leukine

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  • Post
    • July 26, 2011 at 9:55 pm
    moore
    Participant

      I am about to finish a year of Leukine injections.  I contracted MM in 2004.  In the past 3 years I have had a lung resection and a spenectomy.  Leukine was ordered to strengthen my immune system and, hopefully, prevent melanoma cells from attaching to other organs.  So far, so good.  Latest scans are clear.  My wife is terrified that lesions will reappear after I go off of Leukine.  Do other MM patients have experience with Leukine?

      Moore

      I am about to finish a year of Leukine injections.  I contracted MM in 2004.  In the past 3 years I have had a lung resection and a spenectomy.  Leukine was ordered to strengthen my immune system and, hopefully, prevent melanoma cells from attaching to other organs.  So far, so good.  Latest scans are clear.  My wife is terrified that lesions will reappear after I go off of Leukine.  Do other MM patients have experience with Leukine?

      Moore

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    • Replies
        • July 26, 2011 at 10:34 pm
        Harry in Fair Oaks
        Participant

          I did 3 years of leukine after the resection of a lung tumor in 2000.  I can't say whether or not it helped, but I stayed NED until this year (so almost 11-years disease-free survival).

          It did come back in multiple places in February, and I'm now on a BRAF/MEK trial which seems to be working very well.

          Best wishes,

          Harry

           

          • July 26, 2011 at 10:34 pm
          Harry in Fair Oaks
          Participant

            I did 3 years of leukine after the resection of a lung tumor in 2000.  I can't say whether or not it helped, but I stayed NED until this year (so almost 11-years disease-free survival).

            It did come back in multiple places in February, and I'm now on a BRAF/MEK trial which seems to be working very well.

            Best wishes,

            Harry

             

              • July 26, 2011 at 10:38 pm
              moore
              Participant

                Hi Harry – Thanks for the news.  Take care.

                Ed

                • July 26, 2011 at 10:38 pm
                moore
                Participant

                  Hi Harry – Thanks for the news.  Take care.

                  Ed

                  • July 27, 2011 at 8:20 pm
                  killmel
                  Participant

                    Hi Harry,

                     

                    How is the Brak/Mek trial going for you??

                    I am still interested in this trial.  Do you know if angeles clinic is still recruiting for melanoma patients.You were going to ask the protocol nurse. Thanks for trying to find out of this trial is still recruiting for those of us interested. Best to you. Mary

                    In one of your  previous post you stated:

                    Harry in Fair Oaks has posted a reply to Braf + V600E:

                    My guess is that it is open.  It sounds to me like they are reticent to have the staff answering the phones discuss what may or may not be available to a caller.  Probably want you to schedule a consult with a Dr. to discuss your options – of course that would entail a substantial fee ($500 in my case) as well as travel costs.

                    I am on the trial not because I went "shopping" for it – I scheduled a consult with Dr. O'Day for a 2nd opinion after my HMO Dr. recommended IL2.  We discussed a couple of options, and after I tested BRAF+ , that's what Dr. O'Day recommended.

                    I will drop a note to my protocol nurse.  Maybe she can say.  In case she does, it will help if you give me your email address.

                    Best wishes,

                    Harry

                    • July 27, 2011 at 8:20 pm
                    killmel
                    Participant

                      Hi Harry,

                       

                      How is the Brak/Mek trial going for you??

                      I am still interested in this trial.  Do you know if angeles clinic is still recruiting for melanoma patients.You were going to ask the protocol nurse. Thanks for trying to find out of this trial is still recruiting for those of us interested. Best to you. Mary

                      In one of your  previous post you stated:

                      Harry in Fair Oaks has posted a reply to Braf + V600E:

                      My guess is that it is open.  It sounds to me like they are reticent to have the staff answering the phones discuss what may or may not be available to a caller.  Probably want you to schedule a consult with a Dr. to discuss your options – of course that would entail a substantial fee ($500 in my case) as well as travel costs.

                      I am on the trial not because I went "shopping" for it – I scheduled a consult with Dr. O'Day for a 2nd opinion after my HMO Dr. recommended IL2.  We discussed a couple of options, and after I tested BRAF+ , that's what Dr. O'Day recommended.

                      I will drop a note to my protocol nurse.  Maybe she can say.  In case she does, it will help if you give me your email address.

                      Best wishes,

                      Harry

                      • July 27, 2011 at 8:58 pm
                      Harry in Fair Oaks
                      Participant

                        My protocol nurse is on vacation, but I just spoke to my trial coordinator.  He said the particular trial I'm on is closed for MM – the cohort trial for colorectal cancer is still open, but of course that's for another board.

                        When I went to the Angeles Clinic in February, there was also talk of placing me in a BRAF only trial.  I think the term used was something like "extended access," and it amounted to a compassionate use trial.  While I don't know how much info you can get over the phone, it maybe worth you calling to find out.

                        Best wishes,

                        Harry

                        • July 27, 2011 at 8:58 pm
                        Harry in Fair Oaks
                        Participant

                          My protocol nurse is on vacation, but I just spoke to my trial coordinator.  He said the particular trial I'm on is closed for MM – the cohort trial for colorectal cancer is still open, but of course that's for another board.

                          When I went to the Angeles Clinic in February, there was also talk of placing me in a BRAF only trial.  I think the term used was something like "extended access," and it amounted to a compassionate use trial.  While I don't know how much info you can get over the phone, it maybe worth you calling to find out.

                          Best wishes,

                          Harry

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