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New to community – beginning leukine tomorrow
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New to community – beginning leukine tomorrow

› Forums › General Melanoma Community › New to community – beginning leukine tomorrow

  • Post
    • January 23, 2013 at 12:46 am
    Carolmcq
    Participant
      Hello all,
      Over four years ago I completed a month-long intensive interferon treatment and, after a return of the melanoma, I went through isolated limb perfusion. Tomorrow I learn how to put together a leukine injection and administer it to myself. It will be two weeks on, two weeks off for a year. I’ve read about the anticipated side effects, and am wondering if anyone in the community has experience with this therapy. How much will it impact my day-to-day life? Will I be able to still work a 40-hour week? Do I need to put weekend trips on hold during the two weeks on? Do side effects lessen after the first two weeks?

      Thanks for any personal experiences! I realize that each person will experience it a bit differently, but at least your stories will help me prepare.

      Best,
      Carolmcq

    Viewing 8 reply threads
    • Replies
        • January 23, 2013 at 3:15 am
        Harry in Fair Oaks
        Participant

          I did this regimen for a couple of years – that was more than 10 years ago.   For the 1st cycle or two, I had huge welts at injection sites.  Those mostly went away after a few cycles, and I had no issues at all afterward.  It did not affect my energy levels, and I was able to work OK.

          Best wishes,

          Harry

          • January 23, 2013 at 3:15 am
          Harry in Fair Oaks
          Participant

            I did this regimen for a couple of years – that was more than 10 years ago.   For the 1st cycle or two, I had huge welts at injection sites.  Those mostly went away after a few cycles, and I had no issues at all afterward.  It did not affect my energy levels, and I was able to work OK.

            Best wishes,

            Harry

            • January 23, 2013 at 3:15 am
            Harry in Fair Oaks
            Participant

              I did this regimen for a couple of years – that was more than 10 years ago.   For the 1st cycle or two, I had huge welts at injection sites.  Those mostly went away after a few cycles, and I had no issues at all afterward.  It did not affect my energy levels, and I was able to work OK.

              Best wishes,

              Harry

              • January 25, 2013 at 4:21 pm
              TAC
              Participant

                I was on Leukine for 8 years..self administered. Had 2 recurrences while taking it. Had the recurrences surgically removed and continued with Leukine. In 2012 my insurance stopped paying for it so I stopped it. Cost is about $20,000/year. No real side effects..some redness and swelling at injection site is all. I did the injections in my stomach. Can use an ice cube on injection site prior to injecting and it will help. Best of luck.

                 

                I was diagnosed in 2001. Stage II quickly going to Stage III due to a recurrence. I've had 6 recurrences, all within 1 inch of original site and all discovered by me, 8 surgeries, 2 sentinel node biopsies, 4 skin grafts, chemo (interferon), radiation, a vaccine and finally Leukine. My mel was on left side of my face in my hairline.

                Check your lymph basins regularly, get scans and pay particular attention to the site of your melanoma and the surrounding skin. I had digital pictures taken by my derm of my whole body, front and back plus closeups of left sid of my face. 

                Best wishes to you. 

                  • January 26, 2013 at 2:11 pm
                  Carolmcq
                  Participant
                    Thanks for your reply! Wow, I didn’t even realize that leukine is something I might be able to stay on that long. The ice cube is a good idea, since the hardest part for me is doing the initial stick.

                    I’ve given myself only 3 injections so far, but the side effects were only bad the first night. Since then I’m taking two Tylenol and going to bed. Either I’m sleeping through the effects, or they’re minimal.

                    I’ve had interferon too, and most recently the isolated limb perfusion. My insurance copay for the leukine is going to be around $50 for each of the 2-week rounds.

                    Best,

                    Carol

                    • January 26, 2013 at 2:11 pm
                    Carolmcq
                    Participant
                      Thanks for your reply! Wow, I didn’t even realize that leukine is something I might be able to stay on that long. The ice cube is a good idea, since the hardest part for me is doing the initial stick.

                      I’ve given myself only 3 injections so far, but the side effects were only bad the first night. Since then I’m taking two Tylenol and going to bed. Either I’m sleeping through the effects, or they’re minimal.

                      I’ve had interferon too, and most recently the isolated limb perfusion. My insurance copay for the leukine is going to be around $50 for each of the 2-week rounds.

                      Best,

                      Carol

                      • January 26, 2013 at 2:11 pm
                      Carolmcq
                      Participant
                        Thanks for your reply! Wow, I didn’t even realize that leukine is something I might be able to stay on that long. The ice cube is a good idea, since the hardest part for me is doing the initial stick.

                        I’ve given myself only 3 injections so far, but the side effects were only bad the first night. Since then I’m taking two Tylenol and going to bed. Either I’m sleeping through the effects, or they’re minimal.

                        I’ve had interferon too, and most recently the isolated limb perfusion. My insurance copay for the leukine is going to be around $50 for each of the 2-week rounds.

                        Best,

                        Carol

                      • January 25, 2013 at 4:21 pm
                      TAC
                      Participant

                        I was on Leukine for 8 years..self administered. Had 2 recurrences while taking it. Had the recurrences surgically removed and continued with Leukine. In 2012 my insurance stopped paying for it so I stopped it. Cost is about $20,000/year. No real side effects..some redness and swelling at injection site is all. I did the injections in my stomach. Can use an ice cube on injection site prior to injecting and it will help. Best of luck.

                         

                        I was diagnosed in 2001. Stage II quickly going to Stage III due to a recurrence. I've had 6 recurrences, all within 1 inch of original site and all discovered by me, 8 surgeries, 2 sentinel node biopsies, 4 skin grafts, chemo (interferon), radiation, a vaccine and finally Leukine. My mel was on left side of my face in my hairline.

                        Check your lymph basins regularly, get scans and pay particular attention to the site of your melanoma and the surrounding skin. I had digital pictures taken by my derm of my whole body, front and back plus closeups of left sid of my face. 

                        Best wishes to you. 

                        • January 25, 2013 at 4:21 pm
                        TAC
                        Participant

                          I was on Leukine for 8 years..self administered. Had 2 recurrences while taking it. Had the recurrences surgically removed and continued with Leukine. In 2012 my insurance stopped paying for it so I stopped it. Cost is about $20,000/year. No real side effects..some redness and swelling at injection site is all. I did the injections in my stomach. Can use an ice cube on injection site prior to injecting and it will help. Best of luck.

                           

                          I was diagnosed in 2001. Stage II quickly going to Stage III due to a recurrence. I've had 6 recurrences, all within 1 inch of original site and all discovered by me, 8 surgeries, 2 sentinel node biopsies, 4 skin grafts, chemo (interferon), radiation, a vaccine and finally Leukine. My mel was on left side of my face in my hairline.

                          Check your lymph basins regularly, get scans and pay particular attention to the site of your melanoma and the surrounding skin. I had digital pictures taken by my derm of my whole body, front and back plus closeups of left sid of my face. 

                          Best wishes to you. 

                          • January 25, 2013 at 10:36 pm
                          Roxy1453
                          Participant
                            I did leukine for a year. The only problem I had was itching. I was able to control it with over the counter drugs. I also traveled to was able to fly and take it with me.
                            • January 25, 2013 at 10:36 pm
                            Roxy1453
                            Participant
                              I did leukine for a year. The only problem I had was itching. I was able to control it with over the counter drugs. I also traveled to was able to fly and take it with me.
                              • January 25, 2013 at 10:36 pm
                              Roxy1453
                              Participant
                                I did leukine for a year. The only problem I had was itching. I was able to control it with over the counter drugs. I also traveled to was able to fly and take it with me.
                                  • January 26, 2013 at 2:16 pm
                                  Carolmcq
                                  Participant
                                    Thanks Roxy,

                                    It’s good to know that traveling, especially flying, will work out. Because of it needing to be refrigerated, it will take some planning I guess. Did you carry it on, or put it in your checked luggage? I’m just wondering how the airlines handle needles, etc. I’m guessing checked luggage is the best way to go, and then hope they don’t lose your luggage!

                                    Best,

                                    Carol

                                    • January 26, 2013 at 2:16 pm
                                    Carolmcq
                                    Participant
                                      Thanks Roxy,

                                      It’s good to know that traveling, especially flying, will work out. Because of it needing to be refrigerated, it will take some planning I guess. Did you carry it on, or put it in your checked luggage? I’m just wondering how the airlines handle needles, etc. I’m guessing checked luggage is the best way to go, and then hope they don’t lose your luggage!

                                      Best,

                                      Carol

                                      • January 26, 2013 at 4:37 pm
                                      Roxy1453
                                      Participant
                                        Hi Carol,

                                        I had a letter from my Dr. With me and I had it in a small cooler that went with me on the plane. It has to be handle carefully and in a suitcase that is thrown around is not good. No one questioned it and I went right through the check point.

                                        Best wishes for safe travel

                                        Nancy

                                        • January 26, 2013 at 4:37 pm
                                        Roxy1453
                                        Participant
                                          Hi Carol,

                                          I had a letter from my Dr. With me and I had it in a small cooler that went with me on the plane. It has to be handle carefully and in a suitcase that is thrown around is not good. No one questioned it and I went right through the check point.

                                          Best wishes for safe travel

                                          Nancy

                                          • January 26, 2013 at 4:37 pm
                                          Roxy1453
                                          Participant
                                            Hi Carol,

                                            I had a letter from my Dr. With me and I had it in a small cooler that went with me on the plane. It has to be handle carefully and in a suitcase that is thrown around is not good. No one questioned it and I went right through the check point.

                                            Best wishes for safe travel

                                            Nancy

                                            • January 26, 2013 at 2:16 pm
                                            Carolmcq
                                            Participant
                                              Thanks Roxy,

                                              It’s good to know that traveling, especially flying, will work out. Because of it needing to be refrigerated, it will take some planning I guess. Did you carry it on, or put it in your checked luggage? I’m just wondering how the airlines handle needles, etc. I’m guessing checked luggage is the best way to go, and then hope they don’t lose your luggage!

                                              Best,

                                              Carol

                                        Viewing 8 reply threads
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