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IL2 success…what happens now?

Forums General Melanoma Community IL2 success…what happens now?

  • Post
    tricialeigh44
    Participant

      My mom has just got her results from her second round of IL2. Her tumors have again shrunk, so she will be heading back to Roswell Park for round 3 of IL2. I was just wondering from any NED patients, what happens next. After 3 rounds of IL2, do you go back yearly? What happens if the tumors grow again?

       

      It is so hard not to focus on all the what ifs. I should and am eternally grateful that she is an IL2 responder. Her recent CT showed most of her tumors disappeared! This is FANTASTIC news. I will keep praying that the rest of the tumors disappear as well.

      My mom has just got her results from her second round of IL2. Her tumors have again shrunk, so she will be heading back to Roswell Park for round 3 of IL2. I was just wondering from any NED patients, what happens next. After 3 rounds of IL2, do you go back yearly? What happens if the tumors grow again?

       

      It is so hard not to focus on all the what ifs. I should and am eternally grateful that she is an IL2 responder. Her recent CT showed most of her tumors disappeared! This is FANTASTIC news. I will keep praying that the rest of the tumors disappear as well.

      I have picked up tonnes of information regarding IL2 from Roswell park. I keep meaning to post it on this bulletin board for all those that are beginning this treatment. This disease is terrifying, so if I can help inform anyone about IL2, I will certainly do my best to pass on our experiences.

      Can anyone tell me what happens next????

       

      Thanks so much

      Tricia

    Viewing 7 reply threads
    • Replies
        FormerCaregiver
        Participant

          It is encouraging to read of the good response to interleukin-2. Although I
          can't answer your specific questions about IL-2, melanoma treatment is
          changing very fast. With this in mind, it is wise to be aware that IL-2 has
          been around for a while.

          My late wife responded well to standard chemo (fotemustine), but the
          duration of this response was not very long. I believe that IL-2 may work
          better than ordinary chemo for some people, although newer experimental
          treatments sound much more promising.

          Unfortunately, melanoma is a very devious cancer and it is very likely to
          outsmart nearly all treatments that we have. Although existing tumors may
          shrink or even disappear, there is a chance that other tumors may appear
          elsewhere in the body. Therefore, clinical trials are the next thing that
          most people will look at.

          Here is a link to the clinical trials that are available:
          http://www.clinicaltrials.gov/ct2/results/refine?term=melanoma

          Frank

          FormerCaregiver
          Participant

            It is encouraging to read of the good response to interleukin-2. Although I
            can't answer your specific questions about IL-2, melanoma treatment is
            changing very fast. With this in mind, it is wise to be aware that IL-2 has
            been around for a while.

            My late wife responded well to standard chemo (fotemustine), but the
            duration of this response was not very long. I believe that IL-2 may work
            better than ordinary chemo for some people, although newer experimental
            treatments sound much more promising.

            Unfortunately, melanoma is a very devious cancer and it is very likely to
            outsmart nearly all treatments that we have. Although existing tumors may
            shrink or even disappear, there is a chance that other tumors may appear
            elsewhere in the body. Therefore, clinical trials are the next thing that
            most people will look at.

            Here is a link to the clinical trials that are available:
            http://www.clinicaltrials.gov/ct2/results/refine?term=melanoma

            Frank

            akls
            Participant

              Tricia,

              I'm so happy your Mom is a responder!  Maybe more people will see this post and respond since it's the beginning of the week.

              Congrats.

              Amy S. in Michigan

              akls
              Participant

                Tricia,

                I'm so happy your Mom is a responder!  Maybe more people will see this post and respond since it's the beginning of the week.

                Congrats.

                Amy S. in Michigan

                KatyWI
                Participant

                  Hi Tricia,

                  Of course, no one can tell you what happens next because this darn disease is so variable.  But here's how it happened for me.  Maybe a few others will post their experiences to give you a range of ideas of how your mom's follow up might play out.

                  I was down to one pesky subQ after two complete rounds of IL-2.  Everything else responded but this one wasn't budging.  I had the first half of round three, had the subQ resected, and then had the second half of round 3.  I had the regular PET scan four weeks later and was declared NED.  My next follow up was three months later.  (Unfortunately, I had a recurrence at that scan, but the plan had been to scan every three months.)

                  If she continues to respond after round 3 but has not had a complete response, it's possible they might offer yet another round.  I don't know.  If she recurs right away, my understating is that more IL-2 would not be offered.  However, I remember someone (probably Jane from Maine) who'd had a complete response saying that her doctor stated that if her disease were to recur after at least two years, her doctor would offer more IL-2. 

                  So there's some possibilities of what might happen.  Now here's what i hope DOES happen…the last of the little buggers are blasted into oblivion by round 3, never, ever to be heard from again!

                  Best,

                  KatyWI

                    tricialeigh44
                    Participant

                      Thanks so much for all your responses. There was a bit of confusion on the CT report, so Roswell Park is requesting the CD's to look at the CTs themselves. Little bit worried about this.

                       

                      As with everyone on this board, I am so sick of that pesky sick feeling in my stomach everytime we have an appointment or think about results. I constantly feel sick and am CONSTANTLY wondering what will happen next. I am trying SO hard to just enjoy the time my mom has with my family and not think what will happen next.  My mum is very healthy and feeling great right now (thank God!) I adore my mum and I am scared to death for her.

                      I wish this nightmare would end.

                      Sorry for venting…

                      tricialeigh44
                      Participant

                        Thanks so much for all your responses. There was a bit of confusion on the CT report, so Roswell Park is requesting the CD's to look at the CTs themselves. Little bit worried about this.

                         

                        As with everyone on this board, I am so sick of that pesky sick feeling in my stomach everytime we have an appointment or think about results. I constantly feel sick and am CONSTANTLY wondering what will happen next. I am trying SO hard to just enjoy the time my mom has with my family and not think what will happen next.  My mum is very healthy and feeling great right now (thank God!) I adore my mum and I am scared to death for her.

                        I wish this nightmare would end.

                        Sorry for venting…

                      KatyWI
                      Participant

                        Hi Tricia,

                        Of course, no one can tell you what happens next because this darn disease is so variable.  But here's how it happened for me.  Maybe a few others will post their experiences to give you a range of ideas of how your mom's follow up might play out.

                        I was down to one pesky subQ after two complete rounds of IL-2.  Everything else responded but this one wasn't budging.  I had the first half of round three, had the subQ resected, and then had the second half of round 3.  I had the regular PET scan four weeks later and was declared NED.  My next follow up was three months later.  (Unfortunately, I had a recurrence at that scan, but the plan had been to scan every three months.)

                        If she continues to respond after round 3 but has not had a complete response, it's possible they might offer yet another round.  I don't know.  If she recurs right away, my understating is that more IL-2 would not be offered.  However, I remember someone (probably Jane from Maine) who'd had a complete response saying that her doctor stated that if her disease were to recur after at least two years, her doctor would offer more IL-2. 

                        So there's some possibilities of what might happen.  Now here's what i hope DOES happen…the last of the little buggers are blasted into oblivion by round 3, never, ever to be heard from again!

                        Best,

                        KatyWI

                        Rebecca and Bob
                        Participant

                          Tricia,

                           

                          My husband responded to IL-2 3 rounds and there was one tumor left that shrunk but did not disappear. They watched it for a year then surgically removed it, the tumor was dead. That was in his lung. We were told since the tumor was completely dead that he was a complete responder. Unfortunately 3 months after the lung surgery 3 small intestinal tumors showed up. He had these surgically removed. Since then 20 months since last surgery he has been NED. I think they basically watched for as long as they can to see if the tumors grow/disappear because it takes a long time for them to be absorbed if they are dead tissue. One thing that would be helpful is a PET to see if the tumors are even active. My husband's lung tumor was not.

                          It's hard to say what will happen. If possible the doctors may opt to try and sugically remove any active residual disease after the IL-2 and then you mom could be NED that way. I would look at it this way, it's great that your mom responded to the first line of immuntherapy because I think it may make the chances of them responding to another even greater, but that's just my opinion.

                           

                          Good luck.

                          Rebecca

                            FormerCaregiver
                            Participant

                              It is interesting to look at cases where people have had NED (no evidence of
                              disease) for a long time. They may have reached stage III or IV, yet they
                              remain ok despite the great odds against them. Although it is hard to find
                              reasons for this, I feel that the immune systems of a small number of people
                              are able to somehow keep them healthy if they have been given a suitable
                              drug at the right time. Surgery also has an important role whenever new
                              tumors appear, as it reduces the overall tumor burden.

                              At the moment, I am intrigued by the effects that Leukine and surgery seem
                              to have on increasing one's chances of long-term survival.

                              Frank

                              FormerCaregiver
                              Participant

                                It is interesting to look at cases where people have had NED (no evidence of
                                disease) for a long time. They may have reached stage III or IV, yet they
                                remain ok despite the great odds against them. Although it is hard to find
                                reasons for this, I feel that the immune systems of a small number of people
                                are able to somehow keep them healthy if they have been given a suitable
                                drug at the right time. Surgery also has an important role whenever new
                                tumors appear, as it reduces the overall tumor burden.

                                At the moment, I am intrigued by the effects that Leukine and surgery seem
                                to have on increasing one's chances of long-term survival.

                                Frank

                              Rebecca and Bob
                              Participant

                                Tricia,

                                 

                                My husband responded to IL-2 3 rounds and there was one tumor left that shrunk but did not disappear. They watched it for a year then surgically removed it, the tumor was dead. That was in his lung. We were told since the tumor was completely dead that he was a complete responder. Unfortunately 3 months after the lung surgery 3 small intestinal tumors showed up. He had these surgically removed. Since then 20 months since last surgery he has been NED. I think they basically watched for as long as they can to see if the tumors grow/disappear because it takes a long time for them to be absorbed if they are dead tissue. One thing that would be helpful is a PET to see if the tumors are even active. My husband's lung tumor was not.

                                It's hard to say what will happen. If possible the doctors may opt to try and sugically remove any active residual disease after the IL-2 and then you mom could be NED that way. I would look at it this way, it's great that your mom responded to the first line of immuntherapy because I think it may make the chances of them responding to another even greater, but that's just my opinion.

                                 

                                Good luck.

                                Rebecca

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