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Leukin

  • Post
    Jessmoon
    Participant

      My husband and I just got back from visiting Mayo Clinic for a second opinion regarding his stage IV melanoma that was diagnosed last month.  Our oncologist in Des Moines (along with a melanoma specialist at the University of Iowa), has recommended, he enroll in the ECOG study where he would either receive Interferon or Yervoy. 

      My husband and I just got back from visiting Mayo Clinic for a second opinion regarding his stage IV melanoma that was diagnosed last month.  Our oncologist in Des Moines (along with a melanoma specialist at the University of Iowa), has recommended, he enroll in the ECOG study where he would either receive Interferon or Yervoy. 

      Today, Dr. Markovic at Mayo Clinic, has recommended a different treatment, Leukin.  He would inject this daily for 14 days and then be off the medication for 14 days.  This would continue for 3 years.  He does not prescribe Interferon because it does not increase survival time and has many side effects. He is also concerned about Yervoy, because studies have shown that 5% of patients died during the research studies while taking the medication.  He has been using Leukin for over 10 years and has seen good results, plus he reports minimal side effects. 

      Has anyone been on this medication? Any suggestions?

    Viewing 17 reply threads
    • Replies
        LynnLuc
        Participant

          No, but when I went to Mayo that is all the recommended to me after I had surgery. I decided not to do it and went with a anti pd 1 trial with peptides instead. Later my onc at Mayo said I was probably right because for me my melanoma was in the lymph nides and leukine was not shown to prolong life in thos cases.

          LynnLuc
          Participant

            No, but when I went to Mayo that is all the recommended to me after I had surgery. I decided not to do it and went with a anti pd 1 trial with peptides instead. Later my onc at Mayo said I was probably right because for me my melanoma was in the lymph nides and leukine was not shown to prolong life in thos cases.

            LynnLuc
            Participant

              No, but when I went to Mayo that is all the recommended to me after I had surgery. I decided not to do it and went with a anti pd 1 trial with peptides instead. Later my onc at Mayo said I was probably right because for me my melanoma was in the lymph nides and leukine was not shown to prolong life in thos cases.

              FormerCaregiver
              Participant

                Welcome to our forum. I have read good things about Leukin (GM-CSF), and believe that it
                is well worth considering. It has been found to change the nature of melanoma in some
                people, making any new tumours more manageable with surgery. See:
                http://www.melanoma.org/community/mpip-melanoma-patients-information-page/ned-stage-iv-and-gm-csf-leukine

                Hope this helps.

                Frank from Australia

                  Gene_S
                  Participant

                    Frank,

                    Please check to see if you posted the correct link? When I click onto

                    the link that you posted it takes me to the mpip home page.

                    Thanks, Gene

                    FormerCaregiver
                    Participant

                      Sorry, Gene I am not sure why it isn't working. It is ok from my browser, but that could
                      be the way that Firefox is set up. So, try this instead:
                      http://www.melanoma.org/search/node/NED%20at%20Stage%20IV%20and%20GM-CSF%20%28Leukine%29

                      If that doesn't work, copy and paste the following into the search box at the top of the
                      page – NED at Stage IV and GM-CSF (Leukine)

                      Best wishes

                      Frank from Australia

                      FormerCaregiver
                      Participant

                        Sorry, Gene I am not sure why it isn't working. It is ok from my browser, but that could
                        be the way that Firefox is set up. So, try this instead:
                        http://www.melanoma.org/search/node/NED%20at%20Stage%20IV%20and%20GM-CSF%20%28Leukine%29

                        If that doesn't work, copy and paste the following into the search box at the top of the
                        page – NED at Stage IV and GM-CSF (Leukine)

                        Best wishes

                        Frank from Australia

                        FormerCaregiver
                        Participant

                          Sorry, Gene I am not sure why it isn't working. It is ok from my browser, but that could
                          be the way that Firefox is set up. So, try this instead:
                          http://www.melanoma.org/search/node/NED%20at%20Stage%20IV%20and%20GM-CSF%20%28Leukine%29

                          If that doesn't work, copy and paste the following into the search box at the top of the
                          page – NED at Stage IV and GM-CSF (Leukine)

                          Best wishes

                          Frank from Australia

                          Gene_S
                          Participant

                            Frank,

                            Please check to see if you posted the correct link? When I click onto

                            the link that you posted it takes me to the mpip home page.

                            Thanks, Gene

                            Gene_S
                            Participant

                              Frank,

                              Please check to see if you posted the correct link? When I click onto

                              the link that you posted it takes me to the mpip home page.

                              Thanks, Gene

                            FormerCaregiver
                            Participant

                              Welcome to our forum. I have read good things about Leukin (GM-CSF), and believe that it
                              is well worth considering. It has been found to change the nature of melanoma in some
                              people, making any new tumours more manageable with surgery. See:
                              http://www.melanoma.org/community/mpip-melanoma-patients-information-page/ned-stage-iv-and-gm-csf-leukine

                              Hope this helps.

                              Frank from Australia

                              FormerCaregiver
                              Participant

                                Welcome to our forum. I have read good things about Leukin (GM-CSF), and believe that it
                                is well worth considering. It has been found to change the nature of melanoma in some
                                people, making any new tumours more manageable with surgery. See:
                                http://www.melanoma.org/community/mpip-melanoma-patients-information-page/ned-stage-iv-and-gm-csf-leukine

                                Hope this helps.

                                Frank from Australia

                                Gene_S
                                Participant

                                  My question to you is (please be honest) what condition, health wise (other than melanoma) is your husband really in? This answer will make a big difference in what treatment he should be receiving. If he is in really poor condition, Yervoy may not be the course that he should be taking.

                                  As far as the interferon, your comments are correct!  So why would they even suggest that he takes it? I would avoid that trial.

                                  My thoughts on Dr. Markovic recommendation would be to ask him for his track record in his patients doing ONLY Leukin. any with total remissions, long time survivors, etc!  I suggest doing more homework on only using Leukin to fight his melanoma.

                                  Best wishes,

                                  Gene  (stage IV on a Yervoy with GM-CSF trial)

                                  Gene_S
                                  Participant

                                    My question to you is (please be honest) what condition, health wise (other than melanoma) is your husband really in? This answer will make a big difference in what treatment he should be receiving. If he is in really poor condition, Yervoy may not be the course that he should be taking.

                                    As far as the interferon, your comments are correct!  So why would they even suggest that he takes it? I would avoid that trial.

                                    My thoughts on Dr. Markovic recommendation would be to ask him for his track record in his patients doing ONLY Leukin. any with total remissions, long time survivors, etc!  I suggest doing more homework on only using Leukin to fight his melanoma.

                                    Best wishes,

                                    Gene  (stage IV on a Yervoy with GM-CSF trial)

                                    Gene_S
                                    Participant

                                      My question to you is (please be honest) what condition, health wise (other than melanoma) is your husband really in? This answer will make a big difference in what treatment he should be receiving. If he is in really poor condition, Yervoy may not be the course that he should be taking.

                                      As far as the interferon, your comments are correct!  So why would they even suggest that he takes it? I would avoid that trial.

                                      My thoughts on Dr. Markovic recommendation would be to ask him for his track record in his patients doing ONLY Leukin. any with total remissions, long time survivors, etc!  I suggest doing more homework on only using Leukin to fight his melanoma.

                                      Best wishes,

                                      Gene  (stage IV on a Yervoy with GM-CSF trial)

                                      Hereiam
                                      Participant

                                        Hi, 

                                        I`m sorry about your husbands diagnosis. 

                                        I can`t really say anything about mentioned treatment methods (my aunt, melanoma stage 3 patient was using virotherapy after surgeries), but one thing I know for sure. And that is – do pay attention to 'details' (meaning, side-effects these treatments are causing)! Cuz, I`m sorry to sound so harsh, but there is no point in living few months (or years) longer with the life quality being close to 0! 

                                        Of course, that`s just my opinion, but I`ve seen so many patients sick of their lives, depressed all the time, feeling pain in all parts of body. What for? For those few months?
                                        My aunt was lucky to not experience seviere pain or side-effects, but I know that there are many out there, who lives with pain every day.

                                        So, I advice you to really consider your possibilities according to what life-quality they can offer you! 

                                        Praying for your family, and hoping you`ll find your best solution towards fighting melanoma!

                                        Hereiam
                                        Participant

                                          Hi, 

                                          I`m sorry about your husbands diagnosis. 

                                          I can`t really say anything about mentioned treatment methods (my aunt, melanoma stage 3 patient was using virotherapy after surgeries), but one thing I know for sure. And that is – do pay attention to 'details' (meaning, side-effects these treatments are causing)! Cuz, I`m sorry to sound so harsh, but there is no point in living few months (or years) longer with the life quality being close to 0! 

                                          Of course, that`s just my opinion, but I`ve seen so many patients sick of their lives, depressed all the time, feeling pain in all parts of body. What for? For those few months?
                                          My aunt was lucky to not experience seviere pain or side-effects, but I know that there are many out there, who lives with pain every day.

                                          So, I advice you to really consider your possibilities according to what life-quality they can offer you! 

                                          Praying for your family, and hoping you`ll find your best solution towards fighting melanoma!

                                          Hereiam
                                          Participant

                                            Hi, 

                                            I`m sorry about your husbands diagnosis. 

                                            I can`t really say anything about mentioned treatment methods (my aunt, melanoma stage 3 patient was using virotherapy after surgeries), but one thing I know for sure. And that is – do pay attention to 'details' (meaning, side-effects these treatments are causing)! Cuz, I`m sorry to sound so harsh, but there is no point in living few months (or years) longer with the life quality being close to 0! 

                                            Of course, that`s just my opinion, but I`ve seen so many patients sick of their lives, depressed all the time, feeling pain in all parts of body. What for? For those few months?
                                            My aunt was lucky to not experience seviere pain or side-effects, but I know that there are many out there, who lives with pain every day.

                                            So, I advice you to really consider your possibilities according to what life-quality they can offer you! 

                                            Praying for your family, and hoping you`ll find your best solution towards fighting melanoma!

                                            sharmon
                                            Participant

                                              Hi, 

                                              My name is Sharon and my husband is Brent.  This is his  story with Leukine,  Back in 2007 Brents melanoma presented under his toenail.  Acural melanoma. His toe was amputated and lymph nodes involved were removed,  Staged IIIc.  We went to OHIO state university to see Dr Kari Kendra,  There was a trial for Leukine and Brent started in Nov. of 2007.  He was NED at the time and a year later Nov. 2008 he was stll NED. The Dr. said this is your last dose???????  What the heck,?  I knew from MY studies that people on the west coast were on  the injections for 2 or 3 more years.

                                              Fast forward to May of 2009.  Five months after his last dose of Leukine he has full blown metastatic melanoma in both lungs. 

                                              He is now on a GSK MEK drug / Alimta trial at MD Anderson and he is stable. 

                                              Had I to over again, I would have found a way to continue the Leukine, but I trusted our oncologist to know.  Her explanation at the time was someone had said that overall survival was not effected weather the patient was on 1 or 3 years.

                                              The side effects were very very mild and he worked the whole year while on the study.

                                               

                                              Hope this helps,

                                              Sharon and Brent

                                              sharmon
                                              Participant

                                                Hi, 

                                                My name is Sharon and my husband is Brent.  This is his  story with Leukine,  Back in 2007 Brents melanoma presented under his toenail.  Acural melanoma. His toe was amputated and lymph nodes involved were removed,  Staged IIIc.  We went to OHIO state university to see Dr Kari Kendra,  There was a trial for Leukine and Brent started in Nov. of 2007.  He was NED at the time and a year later Nov. 2008 he was stll NED. The Dr. said this is your last dose???????  What the heck,?  I knew from MY studies that people on the west coast were on  the injections for 2 or 3 more years.

                                                Fast forward to May of 2009.  Five months after his last dose of Leukine he has full blown metastatic melanoma in both lungs. 

                                                He is now on a GSK MEK drug / Alimta trial at MD Anderson and he is stable. 

                                                Had I to over again, I would have found a way to continue the Leukine, but I trusted our oncologist to know.  Her explanation at the time was someone had said that overall survival was not effected weather the patient was on 1 or 3 years.

                                                The side effects were very very mild and he worked the whole year while on the study.

                                                 

                                                Hope this helps,

                                                Sharon and Brent

                                                sharmon
                                                Participant

                                                  Hi, 

                                                  My name is Sharon and my husband is Brent.  This is his  story with Leukine,  Back in 2007 Brents melanoma presented under his toenail.  Acural melanoma. His toe was amputated and lymph nodes involved were removed,  Staged IIIc.  We went to OHIO state university to see Dr Kari Kendra,  There was a trial for Leukine and Brent started in Nov. of 2007.  He was NED at the time and a year later Nov. 2008 he was stll NED. The Dr. said this is your last dose???????  What the heck,?  I knew from MY studies that people on the west coast were on  the injections for 2 or 3 more years.

                                                  Fast forward to May of 2009.  Five months after his last dose of Leukine he has full blown metastatic melanoma in both lungs. 

                                                  He is now on a GSK MEK drug / Alimta trial at MD Anderson and he is stable. 

                                                  Had I to over again, I would have found a way to continue the Leukine, but I trusted our oncologist to know.  Her explanation at the time was someone had said that overall survival was not effected weather the patient was on 1 or 3 years.

                                                  The side effects were very very mild and he worked the whole year while on the study.

                                                   

                                                  Hope this helps,

                                                  Sharon and Brent

                                                  cherylobrien
                                                  Participant

                                                    Hi,

                                                    My husband is being treated at the Dana Farber Cancer Center and has stage 1V melanoma also. Daignosed May 2013.  He had a craniotomy to remove the one met in his right temporal lobe, followed by 3 days of Cyber Knife radiation.  The PET Scan showed the tumor in his brain is completely gone but there is one more in one lymph node in his neck.  The team decided to start medication treatment to see if it gets rid of the tumor or shrinks it, before going in to remove it now.  He started taking the Leukine injections in conjunction with ippi (yervoy) infusions.  14 days of injections and 7 days off after each infusion.  We will do another PET Scan at the end of the 4 infusion/injection cycle.

                                                     

                                                    Cheryl

                                                    cherylobrien
                                                    Participant

                                                      Hi,

                                                      My husband is being treated at the Dana Farber Cancer Center and has stage 1V melanoma also. Daignosed May 2013.  He had a craniotomy to remove the one met in his right temporal lobe, followed by 3 days of Cyber Knife radiation.  The PET Scan showed the tumor in his brain is completely gone but there is one more in one lymph node in his neck.  The team decided to start medication treatment to see if it gets rid of the tumor or shrinks it, before going in to remove it now.  He started taking the Leukine injections in conjunction with ippi (yervoy) infusions.  14 days of injections and 7 days off after each infusion.  We will do another PET Scan at the end of the 4 infusion/injection cycle.

                                                       

                                                      Cheryl

                                                      cherylobrien
                                                      Participant

                                                        Hi,

                                                        My husband is being treated at the Dana Farber Cancer Center and has stage 1V melanoma also. Daignosed May 2013.  He had a craniotomy to remove the one met in his right temporal lobe, followed by 3 days of Cyber Knife radiation.  The PET Scan showed the tumor in his brain is completely gone but there is one more in one lymph node in his neck.  The team decided to start medication treatment to see if it gets rid of the tumor or shrinks it, before going in to remove it now.  He started taking the Leukine injections in conjunction with ippi (yervoy) infusions.  14 days of injections and 7 days off after each infusion.  We will do another PET Scan at the end of the 4 infusion/injection cycle.

                                                         

                                                        Cheryl

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