il2.

                    millrog
                    Participant

                      jag, I understand what you mean better now. My husband Mike passed all the pre tests and had 4 days of chemo to kill his immune system. 5th day he was so sick and his liver function number was sky high. They decided to let him skip the chemo for one day and see where the liver number was. He would have been out of the protocol if the number didn't improve so no immune system and no real help for melanoma and two months of testing, til growth, etc "wasted". We had a real sinking feeling. Luckily his number improved and we continued and definitely have a strong partial response and praying for the same  for the internal mets. Moffitt doctors were great. I can't say enough good about them. They are looking to start a new protocol there with Til and one of the Braf drugs since they think it will be less side effects than il2.

                      millrog
                      Participant

                        jag, I understand what you mean better now. My husband Mike passed all the pre tests and had 4 days of chemo to kill his immune system. 5th day he was so sick and his liver function number was sky high. They decided to let him skip the chemo for one day and see where the liver number was. He would have been out of the protocol if the number didn't improve so no immune system and no real help for melanoma and two months of testing, til growth, etc "wasted". We had a real sinking feeling. Luckily his number improved and we continued and definitely have a strong partial response and praying for the same  for the internal mets. Moffitt doctors were great. I can't say enough good about them. They are looking to start a new protocol there with Til and one of the Braf drugs since they think it will be less side effects than il2.

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