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NED at Stage IV and GM-CSF (Leukine)

Forums General Melanoma Community NED at Stage IV and GM-CSF (Leukine)

  • Post
    FormerCaregiver
    Participant

      Could it be that long-term stage IV survivors have something in common? I
      think that it would be interesting to see how many have had GM-CSF
      (Leukine) at any time.

      From what I have read, Leukine tends to change the nature of melanoma in
      some patients. One study has found that "… the recurrence is changed, in
      that they are solitary, and allow for surgical excision".

      It would be great to get some opinions on this. So what do you think?

      Frank
      (PS: NED means no evidence of disease).

      Could it be that long-term stage IV survivors have something in common? I
      think that it would be interesting to see how many have had GM-CSF
      (Leukine) at any time.

      From what I have read, Leukine tends to change the nature of melanoma in
      some patients. One study has found that "… the recurrence is changed, in
      that they are solitary, and allow for surgical excision".

      It would be great to get some opinions on this. So what do you think?

      Frank
      (PS: NED means no evidence of disease).

    Viewing 7 reply threads
    • Replies
        lhaley
        Participant

          Did one year of GMCSF on a trial. Because of recurrance they did disclose that I got the drug and not a placebo. I consider myself to be a long term survivor. 4.5 years as stage IV!!  Have had solitary tumors return 5 times. Right now they are watching 2 nodules in lung.  I often wonder about Leukines role in my journey.  My case is slightly different since it originally had taken 27 years to metasticize. 

          Unfortunately the trials did not prove that leukine changed the survival rate.  At one time this drug was being constantly suggested on this board. I hope you get lots of positive responses!

          Linda

            lhaley
            Participant

              I should add that those of us who took the drug were stage IV NED at the time. That alone is a unique group.

              Linda

              lhaley
              Participant

                I should add that those of us who took the drug were stage IV NED at the time. That alone is a unique group.

                Linda

                FormerCaregiver
                Participant

                  Thanks for your reply. 4.5 years as a stage IV survivor is remarkable
                  achievement!  It seems that although Leukine does not increase the overall
                  survival rate, it does change the nature of any future tumors that might
                  appear. This means that they can be removed by surgery, leaving the chance
                  of achieving NED in some people.

                  It would be great to read what experiences other people have had.

                  Frank

                  FormerCaregiver
                  Participant

                    Thanks for your reply. 4.5 years as a stage IV survivor is remarkable
                    achievement!  It seems that although Leukine does not increase the overall
                    survival rate, it does change the nature of any future tumors that might
                    appear. This means that they can be removed by surgery, leaving the chance
                    of achieving NED in some people.

                    It would be great to read what experiences other people have had.

                    Frank

                    MRFUser2011
                    Participant

                      I was offered Leukine post-op in 5/08 and I declined.  I had regional lymph nodes involved and removed.  When I saw my surgeon last month to have the lung nodule removed, he said he probably would have made the same decision that I did.  My local oncologist had told me that Leukine had a less than 5% effective rate and did nothing to prolong survival.  Well, that was back when I listened to statistics!

                      My surgeon said it actually is shown to have a more marked benefit for stage IV melanoma patients than Stage III.   I am now strongly considering beginning Leukine injections after my next PET/CT (if it shows the left nodule has shrunk or disappeared which I am told can happen post-op for removal of another met because the immune system ramps up) or after surgery to remove the nodule if it is still there.  According to the medical oncologist and my surgical oncologist, it gives me a statistical 5% increased chance of survival  (maybe more, each of us is an individual) and that feels a LOT more important now than when I believed I was done with melanoma for life.

                      Blessings, Shari

                      MRFUser2011
                      Participant

                        I was offered Leukine post-op in 5/08 and I declined.  I had regional lymph nodes involved and removed.  When I saw my surgeon last month to have the lung nodule removed, he said he probably would have made the same decision that I did.  My local oncologist had told me that Leukine had a less than 5% effective rate and did nothing to prolong survival.  Well, that was back when I listened to statistics!

                        My surgeon said it actually is shown to have a more marked benefit for stage IV melanoma patients than Stage III.   I am now strongly considering beginning Leukine injections after my next PET/CT (if it shows the left nodule has shrunk or disappeared which I am told can happen post-op for removal of another met because the immune system ramps up) or after surgery to remove the nodule if it is still there.  According to the medical oncologist and my surgical oncologist, it gives me a statistical 5% increased chance of survival  (maybe more, each of us is an individual) and that feels a LOT more important now than when I believed I was done with melanoma for life.

                        Blessings, Shari

                      lhaley
                      Participant

                        Did one year of GMCSF on a trial. Because of recurrance they did disclose that I got the drug and not a placebo. I consider myself to be a long term survivor. 4.5 years as stage IV!!  Have had solitary tumors return 5 times. Right now they are watching 2 nodules in lung.  I often wonder about Leukines role in my journey.  My case is slightly different since it originally had taken 27 years to metasticize. 

                        Unfortunately the trials did not prove that leukine changed the survival rate.  At one time this drug was being constantly suggested on this board. I hope you get lots of positive responses!

                        Linda

                        LynnLuc
                        Participant

                          After I had surgery  my Mayo onc  at Rochester told me it was the only option since I was NED after surgery…after rejecting it to consider other trials…I went back to her  and she said I had probably made a wise decision because my melanoma was in a lymph node and Leukine does nothing for long term survival if it's in the  lymph nodes.

                          March 26 will make it one year NED….just had myl scans from the clinicial trial and hoping I remain NED…

                          LynnLuc
                          Participant

                            After I had surgery  my Mayo onc  at Rochester told me it was the only option since I was NED after surgery…after rejecting it to consider other trials…I went back to her  and she said I had probably made a wise decision because my melanoma was in a lymph node and Leukine does nothing for long term survival if it's in the  lymph nodes.

                            March 26 will make it one year NED….just had myl scans from the clinicial trial and hoping I remain NED…

                            KellieSue
                            Participant

                              I started Leukine in Nov 2008 after finding lung nodules in June of that year. I took it on and off for a 1 1/2yrs (in between surgeries and recovery) I did seem to have slow growing disease and isolated recurrances that were surgically resectable.

                              I stopped taking it around Jan2010 when I developed a thyroid tumor that was unresectable at the time.

                              I think leukine did great things in slowing down and isolating my melanoma.

                              Kellie(from Iowa) Stage IV

                               

                                MRFUser2011
                                Participant

                                  Hi Kellie,

                                  Thanks for sharing your experience with Leukine.  Can you tell me what kind of side effects (if any) you had?  Are the injections painful?  How easy is it to learn to do it for yourself?  I may be starting it soon and am looking for more details.  Thanks.

                                  I hope the BRAF is successful for you.  

                                  Blessings, Shari

                                  MRFUser2011
                                  Participant

                                    Hi Kellie,

                                    Thanks for sharing your experience with Leukine.  Can you tell me what kind of side effects (if any) you had?  Are the injections painful?  How easy is it to learn to do it for yourself?  I may be starting it soon and am looking for more details.  Thanks.

                                    I hope the BRAF is successful for you.  

                                    Blessings, Shari

                                  KellieSue
                                  Participant

                                    I started Leukine in Nov 2008 after finding lung nodules in June of that year. I took it on and off for a 1 1/2yrs (in between surgeries and recovery) I did seem to have slow growing disease and isolated recurrances that were surgically resectable.

                                    I stopped taking it around Jan2010 when I developed a thyroid tumor that was unresectable at the time.

                                    I think leukine did great things in slowing down and isolating my melanoma.

                                    Kellie(from Iowa) Stage IV

                                     

                                    TAC
                                    Participant

                                      I have been Stage IIIb for 9 years. Have had a total of 6 recurrences…all removed surgically. Had tried interferon for 4 1/2 months and had a recurrence; tried radiation and had recurrence; tried a vaccine and had a recurrence. Have been on Leukine for 6+ years and have had 3 recurrences while on it and all were surgically removed. I'm still taking it. I saw somewhere that they are starting clinical trials with Leukine in Alzheimers patients so maybe it won't totally prevent melanoma from recurring but will prevent me from getting Alzheimers if I live that long.

                                      TAC
                                      Participant

                                        I have been Stage IIIb for 9 years. Have had a total of 6 recurrences…all removed surgically. Had tried interferon for 4 1/2 months and had a recurrence; tried radiation and had recurrence; tried a vaccine and had a recurrence. Have been on Leukine for 6+ years and have had 3 recurrences while on it and all were surgically removed. I'm still taking it. I saw somewhere that they are starting clinical trials with Leukine in Alzheimers patients so maybe it won't totally prevent melanoma from recurring but will prevent me from getting Alzheimers if I live that long.

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