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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

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  • 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

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      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

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      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

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      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

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      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

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        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…

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        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…

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      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

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      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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        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

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        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

        Loading spinner
      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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